6 December, 2016 | Proudly Brought to you by STAT

Fentanyl, a stealth killer, destroys the

lives of best friends
Chapter 1

Helping a friend

T OLEDO, Ohio DJ Shanks was early into his afternoon shift as a baker at the
Tim Hortons doughnut shop when the craving, and the dread, began. He called
the one person he knew would help. Fast.

Justin Laycock and DJ had met on their first day of kindergarten in nearby
Swanton. Now in their early 20s, they remained best friends. Do you have
anything? DJ asked Justin. Im sick. Justin didnt hesitate: I got you, bud.

He didnt need to ask what DJ needed. The childhood pals were consumed by
heroin addiction, and Justin knew DJ was dope sick.

Many heroin addicts dont fear death. Dope sickness is another matter. When the
body doesnt get the heroin it lusts for, it retaliates with brutal force: vomiting,
diarrhea, profuse sweating, intense cramping, paralyzing anxiety. Addicts will do
whatever they can to avoid it stealing, lying, or pimping themselves to get
heroin. Justin once took his grandmothers debit card. DJ had pawned his little
sisters video game console.

Two ordinary kids from Middle America, DJ and Justin were caught up in the most
pressing public health crisis of the day a wave of opioid addiction thats killing
nearly 30,000 Americans a year. But their story comes with a terrifying twist.

Their descent began with marijuana use in high school, then escalated to
prescription painkiller abuse and heroin. It would end with something even more
wicked.

After DJs call, Justin phoned his heroin dealer and ordered an 80 street slang
for $80 worth of heroin, about a half-gram. A half-hour later, Justin walked up to
the doughnut shop counter and slid a folded dollar bill toward his friend. DJ,
wearing white bakers pants and a Tim Hortons baseball cap, grabbed it and
quickly walked to the back of the shop, where he snorted the powdery substance
concealed inside the money. Justin, meanwhile, went to the bathroom and injected

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some of the drug, then returned and handed DJ another bill. DJ went into the
bathroom to snort more of the powder.

Justin Laycock describes buying drugs for his friend, DJ Shanks, who was working
at Tim Hortons.

Feeling good about taking care of his friend, Justin left the doughnut shop around
3:15 p.m. with plans to meet up with DJ later.

DJ went back to work, stopping occasionally to wipe his eyes and face an
apparent side effect addicts call the itchies. After about 20 minutes, video from
the shops surveillance system shows he became unsteady, bobbing back and
forth while pouring glaze over a tray of doughnuts. Slowly, he began to slump
forward, as if attached to a winch gently lowering him down. His head came to
rest on a sheet of glaze. His body, bent over the counter at the waist, appeared
lifeless.

The Tim Hortons manager saw DJ as soon as he came through the shops side
door. He took off his coat, dragged DJ to a back room, and called 911.

I just walked in and this guy was passed out, the manager told the dispatcher. I
have no idea how long hes been passed out, but hes got blue lips, no pulse.

The manager performed CPR, but it was too late. DJ never regained
consciousness. At 5:12 p.m. on Feb. 19, 2015, a doctor at the University of Toledo
Medical Center pronounced David Andrew Shanks Jr. dead. He was 21.

A surveillance camera captures DJ Shanks as he passes out after snorting

fentanyl.

Toledo Police, in a report filed two weeks later, concluded there was no
indication of foul play in the immediate cause of Shanks death.

By all appearances, this was just another fatal heroin overdose something that
happens more than once an hour in a country awash in opioids. But it wasnt
heroin that killed DJ. It was fentanyl, an opioid manufactured in hidden
laboratories to be up to 100 times more powerful than heroin. Its what killed the
musician Prince.

Fentanyl is a stealth killer, often sold to clueless buyers as heroin, prescription

pain pills or the anti-anxiety medication Xanax. DJ and Justin had no idea they
were snorting and injecting it.

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The drug has flooded the marketplace as street dealers on up to major
international cartels have discovered that it delivers heroins high at a fraction of
the cost. This creates a paradox where the profit margin for drug sellers
skyrockets as the street price for opioids drops.

The result: Fentanyl is poised to become the catastrophic exclamation point to 20

years of escalating opioid addiction in the United States.

STAT spent months interviewing friends and relatives of DJ, including hours of
conversation with Justin, to piece together this report. DJs journals, written in the
months before he died, offered insights into the turmoil he felt as he fought to get
off drugs while forever chasing the next high. STAT also examined court files,
police and medical examiner reports, phone records and text messages, and the
surveillance camera recordings from Tim Hortons.

Justin was shattered by DJs death. He blamed himself, and dulled the pain with
heroin. His family feared he would overdose like his best friend. But when he
least expected it, Justin would get one last chance at salvation.

Sean Proctor for STAT The subdivision in Swanton, Ohio, where DJ Shanks grew up.

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Sean Proctor for STAT Storefronts in downtown Swanton.

As a boy, DJ lived in a subdivision in Swanton called Westpointe Estates, near the

end of a cul de sac where neighborhood kids gathered to skateboard, ride bikes,
or play games like Ghost in the Graveyard. Justin, who lived with his father and
grandmother in a remote part of town, was a frequent visitor.

About a dozen miles west of the Toledo city limits, Swanton is home to just under
4,000 people. On Main Street downtown, there is an Elks Lodge and a few
insurance agents operating out of storefronts. Other buildings appear empty. The
biggest event of the year is the Swanton Corn Festival, which was first held in
1908.

Justin said he was attracted to DJs thirst for adventure, and they both considered
themselves daredevils. When skateboarding or snowboarding, they would try to
one-up each other with tricks. In school, it was a contest to see who could come
up with the funniest joke or pull off the best prank.

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At Swanton High School, DJ, a catcher on the baseball team, was the rare athlete
who also performed in the show choir and school drama productions. He played
Bob Cratchit in A Christmas Carol and was part of the cast of The Wizard of
Oz.

Justin was a talented illustrator who could sketch intricate comic book covers that
looked professional. He aspired to work in the video production industry and did
on-air reports for his high school television station. He also ran on the cross
country and track teams.

Toward the end of sophomore year, the venturesome spirit that bonded DJ and
Justin resulted in a fateful decision. The boys had tried cigarettes before, mostly
out of adolescent curiosity. On this day, they were at a friends house and noticed
smoke with a different odor. It was marijuana. The boys tried it and were quickly
buzzed.

I felt more laid-back, carefree, said Justin of that first experience with drugs,
just like everything was kind of pushed off to the side.

DJ, in a journal he kept in a drawer next to his bed, wrote that he started smoking
pot at 15 because it was the cool thing to do, all the cool kids were doing it. So I
felt like I needed to. Big mistake.

The two smoked more marijuana the next day, and within a few months they were
smoking daily. It became a ritual before they went outside and tried stunts on
their skateboards. The drug emboldened them to try riskier moves.

DJs grades, which had been average, plummeted to Ds and Fs. He stopped
playing sports and performing.

I would skip school with my buddies to get high, DJ wrote. It was the life I was
having soo much fun, not knowing I was going down a terrible path.

When he did go to school, DJ was getting in trouble. He had always been an

extrovert, the class clown. He delighted in the attention and in making people
laugh. But his behavior was more reckless now. He was given long suspensions,
once for starting a massive food fight, and another time for writing insults about
an administrator on a school wall. In his senior year, having fallen hopelessly
behind, he left school.

He worked to get his GED and found a job at a pizzeria, but not being in school or
playing sports left him ample time to experiment with drugs. He became a heavy

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user of Percocet, one of the most commonly prescribed opioid pain pills. It was an
escalation that worried his family. He seemed to need the drug.

Justins behavior also changed after he started regularly smoking pot. He would
become loud when high. He woke up one morning with mustard all over his face,
having no memory of making a sandwich the day before.

Justin transferred to a vocational high school a half-hour away for his junior year,
to enroll in a digital video production program. He transferred to another high
school the next year, when his family moved to a new town about 20 minutes west
of Swanton.

By then, he wasnt seeing much of DJ, who had moved to Toledo with his mother.
But he made new friends. And they introduced him to Percocet.

Soon, Justin was taking the pain pills between classes. He remembers being high
during a broadcasting class and going on air to anchor the school news report.

Im on screen and Im feeling good, he said.

Despite his drug use, Justin managed to graduate high school on time and moved
into an apartment in Toledo in early 2013.

He and DJ found each other a short time later. A mutual friend visiting Justins
apartment told him DJ was living just around the corner. Justin left immediately to
find DJs house and knocked on the door. DJ was surprised and delighted to see
Justin on his front step.

It was a connection right away, Justin said. I mean, it was good. He started
coming over every day, hanging out.

The friends picked up where they had left off doing drugs every chance they
could.

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via Facebook Justin (left) made this photo, with DJ, his Facebook cover image inApril 2013.

Chapter 2

Kissed by Jesus

D Js mother kept a silver serving platter in their house for special occasions. In
July 2013, DJ and Justin decided to use it for a memorable moment of their own
the first time they would use heroin together.

The gleaming platter was the perfect surface for chopping the drug into fine lines.
As they leaned over and snorted the powder, Justin recalled, their faces reflected
back at them.

Justin was leery of heroin hed refused several requests from DJ that they do it
together. He had heard that it grabs hold of you and doesnt let go. He had seen
homeless addicts in Toledo, strung out on the drug, and didnt want to end up like
them.

But this time, he gave in. They had been smoking synthetic marijuana, called K2,
which gave them a more intense buzz than regular pot, but they were out. He
needed to get high.

The next day, the friends woke up with the same thought: We need more heroin.

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I absolutely fell in love with it, Justin said. When he was high on heroin, all of
the problems with his family and the shame he felt from his drug use washed
away.

People say you literally have been kissed by Jesus, he said. Its like escaping
reality.

DJ had first used heroin more than a year earlier, and he was despondent as he
fell under its spell again.

I couldnt believe that I went back to this stupid drug, DJ later wrote in his
journal. I hated myself soo much. But I kept getting high, and so did my best
friend Justin.

The two were off on a months-long binge.

Everything else became subservient to the need for a daily fix. Family, girlfriends,
jobs none of them mattered.

Both were unemployed, and any money they had was going toward the drugs and
alcohol. They werent paying rent for the apartment they now shared. They
werent even buying food.

When DJs mom, Angela, showed up at their apartment one day, she discovered
the kitchen cabinets and refrigerator were empty. She drove to a supermarket
and returned with cans of beef stew and other groceries.

They were so thankful, Angela said. Made me feel like a million dollars.

Angela had a soft spot for Justin. He was introverted and shy, and didnt make
friends as easily as DJ. Tall and slightly built, Justin appeared younger than he
was. Whenever Angela was around, he was polite and courteous.

I would have never in a million years pegged him for a kid that would get in
trouble, she said.

So when the two were evicted from their apartment, Angela let them move into
her place and helped them get jobs at a landscaping company. It was good money
some weeks they earned as much as $800 each. Eventually, every cent went to
purchase heroin and marijuana. They soon lost their jobs.

My mom knew that we were on drugs and she was very worried, DJ wrote in his
journal. But her concern had no impact, DJ wrote, as he was sucked in deep.

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Angela had been down this road before with DJ.

He told his mother he started on heroin around the beginning of 2012, when he
was having difficulty getting Percocet. At one point, desperate for the painkillers,
DJ intensely questioned his ill grandmother about her pain medications. She
worried DJ might try to steal her pills.

Then he discovered heroin could fill the void.

DJs path is a well-traveled one: Four out of five new heroin addicts in the United
States started by using prescription painkillers, according to the Centers for
Disease Control and Prevention. The shift to heroin has occurred as prescription
pain medications like Percocet and OxyContin have become harder to find and
more expensive on the street because of tighter controls on prescribing, as well
as the development of abuse-deterrent versions of the drugs.

Courtesy Macey Fruth A photo of DJ from his girlfriend Macey Fruths photo album.

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DJ tried many times to break his addiction.

His first attempt failed. A Toledo treatment center was reluctant to accept him
because no drugs were detected in his urine, Angela said. DJ was baffled. He was
smoking marijuana and using heroin. The detox center finally agreed to take him,
but just for three or four days. It did nothing to curb his desire to get high.

Soon he had moved from snorting heroin to injecting it for a quicker and more
powerful high.

I started shooting it up, and this was terrible, he wrote. About 2 weeks after I
started shooting, I died for the first time. My heart stopped. My friend had to rush
me to the hospital, and they had to stab me in my heart with adrenaline to bring
me back to life. To most people that would have taught them a lesson and make
them want to quit. But I loved it. I was playing on the edge of life and death. I was
in a whirlpool of emotions.

To support their habits, Justin and DJ pawned the Wii game consoles and an iPod
of DJs younger siblings. They stole Angelas camera.

Angela kicked them out of her basement. Justin moved in with his grandmother,
and DJ went to live with his father. They were back in Swanton and little
changed. One day, DJs father called Justin to confront him about the pair stealing
items from his house. Justin was playing the card game Rummy with his
grandmother, and she overheard the conversation. She knew Justin was doing
drugs and wasnt going to put up with it. If he wanted to stay at her house, he was
to have no more contact with DJ. She took Justins phone and broke it. If he was
going anywhere, he had to clear it with her.

She put me on house arrest, Justin said.

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via Facebook Justin with his grandmother, Marilyn Laycock.

By then, DJs father had thrown him out of his home. It was December and
temperatures were falling below zero at night. Angela and DJs father, who were
divorced, had no idea where their son was living. They worried he would die.

They devised a plan to save him.

They told the Swanton Police that DJ had stolen several items from their home,
including a snowboard, two pairs of snow boots, a music mixer, and a
microphone, Angela said. They let the police know DJ would be coming by his
fathers house later to pick up clothes and that he was driving with a
suspended license.

The police were waiting on Dec. 13, 2013, when DJ rolled into town in his white
Hyundai Sonata. They confirmed the suspended license and opened the trunk,
where they found the snowboard and boots. They also discovered three clear
plastic baggies in the car, one of which tested positive for traces of heroin. DJ was
charged with possession of drugs, receiving stolen property, and driving with a
suspended license.

We set our son up basically to be arrested, Angela said.

At least DJ was not freezing to death. At least he wasnt overdosing. It was a

relief. And how sad is that?

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Courtesy Angela Shanks An excerpt from DJs diary.

Chapter 3

Feeling the devil

T he arrest was a jolt for DJ.

He spent his first few days out on bail sleeping on the floor of a house with other
addicts he barely knew. He told his mother he was worried he would have to
prostitute himself to stay there. He begged her to allow him to come home. She
refused.

Out of options, DJ checked himself into the Arrowhead Behavioral Health center
near Toledo, in his second stab at rehab. He was admitted for only a week. Angela
fought with her insurance company and the center to keep her son there longer.

The best they could do, Angela said, was allow DJ to participate in a day program
for an additional two weeks. During that time, she dropped DJ off in the morning
and picked him up on her way home from her job at a local bank. She didnt want
him alone in her house.

DJs mother reads from his journal.

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Ive never been so happy in my life now that I am finally clean, DJ wrote on a
yellow legal pad while at Arrowhead. I can now think straight, I have good goals
set ahead for me. I want to get a good factory job and start making some real
money.

I really want to be done with this drug, he continued. I really hate this and
what I was doing. I cant believe that I stole from my own mother and father. I
really wish I could go back in time and never start this thing. It has ruined my
whole life right now.

DJ pleaded with himself, and offered himself encouragement. On one sheet of

paper he wrote I can do this 49 times.

I cannot give up on this, he wrote on another page. I got this. I know that I can
do this. I really can. I will use all the tools I can to stay on top of this nasty
disease. DJ you can do this.

After Arrowhead, DJ was convicted of the drug charge and sent to jail on March
14, 2014. He was released eight months later, after successfully completing
another drug treatment program.

With DJ out of his life for nearly a year, Justin had also stopped using drugs. The
tight restrictions placed on him by his grandmother kept him away from old
temptations. His father was able to get him a job at the auto parts plant where
several family members were employed. Justin worked the second shift as a laser
technician, making parts for the Acura RDX. It was more money than he had ever
made. He found a new girlfriend and was thinking about getting married.

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Sean Proctor for STAT The Tim Hortons in Toledo where DJ worked.

Sean Proctor for STAT The apartment complex where DJ and Justin lived in Toledo.

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Sean Proctor for STAT When he was off drugs, Justin got a job at this auto parts plant.

I just came back up, Justin said. I made a name for myself. I just got a truck. I
got my family back.

DJ was released the week before Thanksgiving in 2014. He landed a job as a

baker at the Tim Hortons and was making enough money to put some in savings.
He, too, had a new girlfriend.

I thought he was good. I really did, said Angela. I thought he was moving
forward with his life. He was so happy.

A short while later, Angela walked into her house and saw Justin. Oh my God,
what are you doing here? Angela recalled saying. Why are you here?

Justin tried to put Angela at ease. He said he was just checking in on DJ after not
talking to him for months. DJ is like my brother, Justin told her. I just wanted
to come and see him.

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DJs sister Julia knew better. She was a year younger than DJ and the two were
close. She had helped get him the job at Tim Hortons, where she worked
part-time. She had also introduced him to his new girlfriend. The reappearance of
Justin rattled her.

DJs sister Julia worried about her brothers friendship.

I could feel the devil, Julia said. You could feel that this was not supposed to
happen that these two needed to stop being friends.

Justins family shared those fears.

He knew not to go back to him, and he did, said Justins grandmother, Marilyn
Laycock. You know they were inseparable. One looked out for the other no
matter what you say or did.

Justin was using heroin again when he showed up at DJs house. Grief-stricken by
another friends fatal overdose, he had relapsed about a month before DJ finished
his jail term.

It went downhill from there, he recalled. This was the worst Ive ever been in
my entire life. Using, using, using, using.

He was found passed out in his truck during his shift at the auto parts plant and
failed a drug test. Justin knew he needed help and agreed to go to Arrowhead, the
treatment center where DJ had gone earlier that year. The facility initially refused
to take him because a urine test didnt turn up any drugs, Justin said. So he left,
did heroin, and came back.

He was discharged in less than a week. Justins father, Ron, was stunned.

Justins father, Ron, talks about his sons experience in rehab.

Hes calling, Come and get me, they said Im not bad enough, Ron said. They
should know better. He said the message to addicts such as Justin is that
nobody cares, why should I?

Arrowheads chief executive declined to comment. The center did give Justin a
prescription for Suboxone, a drug used to treat opioid addiction by suppressing
symptoms of craving and withdrawal.

Justin knew just what to do with it.

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Theres a black market for Suboxone. Some addicts who have developed high
tolerances for heroin switch to Suboxone for a few weeks as a way to reduce their
tolerance without getting dope sick. When they resume using heroin, the euphoric
effect is heightened in what addicts describe as a virgin high.

So as soon as he was out, Justin went to his drug dealer and traded the
Suboxone for heroin.

His relapse was not unusual. Typically, 40 percent to 60 percent of drug addicts
relapse in the first year after treatment. One study found the rate was even higher
for opioid detoxification programs, with 91 percent of patients relapsing more
than half within a week of release. Some studies of newer medications used to
treat opioid addiction have reported more promising results.

Justin said DJ had already started using heroin again before they reunited around
Thanksgiving. DJ was trying to use less than before. His job at Tim Hortons was
going well, and he didnt want his family or his girlfriend to know what he was up
to.

Macey Fruth was a high school senior from Ottawa Hills, a wealthy Toledo suburb
that is home to the areas professional and business elite. While Ottawa Hills is
only 17 miles from Swanton, it was a foreign land to DJ.

Despite their different backgrounds, the couple hit it off. Macey loved how DJ
easily connected with and looked out for people. When they went sledding one
day, DJ pulled his car over to help a stranger stuck in the snow.

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Lucas County Prosecutors Office DJ and Macey on a ski trip shortly before he died.

The couple went to a Christmas Eve church service with her family and took a ski
trip to Michigan. Six days before he died, DJ updated his Facebook profile picture
with a snapshot from that trip: Macey was kissing his cheek, and he was smiling.

Behind the smiles, though, DJ was spinning out of control.

Before dawn one February morning, Julia woke up her mother with alarming
news: DJ had relapsed.

A few days earlier, he had been admitted to a hospital with pneumonia-like

symptoms, after Justin had put him in a tub of ice at a drug dealers house when
DJ began to overdose.

He was embarrassed about it, Macey said. He didnt want to talk to anyone
about it. He got upset and was crying. He needed to show everyone he was doing
better.

DJs family mobilized in an urgent attempt to save him. The first priority: making
sure he was never alone with Justin.

Macey would do her homework at a table at Tim Hortons during DJs shift,
watching to be sure Justin didnt come in. Angela would drop by DJs place
unannounced. Julia reached out to DJs other friends, asking everyone to keep an

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eye on him.

Angela called DJs probation officer in early February, pleading with him to come
out and give her son a drug test. She desperately wanted DJ back in jail. It had
been the only place that could keep him safe from heroin.

Angela said the probation officer told her that if she was worried, she should take
DJ to the hospital. It was not the answer I was really looking for, she said.

