You are on page 1of 19

AIDS Transcripts

Sex, Drugs and HIV

"People do stupid things. That's what spreads HIV." This was a headline in a U.K. newspaper, The
Guardian, not that long ago. I'm curious, show of hands, who agrees with it? Well, one or two
brave souls.


This is actually a direct quote from an epidemiologist who's been in field of HIV for 15
years, worked on four continents, and you're looking at her.

And I am now going to argue that this is only half true. People do get HIV because they do stupid
things, but most of them are doing stupid things for perfectly rational reasons. Now, "rational" is
the dominant paradigm in public health, and if you put your public health nerd glasses on, you'll
see that if we give people the information that they need about what's good for them and what's
bad for them, if you give them the services that they can use to act on that information, and a little
bit of motivation,people will make rational decisions and live long and healthy lives. Wonderful.


That's slightly problematic for me because I work in HIV, and although I'm sure you all know that
HIV is about poverty and gender inequality, and if you were at TED '07 it's about coffee prices
... Actually, HIV's about sex and drugs, and if there are two things that make human beings a little
bit irrational,they are erections and addiction.

So, let's start with what's rational for an addict. Now, I remember speaking to an Indonesian friend
of mine, Frankie. We were having lunch and he was telling me about when he was in jail in Bali for
a drug injection. It was someone's birthday, and they had very kindly smuggled some heroin into
jail, and he was very generously sharing it out with all of his colleagues. And so everyone lined
up, all the smackheads in a row, and the guy whose birthday it was filled up the fit, and he went
down and started injecting people. So he injects the first guy, and then he's wiping the needle on
his shirt, and he injects the next guy. And Frankie says, "I'm number 22 in line, and I can see the
needle coming down towards me, and there is blood all over the place. It's getting blunter and
blunter. And a small part of my brain is thinking, 'That is so gross and really dangerous,' but most
of my brain is thinking, 'Please let there be some smack left by the time it gets to me. Please let
there be some left.'" And then, telling me this story, Frankie said, "You know ... God, drugs really
make you stupid."


And, you know, you can't fault him for accuracy. But, actually, Frankie, at that time, was a heroin
addict and he was in jail. So his choice was either to accept that dirty needle or not to get
high. And if there's one place you really want to get high, it's when you're in jail.
But I'm a scientist and I don't like to make data out of anecdotes, so let's look at some data. We
talked to 600 drug addicts in three cities in Indonesia, and we said, "Well, do you know how you
get HIV?""Oh yeah, by sharing needles." I mean, nearly 100 percent. Yeah, by sharing
needles. And, "Do you know where you can get a clean needle at a price you can afford to avoid
that?" "Oh yeah." Hundred percent. "We're smackheads; we know where to get clean
needles." "So are you carrying a needle?"We're actually interviewing people on the street, in the
places where they're hanging out and taking drugs. "Are you carrying clean needles?" One in four,
maximum. So no surprises then that the proportion that actually used clean needles every time
they injected in the last week is just about one in 10, and the other nine in 10 are sharing.


So you've got this massive mismatch; everyone knows that if they share they're going to get
HIV, but they're all sharing anyway. So what's that about? Is it like you get a better high if you
share or something? We asked that to a junkie and they're like, "Are you nuts?" You don't want to
share a needle anymore than you want to share a toothbrush even with someone you're sleeping
with. There's just kind of an ick factor there. "No, no. We share needles because we don't want to
go to jail." So, in Indonesia at this time, if you were carrying a needle and the cops rounded you
up, they could put you into jail. And that changes the equation slightly, doesn't it? Because your
choice now is either I use my own needle now, or I could share a needle now and get a disease
that's going to possibly kill me 10 years from now, or I could use my own needle now and go to jail
tomorrow. And while junkies think thatit's a really bad idea to expose themselves to HIV, they
think it's a much worse idea to spend the next year in jail where they'll probably end up in
Frankie's situation and expose themselves to HIV anyway.So, suddenly it becomes perfectly
rational to share needles.