The Fulton County Probation Department said it couldnt comment on DJs case
because parole records are not public.

On Feb. 18, Angela found out that Justin was planning to stop by and visit her son.
She sent DJ an anguished text.

DJ was enraged, and texted his mother back.

Angela persisted.

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DJ didnt respond.

He wasnt scheduled to work at Tim Hortons on Feb. 19, but was called in for a
short afternoon shift. Normally, Macey would have been there, doing her
homework and watching for Justin. But on this day, she was attending an event at
her fathers real estate company.

She wanted to be at the restaurant instead. She knew DJ was in a bad way. He
had just found out a friends little brother had died from an overdose. He also had
told her he wanted to hang out with Justin that night, a signal to her that he was
thinking of heroin.

Macey wrote DJ a text message at 3:31 p.m.

Two minutes later, DJ texted back.

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He was close to passing out, having already snorted the fatal doses of fentanyl
delivered by Justin.

Macey could sense something was wrong.

After getting no response, she texted again 15 minutes later.

DJ couldnt reply. He was sprawled across the doughnut shop counter.

DJ lay there for more than a half-hour after falling unconscious. A coworker
noticed him after about four minutes. Twice, she came over to try to wake him
before placing her hand on her headset and walking away toward the drive-thru
window. She returned at one point, but only to walk around DJs limp body, open
an oven door just above him, and put a tray inside. Two customers came through
the side entrance, with a clear view of DJ behind a glass partition, and either
failed to recognize something was wrong or decided not to do anything. Only then
did the manager arrive and call 911.

DJ Shanks was passed out for more than a half-hour at his job at Tim Hortons
before someone called for medical help.

A detective investigating DJs death, Sgt. Brian Bortel, said later that the
coworkers delay in summoning help for DJ was likely costly. He has a better
chance of survival if she calls our fire department, he said in an interview. The
coworker told another investigator that she panicked.

As word spread of DJ passing out at work, his family scrambled to the hospital.

It was just disbelief, said Macey. Im looking at his gray dead body with blood
all over his teeth, thinking, I just talked to you two hours ago. We were fine two

21
hours ago.

Julia hugged her big brother goodbye and felt sticky doughnut glaze in his hair.

Thats just not how he wanted to go out, she said.

The family was overcome with despair. They had desperately tried to keep DJ
alive. Nothing had worked.

DJs sister on addiction.

I want to sit here and give people a good message about my brother, said Julia.
But, at the same time, I dont know what to say to help them. I dont. What can
you do besides praying to God that you wont have that itch tomorrow?

Justin, meanwhile, had no idea what had happened to his friend.

He was waiting for DJ down the street from Tim Hortons, at the Knights Inn. The
hotel is hard by Interstate 475 and offers rooms by the week. Weeds spring from
cracks in the parking lot asphalt. The rooms are bare, with hooks where pictures
once hung. As he waited, he continued to inject what he believed was heroin with
a young woman he grew up with, a former standout athlete in high school.

Justin thought DJ would finish work at around 4 p.m. At seven seconds past 4, he
started calling his friend. No response. He texted him.

Shortly before 5, he messaged DJ again.

An hour and a half later, he called DJ. The manager at Tim Hortons answered DJs
phone. He wanted to know who was calling.

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Sean Proctor for STAT Justin injected drugs at this Knights Inn while waiting for DJ.

I said, This is Justin, and he says, Justin who?

Laycock, his best friend, Justin replied. Is DJ there?

Hold on, the manager said. I think the police want to talk to you.

Justin hung up.

Assuming DJ had been caught with the drugs, Justin continued getting high.

Julia, meanwhile, was quickly putting together the last moments of her brothers
life. She found out Justin had been at Tim Hortons that afternoon and correctly
assumed it was to bring her brother drugs. Later in the evening, she started
sending Justin messages.

My phone blows up, Justin said. I mean notification, notification, notification

and I am thinking to myself, what is going on.

Julia had sent him a series of Snapchat videos. He hit play: You killed my
brother. Youre a killer. Youre a murderer.

Justin was stunned. I didnt believe it, he said.

Justin in a visitors room at the Corrections Center of Northwest Ohio.

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Chapter 4

An offer of redemption

D J was buried beneath a temporary stone marker engraved with a baseball bat
and a ball and inscribed with the words Fun Loving Free Spirit. Justin didnt
attend the funeral his best friends family made clear he wasnt welcome.

Justin retreated to his grandmothers house in Swanton, where he numbed

himself with heroin to escape the pain of DJs death, and his role in it.

He began stealing again from his family, pawning his fathers laptop and making
off with his grandmothers debit card to withdraw $150 for a days worth of
heroin.

It was the lowest Ive ever been in my entire life, Justin said. His grandmother,
after all, had helped him get off drugs for a while and taken him in when no one
else would.

Now, as DJs parents had done two years before, Justins grandmother turned to
the law as a last resort. She called the police, who came and arrested Justin.

After he was hauled away to jail, she found a note Justin left behind. Ill be
watching over you all til we meet again, he wrote. I love you all and Ill miss
you all. Was Justin contemplating death? His family was unsure.

Any day I expected to lift up the phone and (hear) Justin overdosed or he got
killed or whatever, his grandmother said.

The withdrawal from heroin while locked up was punishing. Justin defecated on
himself. He sweated profusely. He couldnt eat or sleep. He would sit in the
shower for hours, hardly able to move. Still, all he could think about was doing
heroin again.

Justin was released on bail after two weeks and went to stay with a friend. He
never unpacked his bag. Only hours after leaving jail, he removed an ankle
monitor with tree limb cutters and stole a truck parked in his friends driveway.
He drove straight to his dealer. After a four-day binge, he was out of money and
the police were looking for him.

He sent his family a group message apologizing for the pain he had caused and

24
telling them he didnt expect to live through the night. They begged him to turn
himself in and let him know they loved him. His dad told him he was still young
and had a chance to turn his life around. The outpouring surprised Justin.

I mean, how do you love someone like me when I dont even love myself? he
said.

Just after midnight on April 19, in the middle of a residential street on the south
side of Toledo, Justin walked toward a police cruiser with his arms in the air and
surrendered.

While Justin unraveled in the weeks after DJs death, Lucas County chief
toxicologist Robert Forney and his staff meticulously screened DJs blood for
drugs. Forneys team didnt find any heroin.

What they did discover was a lethal dose of fentanyl.

Forney has been on the job for 40 years. His lab does testing for 21 counties in
Ohio and Michigan and has chronicled the rise of drug overdose deaths, which
have now surpassed auto accident fatalities nationally. He started testing for
fentanyl in 2014, when there were 13 fentanyl-related deaths. By the next year,
the number was 66. Its still growing.

In no state is the fentanyl crisis more dire than in Ohio, where officials last year
requested emergency assistance from the federal Centers for Disease Control and
Prevention. In 2014, there were 502 fatal fentanyl-related overdoses in the state,
a 500 percent increase from 2013. The victims tended to be younger, single white
males, according to the CDCs review. But the drugs reach is long. A third of the
victims were women, and the ages of those who died ranged from 17 to 71.

25
Natalia Bronshtein/STAT

The most terrifying aspect of the rise in fentanyl is that many victims, like DJ,
have no idea they are using it. In the Sacramento, Calif., area earlier this year, 12
people died after taking counterfeit Norco pills, a common prescription painkiller,
that contained fentanyl. In Florida, nine people died from counterfeit Xanax pills
containing fentanyl.

And in Akron, Ohio, police have identified an even more potent version of fentanyl
that is being cut into heroin. Called carfentanil, it is the main suspect in 296
overdoses and 23 deaths since July 5, said Lt. Rick Edwards, a police spokesman.
Carfentanil is used to sedate elephants and other large animals to confirm what
it was, detectives obtained a sample of the drug from the Cleveland Zoo.

Calling it an unprecedented threat, the US Drug Enforcement Administration

warned last month of an expansion of the fentanyl market that will likely result
in more opioid-dependent individuals, overdoses, and deaths.

Although it is legally prescribed for pain sufferers, such as those with cancer,
almost all of the street-level fentanyl is illicitly produced in places such as China.
A kilogram of fentanyl purchased from a lab in China for $3,000 to $5,000 can
generate $1.5 million in revenue on the street, according to the DEA. That is
about 20 times the return for a similar amount of heroin. The reason is the
potency of fentanyl: It can be mixed with cutting agents in low doses to stretch
the supply.

Forney doesnt know why DJ died and Justin survived, or whether DJ would have

26
lived if he used heroin instead of fentanyl. There was alcohol in DJs blood, the
equivalent of two and a half beers, which could have exacerbated his distress.
And everyones tolerance level for opioids is different.

On Nov. 19, 2015, exactly nine months after DJs death, Justin was indicted and
charged with one felony count of corrupting another with drugs. Toledo Police
activated the dormant case after obtaining the Tim Hortons surveillance tape and
the toxicology results. The charge against Justin came amid a nationwide push by
prosecutors to punish those supplying fatal doses of fentanyl.

Those charged have mostly been street-level dealers rather than major players in
drug rings. In the case of DJs death, the dealer who drove to Tim Hortons to
deliver the fatal dose was never charged. Toledo Police said they were unable to
positively identify the dealer a man in his 20s Justin knew as BG.

Justin decided early on not to fight the charge. He admitted to detectives that he
bought the drugs that DJ used just before he died.

He was brought in to Lucas County Common Pleas Court Judge Ian Englishs
courtroom on March 17 to plead no contest admitting that the allegations in
the complaint against him were true. A prosecutor for 13 years, English had been
a judge for a year and was known as a critic of harsh sentences for substance
abusers. Justin hoped for leniency.

Instead, he learned the charge carried a mandatory sentence of at least two years
in prison and a maximum of eight. I was devastated, Justin said. Moreover,
under the charge, the judge could not require that he get drug treatment while
locked up.

27
Laura Mcdermott for STAT Justin listens during his sentencing by Judge Ian English at Lucas
County Common Pleas Court in Toledo.

Judge English discusses Justins case.

The judge was surprised by the harshness of the mandatory sentence as well. He
saw in Justin someone more in need of help than punishment. He wasnt a drug
dealer, the judge explained later in an interview: This wasnt a crime of profit.

In the courtroom, he called Justins public defender and the prosecutor to the
bench and proposed a novel alternative: He could craft a sentence that included
less jail time and the treatment Justin was seeking for his addiction but Justin
would have to admit to a more serious charge of involuntary manslaughter. In the
rigid world of mandatory drug sentences, the only way the judge would have
discretion was if Justin admitted to killing his best friend.

I read the charge over and over and over in my head, Justin said. I am thinking
to myself that if theres anybody that looks at my record and sees that, they are
going to know that somebody died. His attorney advised against it, warning
Justin that it would be difficult to find a job and start a new life with a
manslaughter conviction. Only murder and child molestation are considered more
serious felonies in Ohio.

Justins family was mystified by the need to plead to the higher charge. He didnt

28
murder him intentionally, Justins grandmother said. But in order to get help he
had to take that charge, and I dont think that was right at all.

DJs mother talks about Justin.

Even members of DJs family acknowledged Justin acted without ill intent. In no
way shape or form do I think that Justin intentionally meant to hurt DJ, Angela
said. I think Justin was simply DJs friend, DJs connection for what he wanted to
get.

Justin ultimately decided the trade-off was worth it. He wanted treatment that
would give him a legitimate chance to stay off drugs, even if it meant being
labeled a killer. On April 21, he stood before the judge in an orange jumpsuit with
a chain around his waist, attached to manacles for his hands and feet. His head
was shaved. No family members came to support him.

I never knew it was fentanyl, Justin told the judge. It wasnt my intention to kill
my best friend at all. It was to help him out.

He begged for a chance to get treatment. I am just asking if I can please just get
help, your honor, he said.

The prosecutor said a young man was dead and that justice required Justin be
punished with a prison term.

It wasnt my intention to kill my best friend at all. It was to help him out.

Justin Laycock

The judge said that he struggled with the decision but that the punishment had to
include jail time because a life was lost. He sentenced Justin to a year in jail
half the mandatory minimum sentence he faced under the original drug charge.
More importantly, he ordered that the jail term be followed by six months of
treatment in a locked facility. When Justin finishes treatment, he will be required
to wear an electronic monitor for six months, undergo drug tests, and attend
12-step meetings.

The judge told Justin that he was giving him a chance for treatment so that you
can make the life you took worth something. He warned that if Justin used drugs
again, he would impose an eight-year prison sentence. He then wished Justin
good luck.

DJs family, and even some of Justins, were hoping he would get a longer jail

29
term. The more time he is forced to go without heroin and other drugs, the more
likely he is to break his addiction, they said.

It would have been nice to see it be longer, said Angela, who saw her own son
struggle to get off drugs. She figured if Justin received a sentence of seven years
or so, that maybe that will be long enough for him where hell have a chance.
And it will get him where he needs to be. And hes going to be alive.

Justin said he is focused on redemption, starting with repairing his relationships

with his grandmother, father, and sisters. During an interview at the Corrections
Center of Northwest Ohio a month after his sentencing, he said he thinks often of
DJ. Hes on my mind all the time, Justin said. Hes in my dreams.

He acknowledged he also thinks of heroin.

Justin talks about staying off drugs.

Sean Proctor for STAT DJ Shankss grave site at Toledo Memorial Park in Sylvania, Ohio.

If youre asking if its on my mind, it comes and goes, he said. Whenever I

imagine myself doing it again, I imagine this place. I imagine my friends dying. I
imagine myself overdosing, dying myself. I imagine going back to prison. You
know, I mean none of this is worth it. He talked about losing the girlfriend he
wanted to marry, as well as the respect of his family, and the hurt he caused DJs

30
family.

I am not willing to do it again, he said.

This is the tragedy of Americas opioid crisis: A young man goes to help his best
friend and ends up helping to kill him. Their families, seeing whats coming, cant
stop it. They turn to an overwhelmed health care system for treatment and
instead mostly find indifference. In the end, they see jail, of all things, as their
only hope.

What will become of Justin? Despite an eight-year sentence hanging over his
head, will he go back to drugs when he is released?

The man who gave Justin one last chance didnt hesitate to answer.

Yes, Judge English said. He will get out, maybe find a job. He will have money,
and the people who do heroin that he hung around with will find him.

Epilogue

DJ Shanks would have turned 23 on May 18 this year. His father, David Sr.,
declined to participate in this story.

Justin Laycock turned 24 this past Saturday. He is scheduled to finish his jail
term next April. He will then begin a six-month treatment program in another
locked facility, with his release set for October 2017. His prison caseworker
reported to Judge English in May that Justin has been cooperative with staff,
attends AA meetings, and participates in other programs designed to teach life
skills.

Angela Shanks, DJs mother, is active in a local support group for families of
victims of the opioid crisis. She is open to the idea of speaking with Justin one
day.

Macey Fruth, DJs girlfriend at the time of his death, will be a sophomore at Ohio
University this fall. She spent this summer as a marketing intern in Florida. She
goes home to Toledo infrequently.

Ron Laycock, Justins father, has not communicated with his son in jail. Justin
has written several letters to his father apologizing for his actions and expressing
hope they can have a relationship in the future.

31
Marilyn Laycock, Justins grandmother, remains in contact with her grandson.
She said he is welcome to stay with her when he is released.

Julia Shanks, DJs younger sister, suffered from depression and anxiety in the
months after her brothers death. She said she is doing much better today and
recently started a job as a bank teller.

DJ was one of 215 people to die from heroin or fentanyl-related overdoses in the
greater Toledo area in 2015. This year, based on cases in the first few months of
2016, the local medical examiner projects there will be even more deaths at
least 236.

Contributors

Story by: David Armstrong

Videos by: Matthew Orr
Story editor: Gideon Gil
Photo editor: Alissa Ambrose
Art direction: Alex Hogan
Motion graphics: Dom Smith
Web Development: Corey Taylor, Ryan DeBeasi, Jim Reevior
Page Design: Jen Keefe
Project manager: Tony Guzmn
Copy editor: Sarah Mupo

Editors note: Excerpts from DJs journal and text messages between DJ, Justin,
and family members appear verbatim. They were not edited for spelling or
grammar.

32
6 December, 2016 | Proudly Brought to you by STAT

One mans desperate quest for a brutal

appendix cancer surgery
PITTSBURGH The operation is so terrifying some call it MOAS: the Mother of
All Surgeries. It can take 16 hours. The risk of complications is high. And after 30
years of research, doctors are still arguing about how well it works.

But as Stephen Phillips shimmied himself onto the operating table one recent
morning, he was almost relieved. Hed spent five months desperately trying to
arrange this surgery in the hope that it would beat back his rare cancer of the
appendix.

Now, as the surgeon scrubbed in, Phillips was ready or as ready as one can be
to have his innards scraped with electrified wires and sluiced with hot poison.

Its been referred to as barbaric. Its been referred to as having up to 10

abdominal surgeries at once. Its not for the faint of heart, hed said a few weeks
earlier. He was nervous, but also eager. Its like gearing up for the Stanley Cup
championship and the Super Bowl, all rolled into one, he said. Minus the
hotdogs and the beer.

STAT followed Phillips for three months on a winding odyssey that started at his
home in Springfield, Mass. He consulted nine medical teams in seven states,
fought with his insurance company, and dragged himself to appointments in
distant cities when he could hardly walk.

1
To appendix cancer patients, Phillipss frenzied medical crusade is familiar. Most
are told in no uncertain terms that their condition is fatal. But the Internet tells
them otherwise. A Google search brings them to descriptions of this marathon
surgery cytoreduction combined with hyperthermic intraperitoneal
chemotherapy, or HIPEC, for short and yields a list of institutions that offer it
as a treatment for appendix cancer and other tumors of the abdominal cavity,
including colorectal and ovarian cancer.

Fifteen years ago, that list included just 10 or so American hospitals. Now, the
number is closer to 100 but many patients are reluctant to trust doctors who
are newer to this procedure, and experts say theyre right to be wary.

For the patient to survive, gloved hands need to feel out and remove every last
tumor in the patients belly no mean feat when the malignancies hide among
loops of intestine and nestle into the deepest, darkest corners of the peritoneum.
The protocol then calls for hot chemotherapy to be pumped into the belly to take
care of any remaining cancer. Yet the drugs can only kill off microscopic bits.

If the surgeon has missed even a single tumor nodule, the cancer could grow back
again even before the patient has recovered from surgery.

And so, often with little guidance, patients hunt for a surgeon they can trust.

People will go to six or eight different surgeons. Theyll do a West Coast tour and
an East Coast tour, and really struggle to figure out who the best fit is for them,
said Dr. Laura Lambert, a surgical oncologist at UMass Memorial Medical Center
in Worcester.

Phillips knew what he wanted in a surgeon: The best hands.

So he set out to find them.

2
Stephanie Strasburg for STAT Stephen Phillips listens to Dr. Georgios Georgakis as he is
prepped for surgery in Pittsburgh.

The diagnosis

Phillipss saga, like that of many appendix cancer patients, began with a
misdiagnosis.

Late last September, just after a dinner to celebrate his 31st wedding anniversary,
a sharp pain flashed through his lower right abdomen. The next day he was
rushed into surgery for appendicitis: a routine operation, the surgeon told him, no
more than 20 minutes.

He knew something wasnt right when he woke up to a room packed with his wife,
Zita, his adult kids, his friends, and his in-laws. Even a client from his legal
practice showed up: an Orthodox priest who led a special prayer circle. There
were hardly enough surfaces to hold all the flowers and teddy bears and cards.

Instead of 20 minutes, the surgery had lasted hours, because Phillips had a lot
more than appendicitis. He had appendix cancer, and it had metastasized: The
cells that lubricate the intestinal tract with a mucous-like jelly had mutated out of

3
control, making their way from inside his appendix out into his abdominal cavity.
There, they had begun to form tumors. They clung to his intestines and spread
webs of white on the lining of his abdominal cavity.

The prognosis wasnt good. If left there, the tumors would grow and grow,
pushing up against his organs, blocking his digestion, and probably starving him
to death.

Phillips, 58, was no stranger to terminal cancer. For over a decade, hed
volunteered his legal services to hospice patients, drafting wills and
powers-of-attorney, driving patients to appointments, watching Patriots games by
hospital bedsides. Hed tracked down one patients estranged son. Hed brought
fake champagne into a hospital room for another patient, a man with liver cancer
who wanted one last drink before he died.

Phillips knew that this kind of diagnosis meant he had to act fast. Sometimes I
get in there, and its too late, the patients out of it, cant even sign his own name.
Or hes passed away, he said. Time is everything.

But he couldnt take charge of his own medical case. He could hardly get out of
bed.

It was his younger brother Joe who, the night of the diagnosis, began to Google
appendix cancer. He searched on his phone while at the hospital; he searched
from his desk at the insurance company he runs; he searched at home. And the
term that kept coming up was HIPEC.

4
Stephanie Strasburg for STAT Dr. David Bartlett looks at live scans of Phillipss abdomen as he
prepares to operate.

The controversy

Steve Phillipss life depended on a procedure almost as contentious as it is

invasive.

The package cytoreduction and HIPEC had been dreamed up as a kind of

super-treatment for stubborn tumors that had metastasized into the abdominal
cavity and were mostly unreachable by intravenous chemotherapy.

The idea: start the patient on IV chemo, just in case. Then open him up and
scrape away all the tumors. Then heat chemo to 107 degrees Fahrenheit, because
tumor cells are thought to be more susceptible to high temperatures than normal
cells, and pump it straight into the patients belly. Slosh it around for almost two
hours. Suction it out.

In the 1980s, when American surgeons first borrowed the technique from Japan,
it was a gamble.

Surgeons have since gained experience with the procedure, and mortality rates

5
have fallen. But it remains controversial.

There are some institutions that dont do this type of procedure, and say that we
dont have enough data to support doing it, said Dr. David Bartlett, a surgical
oncologist at the University of Pittsburgh Medical Center, who estimates that he
has performed the operation more than 1,000 times. And then you have the other
end of the spectrum, the zealots

The zealots, he explained, believe its unethical to do clinical trials in which some
patients wont get the heated chemo. In their view, thats depriving them of the
full treatment.

Yet to Dr. David Ryan, chief of hematology and oncology at the Massachusetts
General Hospital Cancer Center, thats exactly the kind of research thats needed.
He knows that if a surgeon can cut out all the tumors, the patient has a better
chance at survival. He just isnt convinced that the heated chemotherapy has any
therapeutic effect.

Reams and reams of research have been published about the operation. In 2012,
one paper reported that 63 percent of patients with less aggressive forms of
appendix cancer survive at least 10 years if they have IV chemo, cytoreduction,
and HIPEC all together.

We know that the whole package works, said Dr. Victor Verwaal, a colorectal
surgeon and HIPEC researcher at Aarhus University Hospital in Denmark.

But many experts, including those who regularly perform the procedure, take
issue with these findings, as well as much of the literature about cytoreduction
and HIPEC. They say that researchers have been too selective about which
patients to include and that the protocols werent rigorous enough to really
understand the benefit of the heated chemo.

6
More exacting studies notably a randomized controlled trial in France are
finally on their way.

Tumors dont wait for the latest research, though. And the Phillips brothers
werent about to, either.

Stephanie Strasburg for STAT Bartlett, left, and Georgakis scrape tumors from Phillipss
abdomen.

The hunt

Steve Phillips could hardly walk. Hed just had two abdominal surgeries in two
weeks one to take out his cancerous appendix, and the other to repair leaky
sutures. But on the October morning after he was discharged, he woke at dawn
and dragged himself out to the car, where Joe was waiting to drive him the 90
miles to Boston to meet two different teams of HIPEC specialists.

The trip wasnt just about Phillips choosing a surgeon. The surgeon, theyd been
told, would also have to choose him. If the tumors had spread too much, or if he
were too weak, most doctors wouldnt operate.

7
Walking from his house to the car had Phillips doubled over in agony. I was very,
very nauseous, in a lot of pain. It was rough, he said.

But he had to project strength to the surgeons.

Im ready to get in a wheelchair, he said. And my brother and my son say, No,
you cant get in a wheelchair. Youve got to frickin walk in there and show these
guys that youre ready. And so thats what I did.

In spite of his condition, the two medical teams they met with in Boston seemed
more than happy to take on his case. Every meeting is almost like a sales pitch,
said Joe Phillips.

But Steve wasnt yet ready to pick which hands hed trust: He isnt the type to be
reeled in by anyone. Hed spent most his adult life fighting legal cases. Hes 65,
drives a huge black SUV, and favors dark suits with a stars-and-stripes lapel pin.
Hes a guy who likes to know exactly what hes getting himself into.

And so, over the following weeks, Steve, Joe, and Zita drove south to New York
and east to Worcester, Mass., to consult more experts. They flew to Pittsburgh.
They sent scans of Phillipss insides to Maryland, New Jersey, Texas, and
Washington, D.C.

They read scientific papers and old news articles, picked apart statistics from
clinical trials, reached out to patient advocacy groups for advice. They waged
and won a war against Steves insurance companys initial decision not to cover
the procedure.

All the while, Steve was getting intraveneous chemo. He often felt nauseated. But
he slogged on.

When interviewing surgeons, he and Zita and Joe had a standard question: How
many times have you done this procedure?

But they also asked: If you needed this surgery and couldnt go to your own
hospital, where would you go?

The name that kept coming up was Dr. David Bartlett, out in Pittsburgh. He had
been performing this operation since the early 1990s.

Steve made up his mind. The surgery was set for Feb. 19.

Its in Gods hands, Phillips said. Its in Bartletts hands.

8
Stephanie Strasburg for STAT The cutting lasted for hours.

The surgery

The night before the surgery, Steve sat with Joe, Zita, and three of his kids in the
hotel bar across the street from the University of Pittsburgh Medical Center in the
neighborhood of Shadyside.

With rounds of Bud Light, they toasted a successful surgery. They picked at
quesadillas. Steve, allowed only clear liquids, took sips of yellow Gatorade. His
kids helped him put on his hospital bracelet.

His daughter Katie, a bubbly 26-year old who works in insurance, looked at her
dad. Usually, he was something of a ham, telling stories, repeating punch lines,
and banging the table for emphasis. Now, he was holding a cup of Jell-O, half
eating it, half jiggling it around with his spoon. He had hardly said a thing all day.
He was due at the hospital at 5 a.m.

You excited, Dad?

Thats not exactly the right adjective, he said, shaking his head.

9
Eleven hours later, he was anesthetized, his torso shaved, a band placed across
his forehead to monitor his brain activity.

Bartlett stood over him, inserting a camera into a little incision in his upper left
abdomen. A second later, the inside of Phillipss belly appeared on two screens. It
looked arched, like the ceiling in a church, its pink surface overlaid with white.

Pop music was pulsing in the background.

That white plaque, that looks like tumor, Bartlett said.

If there were too many tumors, Bartlett would have to sew Phillips up and send
him home. But what he saw looked manageable.

With a needle-like tool that cuts and burns at the same time, Bartlett began to
make a slit in Phillipss skin, from sternum to groin. A surgeon-in-training wiped
away the blood as it appeared.

The hole was stretched wide and held in place with what looked like a giant
Erector set. Inside, Phillipss intestines were visible, the red loops rising and
falling with every one of his machine-aided breaths.

Close to 9 a.m., Bartlett began to cut away the tumors. He started with a
yellowish fold of fat called the omentum, which covers the abdominal organs. It
jiggled as he ran a gloved finger over it. He could feel that it was studded with
tumors.

He took another burning-and-cutting instrument. This one looked like a barbecue

lighter, and it made a little click as it clamped down over bits of fat. I call this
The Claw, Bartlett said. A few clicks later, the omentum was just a bloody lump
of flesh in a blue container, ready to be sent to pathology.

Then he moved on to the intestines, which glistened like a string of raw

bratwurst.

With these small tumor nodules, they can hide in this stuff very easily, said
Bartlett. He began to cut with the needle-like tool again. The flesh sizzled and
smoked.

10
The lower down on the intestine Bartletts fingers went, the more tumors he
found. Were going to take out some of that intestine he said.

Bartlett snipped tumors out of the peritoneum and off the surface of the spleen.
He sliced the gallbladder out completely.

It was hard to believe anyone could survive such a procedure. Phillipss body
seemed at once delicate and resilient beyond belief. One moment, the surgeon
and his team were yanking at the sides of the wound with the force of
construction workers; the next, they were sewing up a nick in Phillipss intestines
to stem a tiny jet of blood.

Stephanie Strasburg for STAT Bartlett, left, and Georgakis in surgery.

The cutting lasted hours.

The Black Eyed Peas came on. Then the Beatles. Simon and Garfunkel. Adele.

The operating room filled with the sour smell of disinfectant and singed flesh.
Bloodied surgical sponges were scooped out of Phillipss belly and handed over to
a nurse, who kept careful count so that none would be left inside.

11
The atmosphere was one of camaraderie, like a theater troupe backstage. When
they werent asking for instruments, the team talked about their families, teased
each other. Everyone ganged up on the nurse who had switched the music to
oldies, but they were scrubbed in and so couldnt touch the sound system.

At 1:30 p.m., five and a half hours after the operation had begun, Bartlett
straightened. It was almost time for the chemo.

But first, he took an enormous measuring cup of clear liquid and poured it
straight into Phillipss opened-up belly.

It was water, Bartlett explained: For cancer cells that are floating, water does
more than the chemo. He reached inside and stirred Phillipss innards.

The water was suctioned out, and then what looked like two clear garden hoses
were stuck into Phillipss belly, pumping him full of heated chemo. A resident
stood there, using her whole upper body to rock Phillips back and forth, making
sure that the poison got into every last crevice of his abdomen.

She and the surgical fellows took shifts. The rocking didnt stop for 100 minutes.

Bartlett took a lunch break. When he came back, the chemo had turned bright red
with Phillipss blood.

At 3:15 p.m., seven hours after Phillips was wheeled into surgery, and just before
the team was about to close him up, Bartlett made one final pass through his
patients belly.

He paused. His gloved fingers moved over the same spot again and again. Hed
found another tumor, a hard white lump nestled into the pink flesh of Phillipss
intestine. Somehow, he had missed it before.

Im not sure why, he said. We ran the bowel twice and didnt see that spot.
Thats just the nature of these tiny little dots.

He burned it off with a sizzle of smoke.

Bartlett checked the blood flow along Phillipss intestinal tract, poured in a bit
more water to wash out any leftover chemo. And then, with sutures and staples,
the team closed Phillips up and wheeled him to the ICU.

Update: Not long after his surgery, Steve Phillips was back in the ICU and then
back in the operating room due to a series of complications. He had an

12
infection that led to pneumonia, and a leakage in his intestinal tract that needed
to be surgically repaired. He was finally discharged a month after his surgery,
and is now in recovery.

Correction: A previous version of this story misstated the full name of

hyperthermic intraperitoneal chemotherapy.

13
6 December, 2016 | Proudly Brought to you by STAT

Cancer patients face the ultimate choice,

with no room for error
Photos by Matthew Orr

GAINESVILLE, Fla. Three weeks earlier shed been done. Done with the chemo
and the uncertainty and the fatigue that pinned her to a bed where her husband
found her sobbing after he put the boys to sleep. When can I just pull the plug?
she asked.

And now Rachel Lefebvre, 43, and her husband, Fred, were here, at her
oncologists office.

First the doctor would tell them if a last-line chemo drug had slowed the
breakaway growth of her liver tumors. It had, he said, and Fred instantly grasped
his wifes knee. Now, he told them, is the time to take their one shot at one of the
most promising kinds of experimental cancer treatments, known as
immunotherapy.

One shot, and one shot only. Dozens of treatment options. Precious little time to
decide.

Go.

Late-stage cancer patients confront an array of painful decisions, but in the age of
immunotherapy, patients like Lefebvre face an especially torturous one: the
selection of a clinical trial.

Immunotherapy, which harnesses the bodys immune system to attack tumors,

brings with it the hope of significant remission, if not a cure, for some patients.
But clinical trials often exclude those who have already had similar treatments, in
part because researchers are seeking clear indications of a particular drugs
effectiveness.

For patients, that means the stakes on a single decision couldnt be higher. And
many have little data on the drugs to guide them.

1
Rachel Lefebvre and her husband, Fred, meet with her oncologist, Dr. Thomas George.

There are almost too many options on the table, said Dr. Thomas George,
Lefebvres oncologist, who specializes in gastrointestinal cancer and experimental
medicine at University of Florida Health. We have all these really great ideas and
we want to try them all, and, honestly, the first try may not be the right one for
them.

Yet were prohibited, because of how the studies work, from trying them all, he
added. And we dont want to advise wrong and miss an opportunity.

Lefebvres calculus is more visceral.

When the clock is ticking and your cancer is growing and nothing else is
stopping it, you have to jump in at some point, she said.

Immunotherapy treatments have transformed care for certain forms of cancer,

and they have shown promise even for colon cancer, which Lefebvre was
diagnosed with in 2013.

2
But the devil is in cancers details, and Lefebvre is especially bedeviled by hers.

In the most successful immunotherapy approach to date, drugs called checkpoint

inhibitors strip the cloaking mechanism that cancers use to hide from the bodys
immune system. This is how Jimmy Carters melanoma was forced into remission,
for instance.

Checkpoint inhibitors have been shown to work dramatically that is, for some
of the 20 percent to 40 percent of patients who actually respond to the drugs. So
far, that list mostly includes patients with cancers of the bladder, kidney, lung,
and skin and Hodgkins lymphoma, and a tiny fraction of colon cancer patients:
those with so-called microsatellite-instable, or MSI high, tumors.

Lefebvre has microsatellite-stable, or MSS, colon cancer.

In June, however, came results from a small clinical trial involving 23 colon
cancer patients. At least eight with the same condition as Lefebvre responded to a
combination of two therapies that are already on the market for other cancers
one an immunotherapy and another that may target the cancers genetic driver.

That announcement, and early rumors of the trials success, set off a flurry of new
immunotherapy research for MSS-type colon cancer. Roughly 40 trials are
seeking to unlock other successful immunotherapy approaches. Some combine
different checkpoint inhibitors, while others combine those with chemotherapy
drugs or other experimental therapies.

Preparing for her appointment late last month, Lefebvre leafed through a printout
of the trials. Some treatments appeared more promising than others. Some had
waiting lists. Some were closer to her home in Melbourne, Fla., where she and
Fred are raising their sons, Pierro, 12, and Sebastien, 10.

3
Lefebvre and her son Sebastien at their home in Melbourne, Fla.

But most of them excluded patients who have already tried immunotherapy.

You have to choose very wisely, she said. But its a little like eeny, meeny,
miny, moe. Its impossible to make a good decision.

After George gave Lefebvre and her husband the good news on her scans, she set
the list of trials on her lap. Within 40 minutes, they would have narrowed it to
three.

Three options, none of them perfect.

Only around 3 percent of adult cancer patients enroll in clinical trials, and,
traditionally, that reluctance is understandable. The newer experimental drugs
were merely different forms of chemotherapy highly toxic chemicals that might
buy a patient more time, but usually with dismal side effects.

Immunotherapy and other so-called precision oncology treatments, which are

4
tailored to specific characteristics of a patients cancer, are another matter. These
drugs are designed to spare healthy cells and target only malignancies, and
although some can cause serious side effects, patients avoid some of the more
taxing downsides of chemo like hair loss and nerve damage. The potential for
remission, though small, is real.

But many oncologists especially generalists who arent affiliated with teaching
hospitals dont encourage patients to explore trials. Some lack the time to keep
abreast of the latest scientific findings. Others remain skeptical that clinical trials
are worth patients time, or the money required to seek genetic testing, the
foundation for many precision oncology treatments.

My first oncologist was chemo for life, Lefebvre said of the treatment strategy.
I asked her about some other options Id read about. She told me I spend too
much time on Google.

Lefebvre had her tumor genetically sequenced and found another general
oncologist locally who was willing to try other options. She also sought second
opinions from George, traveling three hours to Gainesville each way every few
months to see him. And on the advice of other survivors, she started researching
trials early in her treatment, knowing she would need to be relatively healthy to
qualify.

Even with occasional consultations with George, though, Lefebvre has largely
navigated the maze of clinical trials on her own. For her, and for most patients,
this DIY approach first means an online visit to ClinicalTrials.gov, the
governments database for roughly 52,000 clinical trials (as of last week) across
an array of disease groups.

5
Lefebvre researches clinical trials at her home.

ClinicalTrials.gov is an absolute monster from a patient usability perspective,

said Rick Bangs, a bladder cancer survivor who is cochair of the National Cancer
Institutes patient advocate steering committee. The NIH is working to fix it, but
right now its horribly inefficient.

Patients with colorectal cancer who search for open trials on the site are offered
more than 1,400 different options. The search terms colorectal cancer and
immunotherapy yield 79 open trials. The study descriptions teem with medical
language few patients would understand, and many of the study pages are out of
date, Bangs and others said.

6
Lefebvre researched colorectal cancer advocacy groups and eventually found the
blog of Tom Marsilje, a cancer researcher who is also battling stage 4 colon
cancer (of the MSS subtype). Marsilje has become a go-to source for other
patients in his position, posting trial news, answering questions, and circulating a
list of trials for other MSS patients to consider.

I meet people every day who have their oncologist tell them immunotherapy
clinical trials dont work for colon cancer, and there arent open trials. Both are
completely false, he said. So its really up to the patients to figure out a strategy
for clinical trials, and a vast majority of them dont have the background to make
educated judgments.

Lefebvre has that background, and even she has struggled.

She earned a PhD in psychology and trained at Massachusetts General Hospital,

specializing in trauma and anxiety counseling, which she still practices, though
with shorter-term clients. (Im up-front with prospective clients about my
health, she said.)

On the evening before her appointment with George, she and her husband sat for
a sushi meal. She drank tea instead of wine, to better ease the burden on her
liver.

Outwardly she shows no signs of illness. She has an athletes build, thanks partly
to a youth spent skiing in her native Canada, and recent years practicing yoga
and paddleboarding the inlets near her home with Fred.

7
Lefebvre keeps active, paddle boarding the inlets near her home with her husband.

Of the two, Lefebvre is more the extrovert, punctuating conversations with jokes
delivered with a wink. But when speaking about her likely clinical trial options,
her frustration showed.

One included an immunotherapy combination that delivered promising results,

but only half of the participants were to receive the treatment. The rest were to
receive either a standard chemotherapy or a checkpoint inhibitor already proven
ineffective for MSS-high patients.

Another trial would test the combination plus Avastin, a drug that has worked for
Lefebvre in the past, but it is only open to 33 patients nationally and already has a
waiting list. Another would test around 100 patients with a drug that targets
cancers with specific molecular profiles and has shown results in the lab but
hasnt yet been tested on many humans. For both trials, she would have to travel
to Denver.

New options arise almost monthly, but when, during her appointment with
George, she asked if she had time to wait, he told her softly that she did not.

8
Lefebvre did not outwardly react. Instead she flipped through the spreadsheet of
trials. George patiently guided her through at least six.

If you were my sister or a family member, he said. Id say make a trip to

Denver.

The trip would allow her to simultaneously apply for two good trials: the
combination of immunotherapies plus Avastin, which George labeled Plan A, and
the trial involving the previously untested but promising drug, which he called
Plan B.

Lefebvre asked him about a wildcard option: buying the combination of drugs that
proved effective in the Denver trial and administering them at home. Assuming
her insurance would not cover such an off-label option, it could cost as much as
$20,000 monthly.

George wasnt enthusiastic about it, because he wouldnt know how to adjust the
doses or monitor the treatments according to the trial protocol.

Fifty minutes into the appointment, her questions dwindled. Thank you so
much, she told him. Every time I leave here I never leave hopeless. Theres
always a light somewhere. So its precious.

On the way home, Lefebvre called the researcher leading the Plan A trial in
Colorado. He could not tell her how long the wait list might be.

There were a lot of silences, she said.

The trial would likely open by years end, the researcher told her. If enough
patients drop out because of complications from their disease, or if they go on
other trials first, there could be room for her.

So Lefebvre decided she would find a place to rent in Denver with Fred, while his
parents watch the boys.

She would also sign up for Plan B, and she has not given up on the wildcard
option. (Throughout this process, Lefebvre has been blogging about her
experience.)

It doesnt feel real yet because everything is so up in the air, she said. I havent

9
thought deeply about what itll be like to get into a trial like this, but I know itll
be major changes.

She said both her emotional and physical strength returned in the days after she
broke down with Fred and asked him when she could be done with it all.

The resiliency, she said, may in part reflect her bodys response to her current
chemo treatment, but it also stems from a sense of optimism that has always been
a part of her life.

I think Im psychotically delusional sometimes, but I still think I can get through
this, she said. So I put my face on and I just keep going.

10
6 December, 2016 | Proudly Brought to you by STAT

Deep in the night, hunting deadly bugs

in the name of science
Photos by Ilana PanichLinsman

LEE COUNTY, Texas The hunt took place after dark, on a rickety homemade
radio tower high above the post oak savanna.

The hunter sat in a folding chair encrusted with vulture droppings, waiting for his
quarry. He listened to the yipping of coyotes, the lowing of cows, the ghostly
trilling of a nearby screech owl.

Then he froze. And with a guttural frog-like sound a kind of primal predatory
yelp he lunged forward, his hand darting toward something at his feet.

Bingo, he said. We scored.

The animal didnt look like much: a blackish bug with orange markings on the
back. Trapped between Hugh Browns fingers, it looked about as threatening as a
butterfly in a net.

Yet this insect known as a kissing bug is responsible for killing 12,000
people a year worldwide.

The bug itself isnt toxic, but it likes to crawl onto mammals faces to suck their
blood and it often defecates at the dinner table. Its feces can contain a
worm-like parasite called Trypanosoma cruzi, and if you scratch the bite and
brush a speck of poo into your eye, mouth, or even the bite wound itself, you can
get infected. Thats how you get Chagas disease.