Now, let's look at it from a policy maker's point of view. This is a really easy problem. For once,
your incentives are aligned. We've got what's rational for public health. You want people to use
clean needles -- and junkies want to use clean needles. So we could make this problem go
away simply by making clean needles universally available and taking away the fear of arrest. Now,
the first person to figure that out and do something about it on a national scale was that well-
known, bleeding heart liberal Margaret Thatcher. And she put in the world's first national needle
exchange program, and other countries followed suit: Australia, The Netherlands and few
others. And in all of those countries, you can see, not more than four percent of injectors ever
became infected with HIV.


Now, places that didn't do this -- New York City for example, Moscow, Jakarta -- we're talking, at
its peak, one in two injectors infected with this fatal disease. Now, Margaret Thatcher didn't do
thisbecause she has any great love for junkies. She did it because she ran a country that had a
national health service. So, if she didn't invest in effective prevention, she was going to have pick
up the costsof treatment later on, and obviously those are much higher. So she was making a
politically rational decision. Now, if I take out my public health nerd glasses here and look at these
data, it seems like a no-brainer, doesn't it? But in this country, where the government apparently
does not feel compelled to provide health care for citizens, (Laughter) we've taken a very different
approach. So what we've been doing in the United States is reviewing the data -- endlessly
reviewing the data. So, these are reviews of hundreds of studies by all the big muckety-mucks of
the scientific pantheon in the United States,and these are the studies that show needle programs
are effective -- quite a lot of them. Now, the ones that show that needle programs aren't effective
-- you think that's one of these annoying dynamic slides and I'm going to press my dongle and the
rest of it's going to come up, but no -- that's the whole slide.

There is nothing on the other side. So, completely irrational, you would think. Except that, wait a
minute, politicians are rational, too, and they're responding to what they think the voters want. So
what we see is that voters respond very well to things like this and not quite so well to things like

So it becomes quite rational to deny services to injectors. Now let's talk about sex. Are we any
more rational about sex? Well, I'm not even going to address the clearly irrational positions of
people like the Catholic Church, who think somehow that if you give out condoms, everyone's
going to run out and have sex. I don't know if Pope Benedict watches TEDTalks online, but if you
do, I've got news for you Benedict -- I carry condoms all the time and I never get laid. (Laughter)
(Applause) It's not that easy!Here, maybe you'll have better luck.


Okay, seriously, HIV is actually not that easy to transmit sexually. So, it depends on how much
virus there is in your blood and in your body fluids. And what we've got is a very, very high level of
virus right at the beginning when you're first infected, then you start making antibodies, and then
it bumps along at quite low levels for a long time -- 10 or 12 years -- you have spikes if you get
another sexually transmitted infection. But basically, nothing much is going on until you start to
get symptomatic AIDS,and by that stage, you're not looking great, you're not feeling great, you're
not having that much sex.


So the sexual transmission of HIV is essentially determined by how many partners you have in
these very short spaces of time when you have peak viremia. Now, this makes people
crazy because it means that you have to talk about some groups having more sexual partners in
shorter spaces of time than other groups, and that's considered stigmatizing. I've always been a bit
curious about thatbecause I think stigma is a bad thing, whereas lots of sex is quite a good
thing, but we'll leave that be.The truth is that 20 years of very good research have shown us
that there are groups that are more likely to turnover large numbers of partners in a short space
of time. And those groups are, globally,people who sell sex and their more regular partners. They
are gay men on the party scene who have, on average, three times more partners than straight
people on the party scene. And they are heterosexuals who come from countries that
have traditions of polygamy and relatively high levels of female autonomy, and almost all of those
countries are in east or southern Africa. And that is reflected in the epidemic that we have today.


You can see these horrifying figures from Africa. These are all countries in southern Africa where
between one in seven, and one in three of all adults, are infected with HIV. Now, in the rest of the
world, we've got basically nothing going on in the general population -- very, very low levels -- but
we have extraordinarily high levels of HIV in these other populations who are at highest risk: drug
injectors, sex workers and gay men. And you'll note, that's the local data from Los Angeles: 25
percent prevalence among gay men. Of course, you can't get HIV just by having unprotected
sex. You can only HIV by having unprotected sex with a positive person.