Untreated, the parasite can lodge itself in your heart, spewing toxic enzymes and
killing muscle cells, which harden into scar tissue. Slowly, cell by infected cell,

1
the heart loses its ability to pump blood. The parasite can also destroy tissues in
your gut and your brain.

These bugs and their microscopic stowaways sound too dangerous to play around
with. And thats exactly why Brown had one wriggling between his fingers.

He is a citizen scientist. He isnt employed by a university or a lab, but hes an

essential part of researching Chagas disease in the United States.

In Latin America, Chagas is a public health crisis: millions have the disease, and
only 1 percent of them get adequate treatment. In the United States, the illness is
rare, and transmission even more so: Most of the estimated 300,000 people who
are infected caught the parasite from a kissing bug in Latin America.

Yet those official statistics may be low, because Chagas is often overlooked and
misdiagnosed by American doctors. And the most basic facts about its local
transmission including which strains of parasites are transmitted by which
species of kissing bug in which parts of the southern US remain largely
unknown.

Chagas definitely is acquired in the US, and the more we investigate, the more
we will find, said Dr. Sheba Meymandi, director of the Center of Excellence for
Chagas Disease at Olive View-UCLA Medical Center.

Investigating isnt easy, though. Unlike the species in Latin America, which
swarm houses by the hundreds or thousands, the kissing bugs in the southern US
are solitary, secretive creatures.

So researchers in Texas asked for help. They wanted ordinary citizens to look for
kissing bugs and send them to a lab at Texas A&M University. But who was going
to spend hours hunting for blood-sucking, disease-transmitting bugs?

2
Hugh Brown climbs his sevenstory radio tower to collect kissing bugs.

Brown holds a live kissing bug he caught before putting it in a pill bottle.

3
Winnie the Pooh, naked swims, and blood-sucking bugs

Brown is 68 and and lives about an hours drive from Austin, 10 miles west of
Lexington, Texas or, as he calls it, Dislexington. On Saturdays, the local
entertainment is the cattle auction, where steers and heifers are prodded,
kicking, into a half-moon of dirt, to be bid on by local ranchers. The big ones go
for about $1.35 a pound.

Brown doesnt exactly fit in with that crowd. They look like cowboys; he looks
more like a Byzantine monk. He hasnt trimmed his beard since 1971, and his
hair, which he cuts himself, is reminiscent of Chewbacca. He owns 150 acres, but
he has no cows to graze. Instead, hes let the post oaks and cedar elms grow wild.
Now, its a scrubby forest, full of feral hogs and nine-banded armadillos, with
copperheads hiding in the fallen leaves.

He wanders his land, cataloging every bird he spots, eating the new shoots off the
greenbrier before the thorns appear. He ties his shoes with a knot of his own
devising: It has no loops to get caught in the brush and holds up his socks when
their elastic is shot.

His diet, too, is unlike anyone elses. He eats one full meal a day usually Sugary
Sam canned sweet potato with skim milk powder, water, a sprinkling of almonds,
and some rolled oats to add a bit of chew.

Brown also skinny-dips in a muddy pond, eats watermelon in bed, and works on
his sequel to Winnie the Pooh.

He hasnt always lived out in cattle country. He grew up in Houston, and studied
physics at Rice. Even now, his wife lives in Austin, and he goes there from time to
time. But he doesnt like the city much.

When youre in the city, everything you see is something that somebody sold and
somebody bought. That tends to suggest to your mind limits of thought, he said.
Wild is conducive to original thought.

When he first saw a pamphlet inviting Texans to hunt for kissing bugs, Brown
knew exactly what the researchers were looking for because hed been bitten
by them. He lives in a stucco house that dates to 1932; the bugs come in all the
time. He finds them crawling across his floor and his walls. He finds them in his

4
bed sheets.

Brown tends to turn commitments down, preferring to think and stroll, read and
write without interruption. But for the kissing bug project, he made an exception.

Partially, it was for financial reasons. If he spent 100 hours participating in

scientific research on his land, he could reduce his property taxes by more than
half.

But there was another reason.

I bear a certain grudge against them, he said of kissing bugs. Theyre not my
favorite animals. Biting me is a capital offense. You think about biting me, you
die.

Brown cools off by skinnydipping in the pond on his property.

Baggies of bugs

Enlisting citizens to monitor kissing bugs is hardly new. In 1941, a professor from
Los Angeles put out a can in Arizona mining camps with a sign: Nab that bug at
one cent each for Dr. Wood at City College to keep.

5
In South America, residents of remote villages are asked to keep watch after their
houses are sprayed with insecticide, to see if the bugs come back. The results
have been mixed. The problem is complicated, explained Antonieta Rojas de
Arias of the Center for Development of Scientific Research in Asuncion, Paraguay.
Chagas disease is not a priority for them. The priority is food, water, better
houses.

In the US, the biologists working on Chagas disease at Texas A&M didnt think
theyd need volunteer help. After all, theyre pros at finding bugs that everyone
else would rather avoid. Theyve dragged weighted squares of cloth through long
grass, so that ticks will think its a passing deer or pant leg and grab on.
Theyve designed traps to nab mosquitoes as they wriggle out from their
stagnant-water nurseries.

Yet doctoral student Rachel Curtis-Robles had little luck with kissing bugs when
she started looking in 2012.

It wasnt for lack of trying.

She has crawled into dog kennels with a flashlight, lifting up bedding to look for
the bugs. She has shoveled into wood rat nests at the base of cacti, picking
through the knots of grass. She has strapped on rattlers leg covers that
protect from snakebites and waded into mesquite-filled scrubland.

She has even appeared at predator hunts, where ranchers band together to shoot
pests like coyotes. She comes equipped with a knife, so she can cut out the
animals hearts, looking for signs of infection.

Most collecting trips yielded only a handful of bugs if any at all.

But in the spring of 2013, she got an email out of the blue from some dog owners

6
near the Texas-Mexico border who had lost a number of pets to Chagas disease.

They knew they had kissing bugs and that it was a problem, said Curtis-Robles.
They wanted to get their bugs tested. That was the turning point when I
realized people would be able to send us these bugs.

So she made pamphlets and distributed them at feed stores and gardening shops
and dog shows (dogs are especially vulnerable to Chagas disease, as theyll eat
almost anything, including kissing bugs). Brown saw one of the pamphlets and
started collecting. He was one of hundreds.

A philosophy professor came to the lab, excitedly brandishing an insect hed

found. Students brought bugs into class. Packages poured into the post office:
bugs in baggies, their legs brittle from a stint in the freezer.

Initially, there were a lot of Not Kissing Bugs, said Curtis-Robles, opening a file
drawer packed with sandwich bags of harmless wheel bugs, leaf-footed bugs,
stink bugs, and assassin bugs.

But 3,000 of the bugs she has received in the last three years were indeed kissing
bugs. Of the 700 shes tested for parasites, 63.3 percent came back positive.

The research shows that people are living in close proximity to these bugs and
to the parasites that cause Chagas.

To other Chagas researchers, the project isnt just about mapping the disease, but
also raising its profile in the US. It engages people and increases awareness of
the risks, said Dr. Susan Montgomery, an epidemiologist at the Centers for
Disease Control and Prevention.

They dont want people to freak out, given that the disease is so rarely
transmitted in the US. But the more doctors test for it, the more cases theyll
catch, and the more heart failure theyll prevent.

7
Brown uses binoculars to keep a detailed list of every bird species on his property.

8
Brown keeps the bugs hes caught in recycled pill bottles in his freezer.

On the seventh platform of the tower, Brown hangs a white bed sheet to help attract kissing
bugs.

9
Above the treetops, lying in wait

To collect kissing bugs, Brown walks out to the base of the radio tower behind his
house. The first two stories were built for an offshore oil rig; he bought them to
hold his water tank. Then he just kept building. He uses the tower for his amateur
radio broadcasting, conversing with far-off strangers in Morse code. And, of
course, for bug-collecting.

From the base, he climbs six ladders, squeezing through the holes in each wooden
floor as the drop gets more and more dizzying.

Soon, hes above the treetops. The tower sways with every breath of wind, with
every move he makes. He hoists up a yellow bucket of tools that hes tied to the
end of a rope.

Black vultures like to roost at the top of his tower. He doesnt mind them sitting
above him as he plugs a lightbulb into an extension cord, doesnt mind their stink
as he ties up a bedsheet to create a landing pad for bugs.

Then, Brown sits down with Time magazine and waits.

There is little official evidence that collecting high above the forest is any better
than collecting anywhere else.

But after a hundred hours of kissing bug hunting, Brown has come to know their
habits. They tend to appear less often when he collects on the forest floor. And
they tend not to land on the sheet hes strung up. They like the light, but they
dont like the brightest part, he said. So he scans the cracks in the floorboards,
the shadowy edges. He clambers down a level, peers upwards with a flashlight.

When he finds a bug, he maps its movements, predicting where it will crawl next.

Though the risk of transmission is low, Curtis-Robles asks her volunteers to use
gloves or sandwich bags when catching bugs, lest they get infected by a particle
of feces. Brown doesnt bother.

I tend to grab em around the sides, mostly bare-handed, he said. Then he pops
the bug into an old pill bottle clutched between his knees.

These bugs end up in Curtis-Robless lab in College Station. There, each insect

10
will get as much scrutiny as any weapon collected at the scene of a murder. It will
be put under the microscope. Its hairs will be counted to identify its species. It
will be doused for 15 to 30 seconds in bleach and water. Its abdomen will be
peeled open, with forceps and scissors, and its hindgut scraped out.

Analyzing those tiny intestines is like reading the bugs diary. With DNA
sequencing, the researchers can tell what kinds of animals the bug has been
feeding on, whether its harboring the parasite, and if so, what strain of
trypanosome it is.

In one of Browns bugs, for instance, researchers found not only traces of human
blood but also the parasite.

He decided he should see the doctor.

I said, I should probably be tested for Chagas disease, Brown recalled. He

looked at me and said, For what? He wasnt real familiar with it. I could tell
because he had to look it up right then and there.

That kind of reaction isnt rare in the United States. Last September, the Centers
for Disease Control and Prevention awarded a research team more than $500,000
to raise awareness of the disease, including among doctors. Chagas often causes
no symptoms at first. But the earlier its caught, the more effective the two
existing drugs will be.

Brown turned out not to need the drugs: He tested negative.

Now that hes done enough research to get his tax break, Brown no longer spends
from 9 p.m. to 1 a.m. up on his radio tower every summer night, waiting for bugs.
But he still nabs them whenever he sees them, and puts them in his freezer for
Curtis-Robles. And hes still interested in her findings, just as hes interested in
the myriad unanswered questions that will come to you if you look closely at
cypress trees or insect galls or almost anything else.

11
Brown walks across a plank bridge over a dry creek bed on his property.

What she found out about the infection rate nobody knew that, he said one
night in late July. He had just clambered down from his tower, that nights haul of
kissing bugs crawling around in old pill bottles, soon to be frozen and ready for
dissecting. Now, he was standing in his overgrown driveway, his flashlight clicked
off so he could see more stars. He looked up toward the greenish white mist of
the Milky Way.

Ive been around for 68 years. Thats over 2 billion seconds. And every second
youre alive, you can be learning stuff, he said.

The forest hummed with crickets. There were more kissing bugs out there, he
knew, lurking just beyond where he could see them, attracted by his lights and his
body heat and his breathing.

Behind all of that knowledge is a basic principle, he said. The closer you look,
the weirder it gets.
After a while, he clicked on his flashlight and followed its beam back toward his
house.

12
6 December, 2016 | Proudly Brought to you by STAT

Game of Genomes: An epic quest to

crack the mysteries of our DNA
Episode 1: Man inside the hard drive

scientist recently pointed me out to his colleagues. That is not Carl Zimmer, he
declared.

The scientist was Mark Gerstein. He was sitting at a table in his office at Yale
University, flanked by two members of his lab. Really, Gerstein said, pointing to
a slim hard drive on the table, this is Carl Zimmer.

By this, he meant the sequence of my genome, which was being transferred

from the drive onto a MacBook.

Im quite serious, Gerstein said. In about five minutes, he will be in this

1
computer.

I had come to Yale to give Gerstein and his colleagues my genome to explore. I
wanted them to help me find out what was in there.

I was doing something far different and far more exciting than getting a
conventional genetic test from a doctor or sending my spit to a genealogy
company. Those tests typically only determine snippets of a persons DNA,
providing the sequence of less than 1 percent of the genome. Instead, I had
gotten my entire genome sequenced and had then managed to get hold of all the
raw data the information that scientists use to understand how peoples genes
help make them who they are.

If you could have read the data flowing into Gersteins MacBook, you would have
seen a spreadsheet from hell. Each row contained a string of As, Cs, Gs, and Ts
in various combinations, running a couple hundred letters long, accompanied by a
few cells containing short numbers and codes. All told, there were 1.2 billion
rows.

Watching my genome flow into Gersteins computer made me a little giddy. I

began writing about DNA sequencing in the 1990s, at a time when sequencing the
human genome any human genome seemed about as easy as a manned
mission to Mars.

It took hundreds of scientists and about $3 billion to assemble the first

human genome sequence in 2001. Since then, the cost of DNA sequencing has
crashed, while the accuracy has skyrocketed. Scientists have now sequenced the
genomes of an estimated 150,000 people.

Despite this sequencing explosion, very few of the people who have their genomes
sequenced get their hands on their own genomes. And those few people typically
only get a highly filtered report. To get the raw data, as I managed to do, is
almost unheard of. I am, to my knowledge, the first journalist, to do so.

So over the past several months, I enlisted Gerstein and two dozen other
scientists to help me see whats lurking in my own genome. They have generously
volunteered their time and expertise, acting like scuba diving guides, leading me
through undersea canyons.

2
The experience has revealed to me quite a lot about myself but also, more
importantly, about human genomes in general, and the advances scientists are
making in understanding them.

What have I learned? Ive used my genome to look back a million years to our
pre-human origins. Ive discovered exactly which pieces of DNA I inherited from
Neanderthals and how they may influence my health. Ive learned that I have
extra copies of some of my genes, and Im even missing vast chunks of DNA found
in other people. Ive inspected the three-dimensional shape of some of my
proteins, observing how mutations have changed the way they work and made me
vulnerable to some diseases.

Perhaps just as importantly, Ive learned just how hard it remains for experts to
make sense of anyones genome.

Over the coming days, Ill be unspooling what Ive learned in a series of stories.
Ill also introduce you to some of the countrys leading genomics experts, who are
discovering remarkable things about our DNA. I hope you come along and see
whats hiding in that hard drive.

3
 Episode 2: A code is broken

oon after I decided to get my genome sequenced, I found myself in a hospital in

Boston, with a geneticist staring long and hard at my face.

What Im doing is looking for any facial features that would suggest an
underlying genetic illness, Dr. Robert Green told me, as he gave me an exam at
Brigham and Womens Hospital. The shape of your eyes, whether your ears are
low-set or not. The complexity of your ears.

Green then had me walk back and forth across the office. I felt like a terrier
trotting at the Westminster Dog Show. Green explained that some hidden genetic
disorders leave telltale signs in our gait.

Future clinicians may judge this to be unnecessarily cautious, he said as he

watched me pace. But there is no standard for how we do whole genome
sequencing. So this is how Ive decided to do it.

I had never watched a geneticist improvise before. But improvisation is par for
the course when it comes to genomes. In the history of our species, weve never
had the chance to look at all of our DNA before. Scientists are still figuring out
how our genomes affect our health. And doctors like Green are still working out
the rules for using genomes in medical treatments.

A month before my visit, Green had invited me to get my genome sequenced, as

part of an educational program run by Illumina, the leading manufacturer of
DNA-sequencing machines. We arranged for an exam, and now, having failed to
find anything suspicious, Green ordered a blood draw. My blood was shipped from
Boston to San Diego, where it was sequenced by Illumina. The process, including
my registration at an Illumina-sponsored seminar, cost $3,100.

The Illumina team began the process by cracking open my blood cells and
extracting their DNA. They cant just read the DNA from one end to the other. For
starters, a human genome is so big that it would take too long. The DNA might
also snap apart into pieces during the process.

Instead, Illumina does something counterintuitive: It smashes the DNA into lots of
fragments, makes lots of copies of those fragments, reads them all, and then tries
to put their sequences back together.

To do so, they take advantage of DNAs own capacity to make copies of itself.
Each DNA molecule is actually a pair of strands assembled from building blocks
known as bases. The bases are like the alphabet in which our genes are written.

4
Instead of our 26-letter alphabet, there are only four different kinds of bases in
DNA: A for adenine, T for thymine, C for cytosine, and G for guanine.

When our cells divide, they build a new copy of their DNA. They do so by splitting
the old molecule into its two strands, and then building a new strand for each one.
This process is remarkably simple. Each base can only pair with one other base: A
with T, C with G. To read my DNA, Illumina mimicked this chemistry.

First, the Illumina team broke my DNA into short fragments, each about 340
bases long. Then they made extra copies of those fragments, so they could
sequence each one many times over. To do so, they glued the fragments to a
plate, which they then submerged in a bath.

In that bath were free-floating bases. Gradually, those bases locked onto the
fragments, creating a corresponding strand. And each time a floating base locked
onto a fragment, Illuminas devices could record the reaction. A computer
recorded those reactions, and used them to decipher the sequence of each of the
original strands.

A team of researchers at Illumina then reviewed the data, evaluating my risk for
1,200 disorders, ranging from familiar ones like lung cancer to obscure ones like
cherubism. (Dont be fooled: Cherubism doesnt make you look like an angel. It
fills your jaw with cysts.)

I couldnt help but worry about what they might find. As I approach my 50th
birthday, I feel lucky to be in pretty good health, yet I wonder what the next few
decades have in store for me. On my fathers side, my grandfather died in his 40s
of a heart attack, and my grandmother died a decade later of cancer. My mothers
family has been more fortunate; my grandfather lived to 88, while my
grandmother celebrated her 90th birthday last summer. How, I wondered, did I do
in the genetic lottery?

A few weeks after my visit to Brigham and Womens, I got a call from Sheila Sutti,
a genetic counselor who works with Green. She had my results back from
Illumina.

The reason were doing this over the phone and not in person is that we didnt
find anything of clinical importance, she said. You had a very benign report,
Carl.

Illumina found that I might not respond well to certain medications, but didnt

5
find any firm evidence that I suffered from a genetic disorder. I was also a carrier
for two diseases, I discovered, which means that I had one copy of a mutation that
could make my children sick if they also got the same mutation from my wife. But
since those diseases would have made themselves known when my children were
young, I knew that those mutations were nothing for my family to worry about.

And that was that.

I felt relieved that Sutti didnt have any terrible news for me. But after the relief
passed, the whole experience made my genome seem very boring. That seemed
wrong. I knew that every human genome is infinitely fascinating, if you can just
look into it deeply enough.

Before I had my genome sequenced, I had an inkling that I would be let down. A
few years ago, I was having lunch with Beth Shapiro and Ed Green, a
husband-and-wife team of geneticists at the University of California, Santa Cruz.

You know what you should do someday? You should get your genome
sequenced. Shapiro declared. But then you know what you should do? You
should get your BAM file. If you do that, you can bring it to scientists like us. Then
you can really see whats going on.

I didnt have the courage at the time to admit that I didnt know what a BAM file
was. But now, a few years after the conversation, it was time to find out.

6
 Episode 3: BAM reveals all

BAM file, I learned, is all the raw data that comes out of genome sequencing.
(BAM stands for Binary Alignment/Map.) Its a tremendous chunk of information,
weighing in at 70 gigabytes, the equivalent of over 400 feature-length movies. As
big as it may be, nothing else will do for scientists who want to explore a genome
in its full complexity.

Yet getting your own BAM file, it turns out, can be surprisingly hard.

After Illumina sequenced my genome, it sent me a medical report and a link to a

website where I could peruse its results. It did not simply hand over the BAM file
nor would it if I asked on my own. Delving into its paperwork, I found the
reason why: Illumina states that it will provide BAM files solely for use in clinical
research.

Its not surprising that companies like Illumina are wary of simply handing over
BAM files to the public. In 2007, the genetic testing company 23andMe began
providing genetic tests directly to customers, rather than through a doctor. For
each customer, it identified hundreds of thousands of genetic variants and
interpreted the results to estimate how much risk they put people at for a variety
of diseases. In 2013, the FDA demanded it stop selling the tests because the
agency hadnt validated them.

For its tests, 23andMe looked only at several hundred thousand genetic markers
sprinkled across the genome. A BAM file, by contrast, contains information about
all 3 billion base pairs in a persons genome. Whats more, all that raw data
contains errors that require an expert to weed out. Handing over such a huge pile
of flawed data directly to customers can be a recipe for disaster. Customers
struggling to interpret a BAM file for themselves may mistakenly self-diagnose
themselves and run after treatments they dont need.

But all this caution puts curious people in a difficult spot. Even a genome expert
can be left out in the cold.