In most of the world, these few prevention failures notwithstanding, we are actually doing quite
well these days in commercial sex: condom use rates are between 80 and 100 percent in
commercial sex in most countries. And, again, it's because of an alignment of the
incentives. What's rational for public health is also rational for individual sex workers because it's
really bad for business to have another STI. No one wants it. And, actually, clients don't want to go
home with a drip either. So essentially, you're able to achieve quite high rates of condom use in
commercial sex.


But in "intimate" relations it's much more difficult because, with your wife or your boyfriend or
someone that you hope might turn into one of those things, we have this illusion of romance and
trust and intimacy, and nothing is quite so unromantic as the, "My condom or yours, darling?"
question. So in the face of that, you really need quite a strong incentive to use condoms.


This, for example, this gentleman is called Joseph. He's from Haiti and he has AIDS. And he's
probably not having a lot of sex right now, but he is a reminder in the population, of why you
might want to be using condoms. This is also in Haiti and is a reminder of why you might want to
be having sex, perhaps. Now, funnily enough, this is also Joseph after six months on antiretroviral
treatment. Not for nothing do we call it the Lazarus Effect. But it is changing the equation of
what's rational in sexual decision-making. So, what we've got -- some people say, "Oh, it doesn't
matter very much because, actually, treatment is effective prevention because it lowers your viral
load and therefore makes it more difficult to transmit HIV." So, if you look at the viremia thing
again, if you do start treatment when you're sick, well, what happens? Your viral load comes
down. But compared to what? What happens if you're not on treatment? Well, you die, so your
viral load goes to zero. And all of this green stuff here, including the spikes -- which are because
you couldn't get to the pharmacy, or you ran out of drugs, or you went on a three day party
binge and forgot to take your drugs, or because you've started to get resistance, or whatever -- all
of that is virus that wouldn't be out there, except for treatment.


Now, am I saying, "Oh, well, great prevention strategy. Let's just stop treating people." Of course
not, of course not. We need to expand antiretroviral treatment as much as we can. But what I am
doing is calling into question those people who say that more treatment is all the prevention we
need. That's simply not necessarily true, and I think we can learn a lot from the experience of gay
men in rich countries where treatment has been widely available for going on 15 years now. And
what we've seen is that, actually, condom use rates, which were very, very high -- the gay
community responded very rapidly to HIV, with extremely little help from public health nerds, I
would say -- that condom use rate has come down dramatically since treatment for two reasons
really: One is the assumption of, "Oh well, if he's infected, he's probably on meds, and his viral
load's going to be low, so I'm pretty safe."

And the other thing is that people are simply not as scared of HIV as they were of AIDS, and rightly
so.AIDS was a disfiguring disease that killed you, and HIV is an invisible virus that makes you take a
pill every day. And that's boring, but is it as boring as having to use a condom every time you have
sex, no matter how drunk you are, no matter how many poppers you've taken, whatever? If we
look at the data, we can see that the answer to that question is, mmm.


So these are data from Scotland. You see the peak in drug injectors before they started the
national needle exchange program. Then it came way down. And both in heterosexuals -- mostly in
commercial sex -- and in drug users, you've really got nothing much going on after treatment
begins, and that's because of that alignment of incentives that I talked about earlier. But in gay
men, you've got quite a dramatic rise starting three or four years after treatment became widely
available. This is of new infections.


What does that mean? It means that the combined effect of being less worried and having more
virus out there in the population -- more people living longer, healthier lives, more likely to be
getting laidwith HIV -- is outweighing the effects of lower viral load, and that's a very worrisome
thing. What does it mean? It means we need to be doing more prevention the more treatment we


Is that what's happening? No, and I call it the "compassion conundrum." We've talked a lot about
compassion the last couple of days, and what's happening really is that people are unable quite to
bring themselves to put in good sexual and reproductive health services for sex workers, unable
quite to be giving out needles to junkies. But once they've gone from being transgressive people
whose behaviors we don't want to condone to being AIDS victims, we come over all
compassionate and buy them incredibly expensive drugs for the rest of their lives. It doesn't make
any sense from a public health point of view.


I want to give what's very nearly the last word to Ines. Ines is a a transgender hooker on the
streets of Jakarta; she's a chick with a dick. Why does she do that job? Well, of course, because
she's forced into it because she doesn't have any better option, etc., etc. And if we could just teach
her to sew and get her a nice job in a factory, all would be well. This is what factory workers earn
in an hour in Indonesia: on average, 20 cents. It varies a bit province to province. I do speak to sex
workers, 15,000 of them for this particular slide, and this is what sex workers say they earn in an
hour. So it's not a great job, but for a lot of people it really is quite a rational choice. Okay, Ines.

We've got the tools, the knowledge and the cash, and commitment to preventing HIV too.

Ines: So why is prevalence still rising? It's all politics. When you get to politics, nothing makes

Elizabeth Pisani: "When you get to politics, nothing makes sense." So, from the point of view of a
sex worker, politicians are making no sense. From the point of view of a public health nerd, junkies
are doing dumb things. The truth is that everyone has a different rationale. There are as many
different ways of being rational as there are human beings on the planet, and that's one of the
glories of human existence. But those ways of being rational are not independent of one
another, so it's rational for a drug injector to share needles because of a stupid decision that's
made by a politician, and it's rational for a politician to make that stupid decision because they're
responding to what they think the voters want. But here's the thing: we are the voters. We're not
all of them, of course, but TED is a community of opinion leaders. And everyone who's in this
room, and everyone who's watching this out there on the web, I think, has a duty to demand of
their politicians that we make policy based on scientific evidence and on common sense. It's going
to be really hard for us to individually affect what's rationalfor every Frankie and every Ines out
there, but you can at least use your vote to stop politicians doing stupid things that spread HIV.

Vaccine and AIDS

Do you worry about what is going to kill you? Heart disease, cancer, a car accident? Most of us
worry about things we can't control, like war, terrorism, the tragic earthquake that just occurred in
Haiti. But what really threatens humanity? A few years ago, Professor Vaclav Smil tried to calculate
the probability of sudden disasters large enough to change history. He called these, "massively
fatal discontinuities," meaning that they could kill up to 100 million people in the next 50 years. He
looked at the odds of another world war, of a massive volcanic eruption, even of an asteroid
hitting the Earth. But he placed the likelihood of one such event above all others at close to 100
percent, and that is a severe flu pandemic. Now, you might think of flu as just a really bad cold, but
it can be a death sentence. Every year, 36,000 people in the United States die of seasonal flu. In
the developing world, the data is much sketchier but the death toll is almost certainly higher. You
know, the problem is if this virus occasionally mutates so dramatically, it essentially is a new
virus and then we get a pandemic.


In 1918, a new virus appeared that killed some 50 to 100 million people. It spread like wildfire and
some died within hours of developing symptoms. Are we safer today? Well, we seem to have
dodgedthe deadly pandemic this year that most of us feared, but this threat could reappear at any
time. The good news is that we're at a moment in time when science, technology, globalization is
converging to create an unprecedented possibility: the possibility to make history by preventing
infectious diseasesthat still account for one-fifth of all deaths and countless misery on Earth. We
can do this. We're already preventing millions of deaths with existing vaccines, and if we get these
to more people, we can certainly save more lives. But with new or better vaccines for malaria, TB,
HIV, pneumonia, diarrhea, flu, we could end suffering that has been on the Earth since the
beginning of time.


So, I'm here to trumpet vaccines for you. But first, I have to explain why they're important because
vaccines, the power of them, is really like a whisper. When they work, they can make history, but
after a while you can barely hear them. Now, some of us are old enough to have a small, circular
scar on our arms from an inoculation we received as children. But when was the last time you
worried about smallpox, a disease that killed half a billion people last century and no longer is with
us? Or polio? How many of you remember the iron lung? We don't see scenes like this
anymore because of vaccines.