Brad Gulko is a graduate student at Cornell, where he is developing new methods

to analyze genomes. For years, hes been squirreling away some of his income
into a fund to pay for his own genome sequencing. He wanted to get his own BAM
file and study it.

I have my hands in this stuff every day, he said. I would love to see where I am
in this spectrum.

7
Gulko waited patiently as his fund grew and the cost of sequencing DNA fell. By
last year, the time was right. In July he contacted a sequencing center about
getting his genome sequenced.

He was informed he could get his BAM file only if he could enroll in a research
study and gain approval for his participation from an institutional review board.
Try as he might, Gulko couldnt figure out how to pull the right strings to get one.
He remains a genome expert without access to his own genome.

Its a little crazy-making to know this information could be had and you cant get
to it, Gulko told me. Youre not allowed to know this stuff about yourself.

If a scientist like Gulko couldnt get his hands on his own genome, what chance
did a civilian like me have? For help, I turned to Robert Green, the geneticist at
Brigham and Womens Hospital who had overseen the sequencing of my genome.
He said he had a workaround. It may be a bit of a clunky process, he warned.

In addition to treating patients, Green is doing research on how genome

sequencing will affect medicine. One of the studies Green is running, called
PeopleSeq, is designed to find out how healthy people respond to getting their
genome sequenced.

Most people in the study are only getting information about their genome filtered
through their doctor. Some are looking at Illuminas carefully curated website.
But Green recently decided to expand the study to let participants get their hands
on a hard drive with their own BAM file.

We have created the protocol to return the hard drives, but have actually never
done it yet! he emailed me. You might be the first.

I joined the PeopleSeq study, and Greens team then asked Illumina for the BAM
file. They also had me sign a form stating that I understood that the data hadnt
undergone the quality checks that Illumina had used to generate my clinical
report.

Green and I first talked about this plan in August. Summer turned to fall, fall to
winter. Finally, in mid-January, a UPS box arrived at my house. Inside was a tube
of green bubble wrap, inside of which was a black fabric case shaped like a kidney
bean. I unzipped the case, and inside I found a hard drive with a brushed-metal
gleam. The process might be clunky, but it had worked.

8
I was ready to enlist scientists to look at my BAM file.

The first to agree to join the expedition was a scientist named Konrad Karczewski
at the Broad Institute in Cambridge, Mass. I realized the BAM file was so gigantic
that I couldnt simply email it to him. The easiest thing to do would be to go old
school. I would deliver my genome by hand.

I put the hard drive back in its bean-shaped case, dropped the case in my
shoulder bag, and hopped on a train to Boston. I became my genomes own
personal courier.

9
Episode 4: Rosetta Stones

unshine poured through a wide window at the Broad Institute in Cambridge,

Mass., illuminating a wall covered in scribbles. Konrad Karczewski, a young
bioinformatics expert, had just spent an hour doodling diagrams to show me how
he had pieced together my genome, which was now displayed on his laptop.

The whole process had taken Karczewski or, to be more accurate, the Broads
servers two weeks to complete.

DNA sequencing is so familiar to us now, in the news and on TV crime shows, that
its easy to get the impression that reading a genome is as simple as pulling a
book off a shelf and thumbing through its pages. In fact, Karczewski showed me,
scientists are still learning how to assemble that text accurately and completely. If
the genome is a book, its written in mysterious hieroglyphics, and scientists are
still inventing Rosetta Stones to read it.

Biology is complex, Karczewski told me, with a resigned shrug. We already

10
knew that, but I dont think I really appreciated how ridiculous the problem is
until I started doing this.

When Illumina sequenced my genome, what it actually did was read the sequence
of 1.2 billion fragments of my DNA. At this stage, these fragments (known as
reads) are like loose jigsaw puzzle pieces waiting to be put together. Making this
puzzle even more challenging, some of those fragments contain mistakes due to
bad chemical reactions.

To solve a jigsaw puzzle, we can refer to the picture on the box it came in, in
order to find a part that matches each piece. Scientists like Karczewski have a
puzzle box of their own, called the human reference genome. Its a highly
accurate sequence of a single persons genetic material. Since all people have
relatively similar DNA, Karczewski could use the human reference genome to
pinpoint the location of many of my own reads.

But because the reads are so short and the human genome is so long, Karczewski
didnt want to simply run a brute-force search for matches. That would have taken
centuries to complete. Instead, using some clever shortcuts, Karczewski needed
only 30 hours to figure out where most of the reads belonged.

Next, Karczewski stripped errors out of the reads. He took advantage of the fact
that Illumina produces so many reads that they overlap on my genome many
times over. If you were to look at a map of my genome at this point, it would
resemble an irregular brick wall, with overlapping reads stacked on top of the
reference genome. Illuminas machines sequence each base on average more than
30 different times.

That redundancy allows Karczewski to spot the errors in DNA sequencing. If one
read has an A at one spot, while the other 30 have a T at the same spot, you can
safely conclude that my genome has a T there.

This process can fix a lot of errors in a genome sequence, but it doesnt work on
many others. If you scan a genome at this stage, you may find a location where
some reads point to an A, some to a C, some to a T, and some to a G. They offer no
clue to what the correct base should be.

This kind of error can be caused by a mutation that chops out a large piece of
DNA, or one that accidentally duplicates it. They confuse computer programs that
try to match reads to the human reference genome; the programs end up pinning

11
the reads to the wrong place.

Fortunately, scientists have recently written a number of programs that can spot
places where insertions and deletions create this confusion. But its no small task
to fix these errors Karczewski needed 15 hours to identify insertions and
deletions in my own genome.

Only after two weeks of this scrubbing and fixing did Karczewski finally allow the
Broads servers to write out my genome sequence. I was then able to give other
scientists access to this new and improved version of my genome, so that they
could explore it.

I came back to the Broad when Karczewski had finished, to inspect his handiwork.
To show me my genome, Karczewski opened a special kind of browser. Think of it
as Google Chrome for DNA. It displayed my genome as a string of bases arrayed
on a line that ran off of either side of the screen. The browser highlighted
stretches of DNA in genes; Karczewski could zero in on any one of them for a
close inspection.

To give me a sense of how good his reconstruction of my genome was, Karczewski

navigated to a gene called HTT.

HTT is not just any gene. Certain mutations in HTT cause Huntingtons disease, a
devastating disease that starts in middle age, leads to dementia, and ends with
death. Unfortunately, these mutations are also very hard to recognize with
standard genome-sequencing techniques.

The problem with HTT is that the mutations strike a region of the gene that is
made up of the bases C, A, and G, repeated over and over. Healthy people have a
wide range of CAG repeats. Its only when people get 37 or more CAG repeats in
HTT that they are at risk of developing Huntingtons. Repeating DNA is very hard
to sequence accurately with short reads, because there arent any distinctive
sequences to anchor them.

When Illumina sequenced my genome, it had not been able to reconstruct my HTT
gene completely. Rather than make a bad guess, it simply left parts of it blank.
When it used my genome to identify my risk for genetic disorders, it didnt even
try to determine if I would develop Huntingtons disease.

But now, thanks to Karczewski, I was looking at a complete sequence of my HTT

gene. If I wanted to, I could just lean forward and count my CAG repeats.

12
You know I should have probably started with a crap-ton of genetic counseling
before we did this, Karczewski said.

Such are the risks you face when you take your genome into your own hands.
Nonetheless, I quickly did some bioethical calculations.

It takes just one defective copy of HTT to cause Huntingtons disease. But none of
my ancestors I knew of suffered from the disorder, making it unlikely they could
pass it down to me. Yet I also knew that about 10 percent of cases of Huntingtons
disease occur out of the blue, the result of a new mutation that adds a number of
CAG repeats to a persons HTT gene. But such events are very rare.

I was pretty confident that I would have a normal HTT gene. But in the unlikely
event that I did have Huntingtons disease, I decided, Id rather know now than
wait to be horribly surprised.

Lets look, I said.

And so we did.

The reference genome has 19 CAG repeats. We counted only 17 in mine.

If Karczewskis reconstruction was accurate, then I dont have to worry about

developing Huntingtons disease.

Whole-genome sequencing is not yet accurate enough to serve as a reliable

medical test for a particular disease like Huntingtons. People who have relatives
with Huntingtons and want to see if they carry the mutation should get precise
tests that determine only the sequence of HTT, ignoring the rest of the genome.

But just because whole-genome sequencing isnt 100 percent accurate doesnt
mean its not valuable. Thanks to the careful assembly by Karczewski and other
scientists, I at last had a reconstruction of my genome that I could explore.

13
Episode 5: Individual Z dissected

walked into a conference room at Yale not long ago to find eight graduate
students and postdoctoral researchers waiting for me on either side of a long
table. They invited me to sit at the head. In front of me, on the opposite wall, was
a giant monitor. On it read the words, Individual Z Overview.

For two weeks, these researchers had been poring over my genome, and now they
were ready to share with me what they had found. I had been gratified by how
eager they had been to help me, but puzzled, too. It was only when I looked up at
the screen that I realized the answer. To them, I was Individual Z.

It was as if I was a frog that had hopped into an anatomy class with my own
dissecting scalpel, asking the students to take a look inside.

The students all worked at a lab run by Mark Gerstein at Yale. I had asked
Gerstein to look at my genome because he has studied thousands of human
genomes over his career. He and his colleagues are experts at making catalogs of
genomes recognizing the genes and millions of other pieces that make them up,
and figuring out how those parts vary from one person to the next. Yet when I
approached Gerstein about my project, he admitted he had never looked at his
own genome this way.

Id never have the courage to do this Im just too timid, Gerstein admitted to
me. Im a worrier. Every time there would be a new finding, Id look in my
genome to see if I had it.

While Gerstein might be too nervous to look at his own genome, he seemed to
take vicarious pleasure in looking at mine. I really want to do this, he said when
I handed him the hard drive with my genomes raw data. I think this is the
future.

Gerstein transferred the data onto his computer and gave the hard drive back to
me. Like Karczewski, Gerstein and his team then used a set of computer
programs to analyze my BAM file and build a highly accurate reconstruction of my
genome. Once they had reconstructed the sequence of my DNA, they could start
identifying the parts that made it up.

The parts of a genome were most familiar with are, of course, genes. Each
protein made by our bodies such as the collagen in our skin and the myosin in
our muscles is encoded by a gene. Our 20,000 or so protein-coding genes take
up only about 1 percent of our genome, however. They are scattered amid vast

14
stretches of so-called non-coding DNA. Non-coding DNA is a mishmash of
different elements. Some of them, like on-off switches for genes, are essential to
our well-being. A lot of them are just along for the ride.

In order to map the parts of my genome, Gerstein and his colleagues took
advantage of the fact that one persons genome is pretty similar to anyone elses.
If you want to find your COL1A1 gene for collagen, for example, youd best look
about midway down your chromosome 17. Thats where it is in everyone else.

But while my genome is a lot like everyone elses, its not identical. When a
scientist like Gerstein sets out to catalog a genome, a lot of his work goes into
tallying up my differences.

When I returned to Gersteins lab for my Individual Z Overview, Fabio Navarro, a

Brazilian postdoctoral researcher with a scruffy beard, kicked things off by
introducing me to a big number: 3,559,137. That is how many positions in my
genome differ by a single base from the human reference genome a single
nucleotide polymorphism, or SNP for short.

For example, I have rare SNPs in a gene called MEFV. At one location in that
gene, the vast majority of people have a base called thymine. But one of my copies
of the MEFV gene has a cytosine at that spot. This variant gives me the rare
distinction of being a carrier for a disease called familial Mediterranean fever,
which causes runaway inflammation. (You need two copies to actually get the
disease.)

It was a struggle for me to think clearly about the 3,559,136 other SNPs in my
genome. I was tempted to think of them as making me an exquisitely unique
genetic snowflake.

Sushant Kumar, another postdoctoral researcher who works with Gerstein,

dispelled that illusion by picking out two people from a database of genomes to
compare me to. One was a person from China, the other from Nigeria. Kumar
found all three of us shared a lot of SNPs in common 1.4 million, in fact. Kumar
and his colleagues cut down my uniqueness even more by searching for my SNPs
in a database they helped build, called the 1000 Genomes Project. They found
over 91 percent of my SNPs in at least one other persons DNA.

This enormous genetic overlap is the result of humanitys sloshing global gene
pool. Every new baby gains a few dozen new SNPs. They can pass on some of

15
those SNPs to their own children. Over thousands of years, the variants spread
from continent to continent.

Gerstein and other scientists want to understand how these SNPs influence our
body. For now, most of what we know about the variations is limited to our
protein-coding genes. But even in that 1 percent of our genome, our knowledge is
limited.

I discovered, for instance, that I have a variant in a gene called HMGA2 that
makes me a little taller. On average, people with my variant are about a quarter
of an inch taller than people without it. But scientists dont yet know exactly how
it boosts the growth of people like me who carry it.

Its likely that variants like the one in my HMGA2 gene influence my biology by
changing the shape of my proteins. When proteins change shape, they work
differently. During my visit with Gersteins team, one of his graduate students,
Declan Clarke, provided me with a startling demonstration: He showed me the
shape of some of my mutant proteins.

One of my mutations changes the shape of an enzyme in my liver. Our livers keep
our blood clean by breaking down potentially harmful molecules so that they can
get flushed out of our bodies. One of those enzymes, called NAT2, helps break
down caffeine and other toxins with a similar molecular structure.

I have a variant in my gene for NAT2 that changes the enzymes shape. Clarke
showed me how a pocket on my enzyme has an odd bulge. That bulge changes the
way my NAT2 enzymes behave. In most other people, that pocket repels water
molecules. In mine, it attracts them.

As a result, my NAT2 enzymes work slowly, allowing toxins to build up and linger
longer in my body. Making matters worse, my defective pocket raises the risk that
NAT2 enzymes will stick to each other, or to other proteins. To protect me from
this damage, my cells destroy a lot of my NAT2 enzymes.

Lets say you have an old beat up car and youre driving it around on the road,
said Clarke. Its like the other proteins are saying, We have to impound this
thing.

While getting rid of a lot of my NAT2 enzymes may reduce my risk of dangerous
clumping, it also leaves me with even fewer of them. As a result, I end up doing
an even worse job at breaking down certain toxins. And its not just toxins that

16
can pose a problem: NAT2 helps break down certain medicines, too. Geneticists
have found that my variant puts people at risk of bad side effects from those
drugs.

While some mutations alter proteins, others destroy them. They disrupt genes so
badly that our cells cant use them to make any functional proteins at all.

A broken gene (technically known as a loss-of-function variant) can be a very

dangerous thing. If you dont have a functional F8 gene, for example, you cant
make an essential clotting protein. You get hemophilia and can bleed to death
from a little cut.

In my own genome, Gerstein and his colleagues discovered 13 genes in which

both copies appear to be broken. I have another 42 genes in which only one copy
looks like its defunct.

It may sound strange that my genome has dozens of broken genes that cause me
no apparent harm. If its any consolation, Im no freak. The 1000 Genomes Project
revealed that everyone has a few dozen broken genes.

Our genomes are not finely engineered machines that cant tolerate a single
broken flywheel or gear shaft. Theyre sloppy products of evolution that usually
manage to work pretty well despite being riddled with mutations.

Ive probably passed down some of my uniquely broken genes to my children.

Perhaps, long in the future, one of those broken genes will become more common
in humans, and end up in every member of our species. Thats certainly happened
in the past. My genome catalog includes about 14,000 genes that have been
broken for thousands or millions of years, known as pseudogenes. Once they lost
the ability to make proteins, they simply became extra baggage carried down
from one generation to the next. Thanks to a genetic roll of the dice, they ended
up becoming common. Now these 14,000 pseudogenes are found in all humans
today.

Its neat this is evolution in process, Gerstein said. The unbroken continuum
from my own broken genes to humanitys shared pseudogenes is testament to the
long, error-filled journey that produced our complicated, baffling genomes today.

I left my Individual Z Overview with a sense of how SNPs can change my proteins,
and thus change my biology. But now that I had an assembled, catalogued
genome, I knew that there was still a lot more to explore. There were pieces of

17
non-coding DNA in my genome that influence my health. There were huge pieces
of DNA that have vanished from my genome. I could even discover mutations that
protect me from diseases. To join me on this next stage of the adventure, come
back for the next installment.

(Some of the scientists who analyzed my genome kindly provided their technical
results, which you can see here.)

In Game of Genomes, STAT national correspondent Carl Zimmer takes a

narrative journey through the human genome his own. The first journalist

18
known to have acquired the raw data of his own genome, Carl spent months
interviewing leading scientists about the latest in genome research to learn more
about himself and about human genomes in general. This project will run in three
parts.

Credits:

Story editor: Jason Ukman

Multimedia editor: Jeffery DelViscio
Visuals editor: Alissa Ambrose
Illustration: Molly Ferguson
Animation: Dom Smith
Web development: Corey Taylor, Ryan DeBeasi, Jim Reevior
Project manager: Tony Guzmn
Copy editor: Sarah Mupo

19
6 December, 2016 | Proudly Brought to you by STAT

Google misfires as it aims to turn science

fiction into reality
MOUNTAIN VIEW, Calif. Google employees, squeezed onto metal risers and
standing in the back of a meeting room, erupted in cheers as newly arrived
executive Andrew Conrad announced they would try to turn science fiction into
reality: The tech giant had formed a biotech venture to create a futuristic device
like Star Treks iconic Tricorder diagnostic wizard and use it to cure cancer.

Conrad, recalled an employee who was present, displayed images on the rooms
big screens showing nanoparticles tracking down cancer cells in the bloodstream
and flashing signals to a Fitbit-style wristband. He promised a working prototype
of the cancer early-detection device within six months.

That was three years ago. Recently departed employees said the prototype didnt
work as hoped, and the Tricorder project is floundering.

Tricorder is not the only misfire for Googles ambitious and extravagantly funded
biotech venture, now named Verily Life Sciences. It has announced three
signature projects meant to transform medicine, and a STAT examination found
that all of them are plagued by serious, if not fatal, scientific shortcomings, even
as Verily has vigorously promoted their promise.

The Tricorder, as Conrad and others at Verily call the device, is in the realm of
not only science fiction, but beyond that science fantasy, said David Walt, a
Tufts University chemistry professor and nanoscience expert who met with Verily
scientists and engineers last year to share his concerns. And Im not sure it will
ever be science reality.

1
The company has also touted a glucose-sensing contact lens as a substitute for
frequent blood tests on diabetics, but independent experts said it is scientifically
dubious at best.

It claims a billion-dollar Baseline study of human health will define what it

means to be healthy and help identify early signs of disease. But researchers said
design weaknesses make these lofty goals far-fetched.

Largely through Verily, Google has positioned itself to be a giant in life sciences
by marrying technology and big data with science to cure diseases that have, so
far, defied the best minds. But its setbacks and prominent scientists skepticism
call into question this vision of the future of medicine.

Verily insists it is forging ahead with the projects, though Conrad, the companys
CEO, and other executives are well aware of outside scientists criticism.

Conrad and other Verily leaders declined interview requests. But in a written
response to questions from STAT, the company strongly defended its record,
saying its projects were selected specifically because they are inherently
difficult. We, together with our partners, believe that we have technology,
expertise, and insights that might make success attainable on very challenging
projects.

Still, Verily acknowledged, As with all true innovation, some projects can and will
fail.

STAT previously documented a significant departure of top talent from Verily

under its divisive leader, Conrad, and ethical and conflict-of-interest concerns
regarding Baseline. In more recent interviews, some former employees said they
had voiced doubts about projects Verily was pursuing and had been frozen out of
decision-making, while their concerns were brushed aside.

Verily appears to be having more success with less world-changing projects, but it
still chooses to showcase its most ambitious ones perhaps, some critics
suggest, to promote itself as a company poised to defeat disease.

2
One needs to balance how much these toys are used mostly for marketing and
for giving a sense of a company really working on something impressive the
brave new world or if were talking about something that will have clear and
immediate clinical impact, said Dr. John Ioannidis, a professor of disease
prevention at Stanford University. The latter is very hard to imagine.

Its axiomatic in Silicon Valleys tech companies that if the math and the coding
can be done, the product can be made. But seven former Verily employees said
the companys leadership often seems not to grasp the reality that biology can be
more complex and less predictable than computers.

They said Conrad, who has a PhD in anatomy and cell biology, applies the
confident impatience of computer engineering, along with extravagant hype, to
biotech ideas that demand rigorous peer review and years or decades of
painstaking work.

Verily said in response to this criticism that it has hired many seasoned and
respected industry, academic, public health, and regulatory veterans who
understand the complexity of biology and how long it takes to move from idea to
device and/or therapy.

But Chad Mirkin, a Northwestern University biosensor and nanotechnology

expert who has reviewed public statements and patents on the Tricorder,
questioned whether the company had really internalized the fact that in the life
sciences, a concept without a well-vetted technological pathway or rationale
rarely succeeds.

Thats a type of Silicon Valley arrogance, he said. That isnt how science
works.

Dom Smith/STAT

3
STAR TREK vs. REALITY

Googles leap into the life sciences was just three months old when Conrad
announced the Tricorder to his new colleagues. The company hadnt yet
developed expertise to critically assess the projects scientific merits, but he
revealed no doubts.

It was pure Conrad, former Verily managers said: Boast now, build later.

The biotech venture was housed in Google X the companys incubator for
radical projects to solve big problems which had rolled out the self-driving car
and Google Glass eyeglass computer. So its engineers understandably reasoned,
Why not a Tricorder? one of the former managers said.

He and other former or current Google or Verily employees and contractors spoke
to STAT on the condition they wouldnt be identified because they signed
nondisclosure agreements and wanted to protect ongoing relationships with the
companies.

The self-driving car and other Google X projects were created in secret and vetted
by experts for years before anyone outside the tight circle of inventors got so
much as a peek. But with his characteristic informal charm, Conrad rolled out the
Tricorder to tech reporters in 2014, describing its scientific basis as proven. He
predicted that high-risk patients would begin wearing the device within a few
years, followed by widespread adoption.

Conrad said a patient would swallow a pill full of magnetic nanoparticles

engineered to grab on to tumor cells floating in the bloodstream and light up
when they do. A wristband magnet would concentrate the particles and their

4
captured cells inside adjacent veins, then periodically read their fluorescent
signals. Conrad said most of the system operated seamlessly in the lab.

Weve done a lot, to be quite humble about it. Enough to give us great
confidence that this is all likely to work, he told Backchannel, an online journal.

The particles were so safe, he said, that animal testing could be skipped. Conrad
provided no details beyond conceptual patents, and Verily scientists have
published no scholarly papers on the device. Still, media coverage portrayed
Googles upstart biotech venture as the vanguard of a medical revolution.

Walt, the Tufts nanoscience expert, was skeptical when he saw the media
coverage of the Tricorder, and offered to share his expertise with a friend, Jeff
Huber, who was then a Google X executive. Huber, now head of Grail, a startup
also focused on detecting early signs of cancer, invited Walt to visit Verily last
August.

The Verily team listened carefully to Walts concerns during two hours of
discussions, he said in a recent interview, and he came away impressed with the
companys scientists and engineers but not with the Tricorder.

Bruno Vincent/Getty True science fiction, the Tricorder was used as a medical scanning and
diagnostic device in the television series, Star Trek.

5
What (Verily is) really good at is physical measurements things like
temperature, pulse rate, activity level, Walt said. They are not particularly good
at the chemical and the biological stuff.

He ticked off challenges confronting the Tricorder team.

Accurately detecting incredibly rare tumor cells via remote sensors would require
a real transformation in our capabilities from where we are today, he said.
Getting nanoparticles to circulate for long periods would be tough, because the
body directs them from the bloodstream into the liver or other organs.

Cancer cells also can absorb nanoparticles, obliterating their detection powers.
Magnetic tracking might cause clots by altering blood flow, Walt said, and the
Tricorder would require years of animal and human safety testing, contrary to
Conrads assertions.

Walt also questioned whether the continuous monitoring Conrad proposes offers
advantages over safer, promising alternatives, such as testing blood samples for
early signs of cancer. A number of companies are racing to develop this liquid
biopsy technology, though it, too, faces challenges. (Walt is scientific founder of
Quanterix, a Massachusetts firm that builds related diagnostic tools.)

Stanfords Ioannidis raised a different concern. Screening asymptomatic people

(for cancer) has met with so many failures and so many problems including
overdiagnosis, he said. For example, a few stray cancer cells in the blood are
thought to be common in people, but might pose no significant risk of future
disease. Inevitable errors in test sensitivity false-positive results could
suggest cancer when none is present, leading some patients to needlessly

6
undergo treatments that can cause harmful side effects.

In its written statement, Verily sounded far more cautious about the Tricorders
prospects than Conrad has been, saying the very early-stage project is
ambitious and difficult, with unsolved technical challenges. Its our aspiration,
with our partners, to solve these challenges, even if it takes years.

In recent months, four former Verily employees said, the Tricorder has been seen
internally more as a way to generate buzz than as a viable project.

Dom Smith/STAT

CLOUDED VIEW

Google cofounder Sergey Brin has said the glucose-sensing contact lens is the
idea that inspired Verilys formation, and the company features the product on its
website as an example of small devices its building that fit more easily into daily
life.

But a former Verily manager recently called the lens slideware a Silicon
Valley term for breakthroughs that exist only on PowerPoint images.

Thats not how the company framed the technology in a January 2014
announcement about the lens. (W)eve completed multiple clinical research
studies, which are helping to refine our prototype, Chief Technical Officer Brian
Otis said in a news release.

The claim suggested that the project was on the road to solving one of the most
vexing problems faced by millions of diabetics: The frequent need to draw blood,
then measure its glucose level, to calibrate diet and insulin intake. It looked like
Googles life sciences startup might reinvent the $10 billion diabetes monitoring
market.

The company indeed produced a prototype, but it didnt work, the former
manager told STAT.

John Smith, a chemist and former chief scientific officer of the LifeScan division of
Johnson & Johnson, said the 2014 announcement created enormous buzz, but he
greeted the news skeptically. He knew that University of Maryland researchers
had announced glucose-sensing contacts in 2003, and that in 2009 other
researchers applied for a patent on a lens similar to Verilys, using integrated
biosensors. Neither reached the market.

7
Smith has evaluated more than 30 noninvasive technologies that measure
glucose from sweat, saliva, and tears. I saw people working on this, and time
after time after time, failing in the same ways or in entirely new ones, he said in
an interview. They all faced a problem no technical advance can overcome, Smith
said. None of those fluids offers glucose readings that reflect the levels of glucose
in blood.

Glucose levels in tears fluctuate with ambient temperature, humidity, and other
factors, he said, calling its correlation with blood glucose readings very, very
poor. A paper in the British Journal of Ophthalmology authoritatively
demonstrated the problem in 1980.

Former employees said visiting scientists have warned Verily about the apparent
fatal flaw with using tears to monitor glucose. But in response to STAT questions,
Verily wrote that Tear/blood glucose correlation is an open scientific/biological
question, with conflicting data, and that it is trying to improve on flawed
tear-collection methods that might have skewed earlier findings.

(T)here is always a new adherent who thinks all the measurements that went
before were wrong, Smith said in an email. This kind of faith-based science has
proven to be very expensive, and should not come from companies like Verily; but
then, cost does not seem to be an issue there.

In July 2014, Conrad partnered with Alcon, a division of Novartis, to

commercialize the lens. We discussed the challenges in detail with
Novartis/Alcon before launching our collaboration, Verilys statement noted.

Alcon spokesperson Kara Peterson said in an email that the glucose-sensing lens
continues to make steady progress and remains in the research phase. She
declined to comment further.

8
Jason Henry for STAT Dr. Jessica Mega, chief medical officer of Verily, leads its Baseline
study.

SPECK OF DUST

The Baseline clinical study, slated to begin enrolling subjects this year, has the
audacious goal of defining what it means to be healthy and finding very early
signs of cancer and heart disease.

Baseline will help create a new way of thinking about human systems biology,
Dr. Jessica Mega, who heads the project, said in an April interview. Ideally, she
said, it will discover new markers of disease that can inform clinical studies to
develop cures even before symptoms arise.

Over five years, it will collect a raft of information including psychosocial,

molecular, imaging, genetic, and microbiome data from 10,000 people, some
healthy, some with a history of heart disease or cancer. That seems like a big
number, but experts on designing such studies said the project isnt big enough to

9
meet its goals.

Former Verily employees and contractors, and independent experts, pointed to a

number of flaws. Among them, Baseline could become mired in trivial or false
patterns found in the data.

Biology is really complex. People operate with very different software codes,
Tuftss Walt said, noting much of Baselines data would vary minute to minute due
to subjects emotional stress, inflammation, and other factors.

Stanfords Ioannidis said Verily has hired excellent people and has contracted
with some of his Stanford colleagues to collaborate on Baseline, which might yield
interesting ideas. But the study is too small, and five years too short a duration to
uncover anything clearly meaningful about very early signs of cancer or heart
disease. Healthy subjects would suffer few serious illnesses.

Compared with observational studies involving hundreds of thousands of subjects,

Ioannidis called 10,000 a speck of dust.

David Hunter, acting dean at the Harvard T.H. Chan School of Public Health,
agreed that Baselines scale was too small for its described goals. Hunter is an
investigator for the influential Nurses Health Study, an examination of chronic
disease in more than 275,000 women over the last four decades.

A former Verily manager said such observations echoed what several outside
experts said in meetings with top Baseline officials as the project was being
designed. At the time, Verily executives ignored or discounted the concerns, the
former manager said.

Hunter and Ioannidis said they were supportive of Baseline as a potentially

fascinating exercise that might generate interesting research questions. But they

10
held out little hope that it would lead to broad clinical understanding or
breakthroughs, despite Googles world-class skill mining complex datasets with
artificial intelligence software.

We already have quite a lot of experience in the last 10 years working with
multidimensional data. If you look at how much of that has moved to clinical
application, its close to nil, Ioannidis said. The few useful discoveries affected
just handfuls of patients, he added.

Verily is trying so far, without success to gain corporate partners to

underwrite the study in exchange for exclusive, early looks at the data to sift for
novel drug-development prospects.

Baseline might adapt and expand over time, Verily said. While we agree that
larger, broader studies also have value, it is designed to collect a rich, deep
dataset that we hope will be leveraged by the broader life science community for
years to come.

SELLING GOOGLES BRAIN TRUST

As Verilys most ambitious, futuristic, and talked-about projects stumble, some of

its more modest ventures are quietly showing promise.

In April, Verily Chief Scientific Officer Vik Bajaj said Verb Surgical, a joint venture
recently formed with Johnson & Johnson to compete in the crowded robotic
surgery market, is working on novel imaging methods. These include ways to help
surgeons reliably remove tumors by using fluorescence to highlight the cancer or
the margins around it.

Dr. Ken Drazan, a former Johnson & Johnson executive who recently joined Grail,
helped create Verb and praised Conrads management. When (Conrad) sees that
something isnt working properly, he becomes maniacal about correcting it,
Drazan said. Trying to create a life sciences company inside a software company
is no trivial challenge. Hes probably one of the few people who has a reasonable
shot at it.

Verily is also working with Dexcom, maker of a glucose monitor that attaches to
the abdomen, continuously samples a patients blood through a fine needle, and
sends readings to an external device. Verily is shrinking the product for patient
comfort, and improving data transmission and analysis.

11
Dexcom executive Jake Leach said a new monitor might be on the market in two
or three years, thanks to Verilys deft work.

And even troubled projects sometimes yield valuable secondary prospects. The
electronics designed for the glucose-sensing contact lens could be deployed for
autofocus lenses another Verily project licensed by Alcon. According to Alcon,
autofocus is moving toward clinical trials.

Former Verily managers and others connected with the company said Verily
doesnt need blockbusters to find paying customers and can even sell some
apparent duds because its as much in the relationship business as in biotech.
Verily owns the franchise for selling to life science companies the coveted links to
Googles brain trust and its Android operating system.

Pharmaceutical and device partners get an instant image boost among

shareholders and market movers in an era of great expectations for big-data
biotech. Some former Verily managers called this the primary motivation behind
the Novartis/Alcon deal.

Being associated with them and their ability to gain access to technology is key,
and a big part of Dexcoms decision to pay Verily up to $100 million, Leach said.
Its a pipeline to big Google.

VAPORWARE CULTURE

All the hype around Verily has led some scientists and biotech industry experts to
dare compare Verily to Theranos, the troubled blood-testing firm whose CEO
Elizabeth Holmes became a media star and billionaire on paper before a series of
Wall Street Journal articles cast doubts on its core technology.

UC Berkeley business professor Jo-Ellen Pozner said most biotech firms operate
stealthily at first, and when they court publicity, they generally have some
muscle to back it up. Theranos and Verily are exceptions. Their high-profile,
media-savvy leaders made big claims without peer-review validation or real proof.

12
Conrad, who has a sign on his desk saying do epic shit, told a tech reporter in a
2014 interview that his nascent firm was punching way above our weight, and
we may have a chance to turn this battleship of health care around.

I think about it as the vaporware culture, Pozner said, using slang for
announced technology products that dont actually exist a ploy often used to
scare competing firms away from a market opportunity.

Verily said that it prefers to avoid early disclosures, but that sometimes external
events force its hand, such as a patent filing that would have revealed elements of
the Tricorder in December 2014.

Part of the Silicon Valley ethos is about changing the world, about disruptive
technology, about ignoring existing business models, and taking on grand
challenges, Pozner said.

Thats admirable, she said, but in Verilys case, it also feels pretty quixotic.

Back in June 2013, when Conrad announced the Tricorder project to 500 cheering
employees, he made a promise aimed at spurring his team to think bold. Whoever
proposed the best life-sciences idea, Conrad said, would win a vacation at his
lavish home in Hawaii. Cure cancer, get a trip to Hawaii, some joked afterward.

No prize has been awarded.

13
6 December, 2016 | Proudly Brought to you by STAT

Disqualified after concussions, college

football players recruited back onto the
field
SYRACUSE, N.Y. The play that would be A.J. Longs last at Syracuse University
ended with the sophomore crouched on the field, wracked with pain and cradling
his throbbing head.

The quarterback had suffered his third concussion during a practice in October,
when he collided with a charging defensive lineman who outweighed him by
almost 100 pounds. He awoke the next morning in a fog, unable to tolerate even
the dimmest light.

Six days later, Long was told by the school doctor that he was off the team
because of his history of concussions.

When you hear those words, and its the final verdict, it hurts, Long said.

He told me some alarming things. Like by the age of 45 there is an increased risk
of dementia.

But where Syracuse officials saw grave risk, other colleges saw opportunity.
Coaches from a half-dozen other universities began wooing Long.

His case is not unique. College football players with a history of incapacitating
concussions are allowed to transfer to colleges that will permit them to play, a

STAT investigation has found. This happens even after doctors at one school
determine that the risk to a players health is so severe that he should be
permanently banned from contact sports.

If [you] want to go somewhere else, you can find someone to clear you for
virtually anything, said Randy Cohen, the head athletic trainer at the University
of Arizona. The risk assessment for each institution is different.

1
Mike Groll/AP Syracuse University quarterback A.J. Long passes against Florida State during
the second half of a game in October 2014.

The National Collegiate Athletic Association sets no limits on the number of

permissible concussions. Theres no medical consensus on how many concussions
pose an intolerable danger to athletes. And colleges, ever on the lookout for talent
that will reap their teams wins and ticket sales, decide on their own when, or if,
players should be medically disqualified.

In interviews with doctors and college officials, STAT found cases in which some

2
players were permanently sidelined after three or four concussions, while others
with as many as 10 concussions were allowed to still play.

Take the striking case of one of Longs Syracuse teammates, Luke Arciniega. In
2010, Arciniega was disqualified from the University of Nevada after suffering
concussions. After more than a year away from football, he began playing for a
junior college in California, then moved on to Syracuse. Arciniega suffered
another concussion in October, and Syracuse then barred him from playing there.
He is now done with football.

While he has no regrets, Arciniega said in an interview that he worries that his
multiple concussions might haunt him later. Being disqualified two times in my
college career, of course I think about it, he said. I think anyone who plays this
sport will have something down the road.

There are about 70,000 college football players, and a 2014 report by the NCAA
revealed that nearly 1 in 10 players reported suffering multiple concussions
during their college career. Multiple concussions make athletes vulnerable to
long-term brain damage from the head trauma.

The NCAAs chief medical officer, Dr. Brian Hainline, said that in his own
neurology practice, he has recommended that athletes stop playing, only to have
them seek second or third opinions from doctors who disagree. We are not at a
place in society generally, and the NCAA in particular, to state that there is a
universal bar that everyone must adhere to regarding ability to play, he said.

Once college athletes are disqualified, they receive little guidance about what to
do. Young men like the 19-year-old Long are left on their own to seek additional
tests and evaluations by concussion experts and to choose whether pursuing
their dream of playing college football is worth jeopardizing their health.

I was very confused, Long said of the conflicting signals from Syracuse and
other schools about whether he should play. It all wasnt making sense.

In interviews over the last two months with Long, his family, his teammates, his
doctors, and officials at Syracuse and other colleges, STAT chronicled the twists
and dilemmas he confronted. Ultimately, the sophomore would decide that no
matter what they told him at Syracuse he would not give up football, even after
his plan was denounced by his own coach and strangers on social media.

The shuffling of players with concussions from one school to another is rarely

3
discussed.

The NCAA, whose football championship game Monday night will draw millions of
viewers, has touted its efforts to limit concussions and improve player safety amid
mounting public concern. It has banned above-the-shoulder hits on defenseless
players, and required schools to follow standard protocols for detecting and
treating concussions.

But the NCAA said it doesnt keep track of medical disqualifications or how many
sidelined players have transferred to play football elsewhere. Most of the schools
that make up the lucrative, upper echelon of college football refused to release
even basic information about disqualifications.

The college football world is dominated by the 65 schools that are members of the
Power Five conferences the Southeastern, Big Ten, Atlantic Coast, Pac-12, and
Big 12. STAT asked each of the schools in those conferences for the total number
of athletes disqualified in each of the last five years, the sports they played, and
the injury involved.

Only nine universities provided any information. Just two schools Washington
State University and the University of Illinois provided all of the data. Most of
the universities said disclosing even aggregate information on medical
disqualifications would violate federal laws on student privacy and the release of
medical records.

The lack of information makes it difficult to determine how many players have
been able to continue their college careers elsewhere after being medically
disqualified. But using information from the few schools that disclose
disqualifications, STAT identified a half-dozen athletes playing on other football
teams or in the process of moving to other schools after being medically sidelined.

One of those is another of Longs former Syracuse teammates, Kyle Knapp, who
was disqualified in 2014 after multiple concussions but will play this year for
Western Michigan University. Former University of Arizona linebacker Dakota
Conwell, who was banned from play in 2013 after suffering multiple concussions,
transferred to West Liberty University in West Virginia, where he has been the
starting quarterback the past two seasons.

But an Arizona teammate of Conwell, disqualified at the same time for

concussions, decided to end his career. C.J. Dozier said he was tempted by an

4
offer from a University of Oklahoma coach to be evaluated by their doctors, but
ultimately concluded that returning to football would pose too great a risk to his
long-term health.

You have to swallow your pride and give in, he said. Its about your future.

John Miller/AP, Sandy Huffaker for STAT, Jeff Swensen for STAT Clockwise fromtop left: The
University of Arizonas C.J. Dozier (9) helps Dakota Conwell (23) as they stretch before a game at
Arizona Stadium in September 2012. Dozier stands at a park near his home in San Diego. Dozier
suffered a series of concussions playing football at Arizona and decided to step away from the game
due to a fear of longterm health issues. West Liberty University quarterback Dakota Conwell at his
home in Pittsburgh.

5
Conwell suffered multiple concussions through high
school and then in college while at Arizona. After taking some time off, he
returned to football.

Soon after he committed to the university in his junior year of high school, A.J.
Long had Syracuse tattooed across the inside of his right bicep. That way, every
time he cocked his arm to throw, people would see his schools name.

Rated the 15th best player nationally at his position by ESPN, Long rebuffed offers
from higher-profile programs, including the University of California, Los Angeles.
He was comfortable on the upstate New York campus, having visited several
times to see an older cousin who played for the team.

Long said hes been a football junkie since first putting on a uniform as a
scrawny 6-year-old in Bethlehem, Pa. When he wasnt playing, he was watching
other games or studying ways to make himself a better player. Football defined
him. It provided him a stage to prove he was special. It bonded him with his
father.

Ace Long was himself a celebrated high school player in eastern Pennsylvania
with dreams of playing college football. But during his senior year of high school,
his first wife became pregnant with A.J. and he joined the Marines to provide for
his young family. The couple divorced when A.J. was still a young boy.

A.J.s father managed every aspect of his sons football development. He coached
him, selected personal trainers, and traveled with him to camps across the
country so he could face top competition. That is what our relationship was built
on, said A.J.

At times, his fathers intensity strained the relationship. He could be harshly

critical, and A.J. had a hard time letting go of stinging words. Before the start of
his junior year of high school, A.J. decided to move to Tennessee to live with his
mother. He didnt consult his father.

Nonetheless, the senior Long rarely missed his sons games, making the 24-hour
round-trip to Lebanon, Tenn., nearly every week during the season. In the end,

6
the move strengthened their bond.

He was not trying to coach me, A.J. said. He was not trying to be anything but
my Dad.

In his freshman year at Syracuse, Long made a splashy debut against Florida
State University, then the top-ranked college team in the country. Entering the
game to replace the starter, he passed for two touchdowns. His performance was
hailed as a sign of hope for a flagging program, and the local newspaper observed
in Long a bravado that makes him magnetic. The next week, after a victory over
Wake Forest University, he was named Atlantic Coast Conference Rookie of the
Week.

In the offseason, however, his prospects waned. Long injured his hand, limiting
some of his training. A senior quarterback was returning from an injury and was
expected to be named the starter again. More importantly, as Long saw it, the
coach who recruited him had left Syracuse. As the 2015 season approached, there
was talk of Long changing positions or sitting out the year, or transferring.

Not long after, he suffered his third concussion.

Matthew Orr/STAT Ace Long (left) and his son, A.J., at their home in Easton, Pa.

7
Long feared he might get bad news when he was summoned to the head trainers
office on Oct. 13. He had been confined to his apartment for six days with a
pounding headache, unable to go to class.

Other players had been dismissed from the team after a third concussion, the
result of what athletes understood to be a three-strikes-and-you-are-out policy at
Syracuse. But he wasnt prepared for the finality of the moment.

Long said team physician Dr. James Tucker told him he was disqualifying him and
put down in front of him a press release the school would be sending out
announcing the end of Longs career.

He told me from his professional opinion it would be best if you didnt play
football anymore, Long said. The doctor said he was concerned that Longs
concussion symptoms had lasted for days and warned him future hits could harm
him later in life.

In studies, multiple concussions have been found to be associated with an

increased risk of depression and reduced cognitive performance. Most
frightening, repeated blows to the head have been linked to chronic traumatic
encephalopathy, or CTE, which results in dementia-like symptoms.

The disease has been discovered in the brains of dozens of deceased football
players, including Hall of Fame linebacker Junior Seau, who committed suicide in
2012, and former NFL star and broadcaster Frank Gifford. The research is not
definitive, however.

The doctors comments left Long reeling. Cast off the team, he felt like the
unwanted third child, he would say later. He walked back to his apartment and
climbed into bed, eventually falling asleep. Part of me wished it was a dream, but
the reality was I knew it wouldnt change, he said. He figured there was nothing
he could do about his situation.

In interviews with local reporters over the next few days, Long didnt question the
decision. He detailed the headaches, the disorientation, and sickness he felt after
his concussions. The first happened in high school, when he was kicked in the
head during football practice. The second was a freak accident, just before the
start of his freshman year, when he fell out of bed and hit his head on a desk. He
said he planned to stay at Syracuse and get his degree.

8
Alex Hogan, Hyacinth Empinado/STAT Concussions, or even more mild, repetitive
head trauma, may lead to a degenerative brain disorder called Chronic Traumatic
Encephalopathy.

Longs parents suspected that the universitys decision wasnt entirely about their
sons health and that the coaches no longer wanted him on the team.

They saw news reports that Syracuse offered a scholarship to a transfer player
from UCLA two days after Long was disqualified. To his parents, the timing was
no accident, though Syracuse said the events were unrelated.

Longs father and stepmother, Isla, talked to Tucker after he disqualified A.J., and
they came away thinking the decision was made with inadequate testing and
without consulting concussion experts. Syracuse would not allow Tucker, who is a
family medicine doctor, to be interviewed for this story.

Isla Long is an attorney in Philadelphia, and she researched the Syracuse

concussion policy. It says that any student-athlete with two documented
concussions resulting in missed practice or playing time will receive a letter from
the team physician warning that a third concussion may disqualify them from
contact sports at the school.

Basing disqualifications on the number of concussions is not the way to approach

this injury, said Michael Collins, the director of the University of Pittsburgh
Medical Center Sports Medicine Concussion Program. He said the policy is
well-intentioned, but can lead athletes to hide concussions.

DOCUMENTS: Read the concussion-related policies of the 65 schools in the NCAA

Power Five football conferences.

Cohen, the Arizona head athletic trainer, said the severity of symptoms and how
quickly a player recovered are more important factors than the number of
concussions in determining whether it is safe to keep playing. He said he has
disqualified a player after a single concussion but allowed another to keep playing
after racking up 10.

A Syracuse spokeswoman, Susan Edson, said there was no hard rule on

disqualifying athletes after three concussions. Every case is evaluated on an
individual basis, she said, adding that the school would not comment on the case
of any disqualified athlete, including Long.

9
Long was the fourth Syracuse football player disqualified after suffering
concussions in an 18-month period, and athletes and coaches told STAT the
concussion limit is pretty firm. My understanding is three is the magic number,
said Syracuse womens ice hockey coach Paul Flanagan. The reality is schools
have to be careful, and God forbid you allow someone to play and something
happens.

Longs parents wanted someone else to examine A.J., to learn for certain whether
his brain was healthy. They arranged for a detailed evaluation at the Jefferson
Comprehensive Concussion Center in Philadelphia.

Ace and Isla Long asked their son in late October if he wanted to play football
again. Now symptom-free, he said he did, as long as the doctors in Philadelphia
said it was safe.

I am not scared of another concussion, Long said in November. I am not scared

of being hit in my head again.

Long was not prepared for what happened after he posted his intention to play
again on Twitter. Just a day later, he found a message on his Facebook page from
a coach at Fairmont State University in West Virginia saying Long would be a
great fit for the teams offense. Other schools soon followed with their own
pitches, including Monmouth University, Wagner College, and the University of
Tennessee-Martin. Long said hes also talking to coaches at Rutgers, Ohio, and
Towson universities about joining their teams.

But the publics reaction to his announcement was harsh. Syracuse head coach
Scott Shafer told reporters the news was concerning, while fans were even
more unsparing on comment boards and social media: Best wishes to A.J. and
sincere hope that he still has brain cells communicating among themselves when
hes 50, wrote one commenter. Another raised the prospect of his suicide in 20
years due to CTE.

The comments infuriated A.J., but didnt deter his drive to find a new place to
play. In mid-November, Long and his father went for an unofficial visit to
Monmouth University in New Jersey. He met with the coaches, who he said were
ready to offer him a scholarship as soon as the results of the Philadelphia clinics
testing were available. Monmouth was now his top choice. It was only 90 minutes
from his hometown.

10
Long ramped up the intensity of his workouts, and most days he would post a
video of himself on Instagram lifting weights or throwing passes. After working
out, the route back to his apartment took Long past the Syracuse practice fields.
He no longer used the equipment at the football facility or ate at the team
cafeteria. He was on his own.

One night, he stood on a small incline and silently watched his former teammates
prepare for their next game under the lights. He confessed to his dad that the
scene upset him. What would he do, he wondered, if the Philadelphia doctors
didnt clear him to play?

Am I only seen as a football player? he thought. Is that all I am good for?

Matthew Orr/STAT A.J. Long works out in Manley Field House at Syracuse University in
November 2015.

Long couldnt sleep in the days leading up to his meeting with the concussion
specialists who would decide his future. All I could think about was this visit, he
said.

On the Monday after Thanksgiving, he arrived at the Jefferson concussion center

11
in Philadelphia a few minutes before 9 a.m. Wearing a red hoodie, baseball hat,
and sweatpants, he moved slowly. He said he was tired.

But when he emerged from the appointment 90 minutes later, Long was jubilant.
He said a neurologist told him he was healthy and able to play football again. He
posted the news on Instagram.

God is Amazing, he wrote. Now its time to finalize where my new home will
be!!!

The doctor may have found no problems, but the concussion center was not ready
to clear Long. He would have to return several more times through December.
One day, therapists tried to induce concussion symptoms by putting Long through
an intense workout. He went back another day for a special magnetic resonance
imaging scan for concussion victims.

Meanwhile, Long packed up his apartment at Syracuse and loaded his belongings
into a rental van his father drove up from Pennsylvania.

Two days before Christmas, Long was back at the Jefferson concussion center. He
met with Dr. Robert Franks, a concussion specialist who is a team physician with
USA Wrestling, to review his test results. Long walked out clutching a note
clearing him for full activity and full contact practice.

The clean bill of health came too late for Monmouth University, however. A coach
called him only days before to say the school doctors were unable to clear him to
play based on the information they had. T.J. DiMuzio, the Monmouth coach in
charge of Longs recruitment, said the school had been close to offering him a
scholarship. It was a strong consideration for us, he said.

Long said he was disappointed but is now focused on finding another school. He
hopes to hear something in the coming weeks.

I have had plenty of people come talk to me about it, he said, and they are like,
Listen, we dont think it is smart for you to play football anymore. At the same
time, those people dont have to live with what I live with.

They dont have to watch football on Saturdays knowing that you can do the job
of people out there just as well if not better than they are doing it. They dont
have to come and sit in class with old teammates and listen to them talk about the
game. You dont have to walk by practice and have that feeling of [being] left out
and aloneness and have this pit in your stomach that you just feel empty, Long

12
said. They dont have to deal with that.

High Impact

An occasional series on the science of concussions and how new findings

are reverberating through sports and society.

Concussion, Inc.: The big business of treating brain injuries

Everything we know and dont know about concussions

NFL union urges players to see Concussion, but warns it is scary

How the NFLs concussion-spotting system is and isnt working

New study will examine NFL players brains in bid to spot CTE

My muddled brain: A fall, a concussion, and weeks of confusion

A pill for concussions remains a brain-busting challenge

After concussions, young football players plea: Donate my brain to science

Disqualified after concussions, college football players recruited back onto the
field

Can chocolate milk speed concussion recovery? Experts cringe

Experts debate: How many concussions are too many for an athlete?

13
6 December, 2016 | Proudly Brought to you by STAT

Is Adam Feuerstein the most feared man

in biotech?
CAMBRIDGE, Mass. When he tweets, stocks tumble. And biotech executives
quake.

Often angry, always skeptical, Adam Feuerstein may be the most feared journalist
covering the biotech industry. He digs deep into the science to take down
companies that he believes overhype their drugs, distort their data, or make
ridiculously grandiose promises.

And then he takes to Twitter to have a little fun. Feuerstein has called biotech
CEOs dumbass, douche canoe, and stem-cell smoothie peddler. He has
referred to financial analysts as moron and dipshit. In his telling, several
companies making bold claims were peddling nothing more than diluted bleach
water. A top public relations exec was a human oil slick. Another PR firm?
Idiots. And those are just the insults we can print.

I have an itchy trigger finger on hypocrisy, Feuerstein told STAT over beer at
Lord Hobo, his favorite bar here, a stones throw from the biotech hub of Kendall
Square.

His stories make waves: Galena Biopharma fired its CEO after Feuerstein
reported that the company had paid outside firms to promote its stock while
insiders made millions selling it. At the now-defunct BioPure, an executive landed
in jail after Feuerstein reported on safety concerns about the companys blood
substitute. And long before most people had heard of Martin Shkreli, Feuerstein
reported that Shkrelis employees at the biotech firm Retrophin were controlling
anonymous Twitter accounts promoting the companys stock.

There are dozens of examples of a stock dropping, or jumping, in apparent

response to Feuersteins articles and tweets over the years, according to a STAT
review of the archives of StreetAccount, a service that alerts investors about the
latest financial market news.

I have an itchy trigger finger on hypocrisy.

1
Adam Feuerstein

A longtime senior columnist for the financial website TheStreet, Feuerstein

(pronounced FOY-er-steen) does occasionally get things wrong, particularly when
he tries to predict whether a drug will get approved. One company even put out a
string of press releases attacking his reporting as nave and ill-informed.

But investors read him. So does the rest of the biotech world.

Everyone is keeping an eye on what he covers all of them, said Dan Budwick,
a media strategist at Pure Communications who works with biotech companies.

Indeed, for a guy who writes dense, insidery articles that often require a whole lot
of Googling to unpack, Feuerstein has a huge following: He has 50,000 Twitter
followers and on a good month can get close to a million page views for his
articles, an eye-popping total for a journalist writing about a niche subject in a
trade publication.

An acute bull meter

His clout inspires fear.

Budwick recalls Feuersteins name coming up at a long-ago meeting at Amicus

Therapeutics. The investor relations team looked at the management team dead
in the face and said: Youre not talking to him, Budwick recalled. (The Amicus
CEO ignored the warning and has talked to Feuerstein periodically over the
years.)

STAT requested interviews with more than three dozen current or former
biopharma CEOs whose publicly traded companies Feuerstein has covered. Some
of their PR managers burst into laughter at the very idea that theyd allow an
executive to go on the record about a journalist who takes such delight in
skewering both companies and individuals.

Youre taking on an 800-pound gorilla, one said.

2
Only four CEOs three of whom periodically drink beer with Feuerstein at Lord
Hobo agreed to talk about him on the record.

He has an acute bullshit meter, said Nick Leschly, CEO of Bluebird Bio. If he
thinks youre bullshitting him, or he thinks youre holding back, or youre not
being balanced, hes going to eat you alive. (Leschly, whose company has been
the target of a couple of mild Feuerstein barbs its recent clinical trial results
were cast as worrisome made a point of adding that he respects Feuersteins
reporting.)

Ron Renaud, the former CEO of Idenix, said Feuerstein aggravated him with a
string of skeptical stories about the companys business model. But he
acknowledged they were fair, saying, If I was on the outside looking in, I might
have the same opinion.

If Feuerstein thinks youre spinning him, hes going to eat you alive.

Nick Leschly, CEO of Bluebird Bio

His critics complain that Feuerstein attacks companies without first listening to
what they have to say. (He does call if he has specific questions, but its a point of
pride with him to avoid the meet-and-greet sessions that involve endless
PowerPoint presentations in corporate conference rooms. I dont really do
bullshit, he explained. If youre just going to try to blow smoke up my ass, Im
not interested in hearing what you have to say.)

Critics also whisper, without evidence, that he must be trying to drive down
stocks for personal gain.

And, pointing to the voluminous record on social media, they call him mean.

He doesnt hesitate, for instance, to embarrass the hapless PR reps who send him
embargoed copies of corporate news without first asking if hell agree to the
embargo. Unless hes feeling charitable, he reports the information right away, as
hes entitled to do, spoiling a companys carefully choreographed announcement.

Sometimes I want to be an asshole, he explained. Sometimes you just want to

teach them a lesson.

3
He also publishes an annual feature on the years worst biopharma CEO he
nominates a list of candidates and then names a winner based on readers votes.

There was a bumper crop of Worst CEO candidates this year. It was
difficult to winnow the list to five nominees. So many deserving.

Adam Feuerstein (@adamfeuerstein) December 16, 2015

Feuersteins coverage counterbalances the at-times delusional optimism

pervasive in the biotech sector, said Baird financial analyst Brian Skorney.

None of that wins him many friends. Feuerstein doesnt care. (He says hes not
taking potshots, and only calls out people when they deserve it.)

His work is so closely watched that even his jokes can move the market. Last
month, in response to a particularly unlikely rumor about the pharma giant
Allergans shopping list, he sarcastically sent out a tweet announcing that
Allergan was buying MannKind, a biotech company thats been on the brink of
bankruptcy in recent months. He sourced it according to Bo.

In the next 30 minutes, MannKinds stock price rose nearly 3 percent to a daily
peak, likely driven by trades prompted by algorithms scanning Twitter for market
news.

People who actually know Feuerstein knew he was kidding. Bo is his puppy.

4
Aram Boghosian for STAT Feuerstein poses for a portrait with his puppy Bo at his home near
Boston.

This isnt summer camp

Feuerstein, 48, grew up on Long Island, N.Y., the son of a homemaker and a
businessman who manufactured plastics and sold cars. A political science major
at Emory University, he got his start in professional journalism while still in
college, doing a six-month internship at an Atlanta business publication. He kept
showing up for work for weeks after the internship ended, until he got hired.

He moved to San Francisco as the dotcom bubble was building in the mid-1990s
and began to report on technology. Feuerstein wrote a story about Google the
week it launched, quizzing Larry Page on how he was going to make money off a
white webpage with a search bar. (He still has Pages original business card,
which includes a fax number but no cell.)

In 2001, Feuerstein landed at TheStreet. The investor-focused website, just five

years old at the time, had a reputation for interpreting and predicting the news in
a conversational tone.

5
It was literally the edgiest place to be, said Herb Greenberg, an alum of
TheStreet who now runs a financial research firm.

Feuerstein had never covered biotech but when an editor asked him if he could do
it, he said yes.

Other than a two-year stint as a biotech stock analyst in the mid-2000s,

Feuersteins been doing it ever since. Hes been at TheStreet longer than any
other writer except founder Jim Cramer, the former hedge fund manager and host
of CNBCs Mad Money.

He represents the precise ethos that we started the company with hes
fearless, hes persistent, hes not cowed, and he works harder than anyone else,
Cramer said in an email.

Sometimes you just want to teach them a lesson.

Adam Feuerstein

Feuersteins boss doesnt object to the over-the-top insults his columnist flings
around social media. This isnt summer camp. It can be a rough business, said
Jeffrey Kanige, editor-in-chief of TheStreet. He called Feuersteins work
scrupulously fair.

For all his acerbic anger online, Feuerstein comes across as warm in person. He
can be surprisingly bullish on the biotech industry, earnest even about the
tremendous overall progress he believes science has made in the past decade.

And hes not afraid to show his soft side now and again.

He tenderly chronicled on Twitter his dog Maxs months-long battle with cancer:

6
frolicking on the beach in defiance of the diagnosis. Surgery and rounds of
chemotherapy. Good news from the vet. Learning Maxs cancer had returned.
Heartbreak the day Max died. And finally, a silver lining a few months later, when
the family brought Bo home from a shelter.

Feuerstein also tries to keep sight of the human stories behind the news he
covers. Last month, he wrote a live blog (which set a new traffic record for
TheStreet) chronicling an emotional meeting of an FDA advisory panel that
recommended against approval of Sareptas experimental drug for Duchenne
muscular dystrophy. On Twitter, he expressed sympathy for the young patients
and their families.

There are kids with DMD and their families feeling a lot of
disappointment and pain right now. $SRPT.

Adam Feuerstein (@adamfeuerstein) April 25, 2016

Dinging the Arctic ice-cube salesman

Feuerstein doesnt get aggravated by the same things that outrage politicians and
the public. He found the uproar over Shkrelis decision to raise the price of an old
drug for AIDS patients by 5,000 percent to be tiresome. (As Feuerstein tells it,
Shkreli might have been the rudest, but he was far from the worst offender when
it came to price hikes.) Hes called Gilead Sciences, another popular target for
politicians, the best biotech company on the planet because it developed truly
innovative, albeit pricey, drugs to cure hepatitis C.

Feuersteins targets are often lower-profile: Small and medium-sized drug

companies working on science of dubious merit. CEOs, many unknown outside
their local business communities, who cut corners. Analysts who pump up a stock
that doesnt deserve it.

(He doesnt spare his fellow scribes, either including STAT, which hes charged
with trotting out stale retreads of stuff I know already.)

His stories arent meant for a novice: Theyre packed with references to corporate
history that, in many cases, only a companys longtime investors and observers
can easily interpret. But he generally steers clear of jargon.

And, as on Twitter, in his articles he calls it like he sees it.

When MannKind appointed its now-deceased founder Alfred Mann as interim CEO

7
last fall at the age of 90, Feuerstein called it elder abuse. He excoriated
Christoph Westphal, who founded a company developing a treatment for leg
cramps made of extracts of ginger, cinnamon, and a derivative of pepper, as the
industrys Arctic ice-cube salesman.

And he isnt shy about stating without evidence that companies are
intentionally spinning data or hyping anecdotes to goose their stock.

Asked if it was possible some of those misleading corporate claims could be just
an honest mistake, Feuerstein said, Its also possible that a pink unicorn will
knock on my door tomorrow and offer to make me pancakes. Possible. Just really
unlikely.

Generex Biotechnology, a Canadian company whose stock now trades for a penny,
once unsuccessfully sued Feuerstein and TheStreet for $250 million for writing
that the company plays stupid games aimed at misleading investors, among
other things. (Generex dropped the suit without any exchange of money before it
reached a trial.)

Northwest Biotherapeutics, a Maryland company that Feuerstein jokingly calls

one of my nemeses, put out six press releases in as many months in 2014
attacking Feuersteins dogged coverage. (One charged that his skeptical
questions in one instance were baseless and reflect a lack of understanding of
clinical trial design.)

Feuerstein has also been harangued and threatened by investors who dont like
his reporting.

Three most common smears used by foes to ignore what I write (usually
to their detriment):

Blogger!
Basher!!
Baldy!!!

Adam Feuerstein (@adamfeuerstein) November 11, 2015

Some of Feuersteins critics are convinced that no one could be so persistent

about digging up dirt without having an ulterior motive. They circulate a
conspiracy theory that hes betting against the stocks he covers, or that hes
being paid by those who do. The unsupported accusation even made it into a
column in the Washington Post until it was corrected and toned down after

8
TheStreets lawyers got involved.

Feuerstein says hes just doing his job. TheStreets ethics policy bars editorial
employees from owning individual stocks other than TheStreet. Feuerstein says
he and his family have no financial holdings other than options in the TheStreets
(sinking) stock and a 401(k).

Aram Boghosian for STAT Feuerstein drinks a beer at Lord Hobo in Cambridge, where many of
his interviews take place.

A hunt for red flags

People who know Feuerstein say hes whip-smart, able to critique study data with
a sophistication unmatched by many specialists.

I think hes got far more insight into clinical trial design than the vast majority of
my colleagues, said University of Chicago oncologist Dr. Mark Ratain, who once
coauthored a journal editorial with Feuerstein.

Feuerstein says any investor can master the basics of what he does.

He recently wrote a column dishing out tips to his readers: Compare a companys

9
description of a trial with what its actually doing, as submitted to the federal
database ClinicalTrials.gov. Watch out for red flags cloaked in jargon, like per
protocol (a type of analysis that doesnt reflect real-world results well) and
grade five toxicity (code for a patient death). Be encouraged by phrases like
statistical significance and achieved the primary endpoint.

I think hes got far more insight into clinical trial design than the vast majority of
my colleagues.

Dr. Mark Ratain, oncologist

Using those skills to call out hype is Feuersteins bread and butter.

Take IsoRay Medical, a small biotech company out in Washington state that
makes a type of radiation therapy.

Last year, Cornell researchers published a retrospective study on 272 early-stage

lung cancer patients, some of whom had received IsoRays treatment.

IsoRay put out a press release trumpeting the outstanding results: 96 percent of
patients who got the companys cancer treatment no longer had growing tumors
in their lungs, and a full 100 percent of them were still alive five years after
treatment. Investors were jubilant; by days end, the companys stock price had
doubled.

Feuerstein smelled red meat.

100 percent when you see something like that, youre like, Really? Its like
someone claiming a cure, Feuerstein said. The bullshit detector goes off.

So Feuerstein read the journal article and compared it to IsoRays press release.
There were discrepancies.

10
In a scathing column, Feuerstein accused IsoRay of being lazy with the facts,
playing rope-a-dope with the data, and continuing a trend of using clever,
selective editing in its communications to boost its sagging stock price. (He had
been on the company about its boosterish PR even before the Cornell study
appeared.)

. @Bullltalk $ISR: We will issue many PRs about marketing plans

masquerading as clinical studies in desperate attempt to boost sales.

Adam Feuerstein (@adamfeuerstein) August 5, 2014

Feuerstein walked his readers through the biggest problems:

The press release didnt mention that the study found no statistically significant
advantage to using IsoRays seeds in combination with surgery to control tumor
growth.

It also neglected to mention that a significant number of patients could not be

reached for follow-up questions in the years after the procedure. That would have
cast doubt on the clinical relevance of the claim of a 100 percent survival five
years out.

Feuersteins reporting infuriated investors, drove down the stock price and
sparked more than a dozen class action lawsuits, many of which are still pending,
on behalf of investors who had purchased the companys stock in response to the
bullish press release. IsoRay denied the allegations and both its former and
current CEO declined to talk to STAT.

Feuerstein calls the incident a classic of the genre and really, it was classic
Feuerstein, too. He summed up his appraisal of the company by tweeting out one
of his favorite GIFs: SpongeBob SquarePants creating a rainbow by waving his
hands. The caption: bullshit.

The loneliest man at J.P. Morgan

Feuerstein is at his desk just after 5 a.m. most mornings, working from a spare
bedroom in his home near Boston, where he lives with his partner and their two
teenagers.

You have to look carefully in his office to find signs of his ferocious persona. But
theyre there. On the desktop of his computer, Feuerstein keeps a folder of
several dozen of his favorite GIFs, many with profane captions, for posting on

11
Twitter. In one, which he favors to illustrate the financial future he envisions for
MannKind investors, people run mindlessly into a gaping crater.

Prints and artwork evoking his beloved San Francisco line the wall above his
desk. (His distinctive Twitter avatar a stern-looking mustachioed figurine that
he snapped a photo of in a museum is an ode to his former city, too; it caught
his fancy because it was called a San Francisco dandy.)

Most years, Feuerstein returns to San Francisco in January for the biotech
industrys equivalent of the Super Bowl: The J.P. Morgan Healthcare Conference,
which draws thousands of suited investors, executives, and journalists for a week
packed with meetings and deal-making.

The classic J.P. Morgan thing for a reporter is here Feuerstein put on his best
haughty voice My calendar is filled from 6 a.m. til 10! Ive got meetings with
companies every 15 minutes!

Not Feuerstein. I have no meetings, he said. Nobody calls me.

12
6 December, 2016 | Proudly Brought to you by STAT

This city saw 26 opioid overdoses in less

than four hours
Photos by Andrew Spear

HUNTINGTON, W.Va. Officer Sean Brinegar arrived at the house first

People are coming here and dying, the 911 caller had said and found a man
and a woman panicking. Two people were dead inside, they told him.

Brinegar, 25, has been on the force in this Appalachian city for less than three
years, but as heroin use has surged, he has seen more than his fair share of
overdoses. So last Monday, he grabbed a double pack of naloxone from his gear
bag and headed inside.

A man was on the dining room floor, his thin body bluish-purple and skin
abscesses betraying a history of drug use. He was dead, Brinegar thought, so the
officer turned his attention to the woman on a bed. He could see her chest rising
but didnt get a response when he dug his knuckle into her sternum.

Brinegar gave the woman a dose of injected naloxone, the antidote that can
jumpstart the breathing of someone who has overdosed on opioids, and returned
to the man. The man sat up in response to Brinegars knuckle in his sternum he
was alive after all but started to pass out again. Brinegar gave him the second
dose of naloxone.

Maybe on an average day, when this Ohio River city of about 50,000 people sees
two or three overdoses, that would have been it. But on this day, the calls kept
coming.

Two more heroin overdoses at that house, three people found in surrounding
yards. Three overdoses at the nearby public housing complex, another two up the
hill from the complex.

1
From about 3:30 p.m. to 7 p.m., 26 people overdosed in Huntington, half of them
in and around the Marcum Terrace apartment complex. The barrage occupied all
the ambulances in the city and more than a shifts worth of police officers.

By the end of it, though, all 26 people were alive. Authorities attributed that
success to the cooperation among local agencies and the sad reality that they are
well-practiced at responding to overdoses. Many officials did not seem surprised
by the concentrated spike.

It was kind of like any other day, just more of it, said Dr. Clay Young, an
emergency medicine doctor at Cabell Huntington Hospital.

But tragic news was coming. Around 8 p.m., paramedics responded to a report of
cardiac arrest. The man later died at the hospital, and only then were officials told
he had overdosed. On Wednesday, authorities found a person dead of an overdose
elsewhere in Cabell County and think the death could have happened Monday.
They are investigating whether those overdoses are tied to the others, potentially
making them Nos. 27 and 28.

Its possible that the rash of overdoses was caused by a particularly powerful
batch of heroin or that a dearth of the drug in the days beforehand weakened
peoples tolerance.

But police suspect the heroin here was mixed with fentanyl, a synthetic opioid
that is many times more potent than heroin. A wave of fatal overdoses signaled
fentanyls arrival in Huntington in early 2015, and now some stashes arent heroin
laced with fentanyl, but fentanyl laced with heroin, said Police Chief Joe
Ciccarelli.

Another possibility is carfentanil, another synthetic opioid, this one used to sedate
elephants. Police didnt recover drugs from any of the overdoses, but toxicology
tests from the deaths could provide answers.

2
A home in the area where 13 people overdosed last Monday.

A battle-scarred city

In some ways, what happened in Huntington was as unremarkable as the spurts

in overdoses that have occurred in other cities. This year, fentanyl or carfentanil
killed a dozen people in Sacramento, nine people in Florida, and 23 people in
about a month in Akron, Ohio. The list of cities goes on: New Haven, Conn.;
Columbus, Ohio; Barre, Vt.

But what happened in Huntington stands out in other ways. It underlines the
potential of a mysterious substance to unleash wide-scale trauma and overwhelm
a citys emergency response. And it suggests that a community that is doing all
the right things to combat a worsening scourge can still get knocked back by it.

From a policy perspective, were throwing everything we know at the problem,

said Dr. James Becker, the vice dean for governmental affairs and health care
policy at the medical school at Marshall University here. And yet the problem is
one of those that takes a long time to change, and probably isnt going to change
for quite a while.

3
Surrounded by rolling hills packed with lush trees, Huntington is one of the many
fronts in the fight against an opioid epidemic that is killing almost 30,000
Americans a year. But this city, state, and region are among the most
battle-scarred.

West Virginia has the highest rate of fatal drug overdoses of any state and the
highest rate of babies born dependent on opioids among the 28 states that report
data. But even compared with other communities in West Virginia, Huntington
sees above-average rates of heroin use, overdose deaths, and drug-dependent
newborns. Local officials estimate up to 10 percent of residents use opioids
improperly.

The heroin problem emerged about five years ago when authorities around the
country cracked down on pill mills that sent pain medications into communities;
officials here specifically point to a 2011 Florida law that arrested the flow of pills
into the Huntington area.

As the pills became harder to obtain and harder to abuse, people turned to heroin.
It has devoured many communities in Appalachia and beyond.

In Huntington, law enforcement initially took the lead, with police arresting
hundreds of people. They seized thousands of grams of heroin. But it wasnt
making a dent. So in November 2014, local leaders established an office of drug
control policy.

As far as numbers of arrests and seizures, we were ahead of the game, but our
problem was getting worse, said Jim Johnson, director of the office and a former
Huntington police officer. It became very obvious that if we did not work on the
demand side just as hard as the supply side, we were never going to see any
success.

The office brought together law enforcement, health officials, community and
faith leaders, and experts from Marshall to try to tackle the problem together.

Changes in state law have opened naloxone dissemination to the public and
protected people who report overdoses. But the city and its partners have gone
further, rolling out programs through the municipal court system to encourage
people to seek treatment. One program is designed to help women who work as
prostitutes to feed their addiction. Huntington has eight of the states 28
medically assisted detox beds, and theyre always full.

4
Also, in 2014, a center called Lilys Place opened in Huntington to wean babies
from drugs. Last year, the local health department launched this conservative
states first syringe exchange. The county, health officials know, is at risk for
outbreaks of HIV and hepatitis C because of shared needles, so they are trying to
get ahead of crises seen in other communities afflicted by addiction.

Huntington just happens to have taken ownership of the problem, and very
courageously started some programs that have been models for the rest of the
state, said Kenneth Burner, the West Virginia coordinator for the Appalachia
High Intensity Drug Trafficking Areas program.

A revolving door

While paramedics in the area have carried naloxone for years, it was this spring
that Huntington police officers were equipped with it. Just a few officers have
administered it, but Monday was Brinegars third time reviving overdose victims
with naloxone.

Paramedics, who first try reviving victims by pumping air with a bag through a
mask, had to administer another 10 doses of naloxone Monday. Three doses went
to one person, said Gordon Merry, the director of Cabell County Emergency
Services. During the response, ambulances from stations outside Huntington
were called into the city to assist the eight or so response teams already
deployed.

Merry was clearly proud of the response, but also frustrated. He was tired, he
said, of people whom emergency crews revived going back to drugs. Because of
the power of their disease, saving their lives didnt get at the root of their
addiction.

5
Its a revolving door. Were not solving the problem past reviving them, he said.
We gave 26 people another chance on life, and hopefully one of those 26 will
seek help.

In the part of town where half the overdoses happened, some homes are
well-kept, with gardens, bird feeders, and American flags billowing. Home Sweet
Home, read an engraved piece of wood above one front door; in another front
yard, a wooden sculpture presented a bear holding a fish with WELCOME
written across its body.

But many structures are decrepit and have their windows blacked out with
cardboard and sheets. At one boarded-up house, the metal slats that once made
up an overhang for the front porch split apart and warped as they collapsed, like
gnarled teeth. On the plywood that covered a window frame was a message
spelled out in green dots: GIRL SCOUTS RULE.

In and around the public housing complex, which is made up of squat two-story
brick buildings sloping up a hill, people either said they did not know what had
happened Monday, or that lowlifes in another part of the complex sparked the
problem. Even as paramedics were responding to the overdoses, police started
raiding residences as part of their investigation, including apartments at the
complex, the chief said.

Just up the hill, a man named Bill was sitting on a recliner on his front porch with
his cat. He said he saw the police out in the area Monday, but doesnt pay much
attention to overdoses anymore. They are so frequent.

Bill, who is retired, asked to be identified only by his first name because he said
he has a son in law enforcement. He has lived in that house for five decades and
started locking his door only in recent years. His neighbors house had been
broken into, and he had seen people using drugs in cars across the street from his
house. He called the police sometimes, he said, but the users were always gone by
the time the police arrived.

I hate to say this, but you know, Id let them die, Bill said. If they knew that no
one was going to revive them, maybe they wouldnt overdose.

Even here, where addiction had touched so many lives, its not an uncommon
sentiment. Addiction is still viewed by some as a bad personal choice made by bad
people.

6
Some folks in the community just didnt care that 26 of their fellow residents
almost died, said Matt Boggs, the executive director of Recovery Point.

Recovery Point is a long-term recovery program that teaches clients to live a life
without drugs or alcohol. Boggs himself is a graduate of the program, funded by
the state and donations and grants.

The clients live in bunk rooms at the facility for an average of more than seven
months before graduating. The program says that about two-thirds of graduates
stay sober in the first year after graduation, and about 85 percent of those people
are sober after two years.

Local officials praise Recovery Point, but like many other recovery programs, it is
limited in what it can do. It has 100 beds for men at its location in Huntington,
and is expanding at other sites in the state, but Boggs said theres a waiting list of
a couple hundred people.

Mike Thomas, 30, graduated from the main part of the program a month ago and
is working as a peer mentor there as he transitions out of the facility. Thomas has
been clean since Oct. 15, 2015, but has dreams about getting high or catches
himself thinking he could spare $100 from his bank account for drugs.

Thomas hopes to find a full-time job helping addicts. His own recovery will be a
lifelong process, one that can be torn apart by a single bad decision, he said. He
will always be in recovery, never recovered.

Im not cured, he said.

7
Mike Thomas, 30, is a recent graduate of the Recovery Point program and is now working as a
peer mentor there.

A killer that doesnt discriminate

As heroin has bled into communities across the country, it has spread beyond the
regular drug hotbeds in cities. On a 2004 map of drug use in Huntington back
then, mostly crack cocaine a few blocks of the city glow red. Almost the entire
city glows in yellows and reds on the 2014 map.

In 2015, there were more than 700 drug overdose calls in Huntington, ranging
from kids in their early teens to seniors in their late 70s. In 2014, it was 272 calls;
in 2012, 146. One bright spot: fatal overdoses, which stood at 58 in 2015, have
ticked down so far this year.

8
I used to be able to say, We need to focus here, said Scott Lemley, a criminal
intelligence analyst at the police department. I cant do that anymore.

Heroin hasnt just dismantled geographic barriers. It has infiltrated every

demographic.

It doesnt discriminate. Prominent businessmen, their child. Police officers, their

child. Doctors, their child, Merry said. The businessman and police officer do
not have their child anymore.

The businessman is Teddy Johnson. His son, Adam, died in 2007 when he was 22,
one of a dozen people who died in a five-month period because of an influx of
black-tar heroin. The drug hadnt made its full resurgence into the region yet, but
now, Johnson sees the drug that killed his son everywhere.

9
Teddy Johnson lost his son, Adam, in 2007 to a heroin overdose. He has several tattoos
dedicated to Adams memory.

He runs a plumbing, heating, and kitchen fixture and remodeling business. From
his storefront, he has witnessed deals across the street.

Adam, who was a student at Marshall, was a musician and artist who hosted radio
shows. He was the life of any party, his dad said.

Johnson was describing Adam as he sat at the marble countertop of a model

kitchen in his business last week. With the photos of his kids on the counter, it felt
like a familys home. Johnson explained how he still kept Adams bed made, how
he kept his sons room the same, and then he began to cry.

The biggest star in the sky we say is Adams star, he said. When were in the
car and it cant be this way but it always seems to be in front of us, guiding
us.

Adams grave is at the top of a hill near the memorial to the 75 people Marshall
football players, staff, and fans who died in a 1970 plane crash. Its a beautiful
spot that Johnson visits a few times each week, bringing flowers and cutting the

10
grass around his sons grave himself. Recently a note was left there from a couple
Johnson knows who just lost their son to an overdose; they were asking Adam to
look out for their son in heaven.

But even here, at what should be a respite, Johnson cant escape what took his
son. He said he has seen deals happen in the cemetery, and he recently found a
burnt spoon not more than 20 feet from his sons grave.

Johnson keeps fresh flowers on his sons grave and cuts the grass around the grave himself.

Ive just seen too much of it, he said.

If Huntington doesnt have a handle on heroin, at least the initiatives are helping
officials understand the scale of the problem. More than 1,700 people have come
through the syringe exchange since it opened, where they receive a medical
assessment and learn about recovery options. The exchange is open one day a
week, and in less than a year, it has distributed 150,000 clean syringes and
received 125,000 used syringes.

But to grow and sustain its programs, Huntington needs money, officials say. The

11
community has received federal grants, and state officials know they have a
problem. But economic losses and the collapse of the coal industry that fueled the
drug epidemic have also depleted state coffers.

We have programs ready to launch, and we have no resources to launch them

with, said Dr. Michael Kilkenny, the physician director of the Cabell-Huntington
Health Department. Were launching them without resources, because our
people are dying, and we cant tolerate that.

In some ways, Huntington is fortunate. It has a university with medical and

pharmacy schools enlisted to help, and a mayors office and police department
collaborating with public health officials. But what does that herald then for other
communities?

If I feel anxious about what happens in Huntington and in Cabell County, I

cannot imagine what it must be like to live in one of these other at-risk counties in
the United States, where they dont have all those resources, they dont have
people thinking about it, said Dr. Kevin Yingling, the dean of the Marshall
University School of Pharmacy.

Yingling, Kilkenny, and others were gathered on Friday afternoon to talk about
the situation in Huntington, including the rash of overdoses. But by then, there
was already a different incident to discuss.

A car had crashed into a tree earlier that afternoon in Huntington. A man in the
driver seat and a woman in the passenger seat had both overdosed and needed
naloxone to be revived. A preschool-age girl was in the back seat.

12
6 December, 2016 | Proudly Brought to you by STAT

At a hospice facility for kids, a long

goodbye is made less lonely
He was two generations removed from the boy in the bed, a weary young
grandchild who had not fully awakened in days, and who in truth would not wake
again.

He would linger, silently, anywhere but the bedside his oversize, calloused
hands stuffed in the front pockets of his jeans. Then, unmoored, he would drift
away, down the hall, outside, anywhere else.

This all took place in Phoenix at a place called Ryan House, which is one of two
freestanding inpatient pediatric hospice and respite facilities in the United States.
The country might not need many facilities like this, but palliative care specialists
say the country needs a lot more than two.

Anyway. The man.

He was the patriarch of this huge family that buzzed around the facility every day
the boy was there. The staff knew the grandfather as a man of few words, and
they also sensed how seriously he took his role as leader and protector. And now
here he stood, powerless to help anyone, not least the boy who was struggling to
die.

This happens with younger people, hospice workers say. A disease can ravage
their body, but their heart and other organs are often so strong that theyll
continue after most everything else has shut down, leaving survivors to an

1
agonizingly long and lonely goodbye.

This boy had had an aggressive form of cancer for months, and now he lay in what
had become his de facto bedroom, in a facility that was largely given over to his
enormous extended family because no one in the clan owned a home big enough
to hold them all.

Dr. Kevin Berger works at Ryan House. Hes been involved with pediatric
palliative care for 19 years now, and has been at Ryan House for six years. He
knew the look of someone who was lost.

Berger asked someone on staff about the grandfather, looking for some way to
reach him. The older man was a bit of a maestro at the barbecue grill, someone
told Berger. He was known far and wide for it. It was a start, Berger thought.

Berger believes Ryan House needs to comprehensively support families, and focus
on interventions that help achieve their goals.

As often as not, that means music, play, celebrations, sleepovers with friends in
the community room.

These are meaningful, mindful interventions, as opposed to the traditional

medical focus, Berger said. You can take a really sad time and make it into
something where the family will remember an incredible event before the childs
death, and thats the focus.

When the boy with the big family lay dying, the place was quieter, pensive.

It was a Saturday morning when Berger spotted the grandfather walking alone, as
usual. Berger caught up to him, used the only thing he had.

I heard youre good with a grill, he said.

The man said he wasnt bad.

Weve got two big ones out back, he told him, nodding in the direction of the two
dark hulks. Anyone can use them, he said.

It wasnt much of a conversation. The older man smiled quietly and walked on.
Berger returned to work.

2
Inside the home, the boy labored and the rest of the family passed the time not
knowing how to be.

Berger cant remember for sure when the grandfather reappeared, other than it
was afternoon. It would have taken him multiple trips to carry that much food to
the grills. Ribs, chops, chicken, pork, beef in amounts far beyond what the
family could possibly eat.

The older man lit the fire and the family sprung to action, prepping food, clearing
space, doing their jobs. The smell of barbecue filled the place, filled the boys
room, as did the sounds of a family mobilized.

When the meal was cooked the family delivered plates to every staff member and
thanked them for their support through it all. People lingered late into the
evening, chatting with staff, wrapping leftovers.

Berger left, the grandfather left. Only a small few staffers remained.

Those few were still there hours later when, in a darkened room with a moonlit
view of two smoldering barbecue grills, a young boy took his leave.

3
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