Now, it's interesting because there are 30-odd diseases that can be treated with vaccines now, but
we're still threatened by things like HIV and flu. Why is that? Well, here's the dirty little
secret. Until recently, we haven't had to know exactly how a vaccine worked. We knew they
worked through old-fashioned trial and error. You took a pathogen, you modified it, you injected it
into a person or an animal and you saw what happened. This worked well for most
pathogens, somewhat well for crafty bugs like flu, but not at all for HIV, for which humans have no
natural immunity.


So let's explore how vaccines work. They basically create a cache of weapons for your immune
system which you can deploy when needed. Now, when you get a viral infection, what normally
happens is it takes days or weeks for your body to fight back at full strength, and that might be too
late.When you're pre-immunized, what happens is you have forces in your body pre-trained to
recognizeand defeat specific foes. So that's really how vaccines work. Now, let's take a look at a
video that we're debuting at TED, for the first time, on how an effective HIV vaccine might work.

Narrator: A vaccine trains the body in advance how to recognize and neutralize a specific
invader.After HIV penetrates the body's mucosal barriers, it infects immune cells to replicate. The
invader draws the attention of the immune system's front-line troops. Dendritic cells, or
macrophages, capture the virus and display pieces of it. Memory cells generated by the HIV
vaccine are activated when they learn HIV is present from the front-line troops. These memory
cells immediately deploy the exact weapons needed. Memory B cells turn into plasma cells, which
produce wave after wave of the specific antibodies that latch onto HIV to prevent it from infecting
cells, while squadrons of killer T cellsseek out and destroy cells that are already HIV infected. The
virus is defeated. Without a vaccine,these responses would have taken more than a week. By that
time, the battle against HIV would already have been lost.


Seth Berkley: Really cool video, isn't it? The antibodies you just saw in this video, in action, are the
ones that make most vaccines work. So the real question then is: How do we ensure that your
body makes the exact ones that we need to protect against flu and HIV? The principal challenge
for both of these viruses is that they're always changing. So let's take a look at the flu virus. In this
rendering of the flu virus, these different colored spikes are what it uses to infect you. And also,
what the antibodies use is a handle to essentially grab and neutralize the virus. When these
mutate, they change their shape, and the antibodies don't know what they're looking at
anymore. So that's why every year you can catch a slightly different strain of flu. It's also why in
the spring, we have to make a best guess at which three strains are going to prevail the next
year, put those into a single vaccine and rush those into production for the fall.


Even worse, the most common influenza -- influenza A -- also infects animals that live in close
proximity to humans, and they can recombine in those particular animals. In addition, wild aquatic
birdscarry all known strains of influenza. So, you've got this situation: In 2003, we had an H5N1
virus that jumped from birds into humans in a few isolated cases with an apparent mortality rate
of 70 percent.Now luckily, that particular virus, although very scary at the time, did not transmit
from person to person very easily. This year's H1N1 threat was actually a human, avian, swine
mixture that arose in Mexico. It was easily transmitted, but, luckily, was pretty mild. And so, in a
sense, our luck is holding out, but you know, another wild bird could fly over at anytime.


Now let's take a look at HIV. As variable as flu is, HIV makes flu look like the Rock of Gibraltar. The
virus that causes AIDS is the trickiest pathogen scientists have ever confronted. It mutates
furiously, it has decoys to evade the immune system, it attacks the very cells that are trying to
fight it and it quickly hides itself in your genome. Here's a slide looking at the genetic variation of
flu and comparing that to HIV, a much wilder target. In the video a moment ago, you saw fleets of
new viruses launching from infected cells. Now realize that in a recently infected person, there are
millions of these ships; each one is just slightly different. Finding a weapon that recognizes and
sinks all of them makes the job that much harder.


Now, in the 27 years since HIV was identified as the cause of AIDS, we've developed more drugs to
treat HIV than all other viruses put together. These drugs aren't cures, but they represent a huge
triumph of science because they take away the automatic death sentence from a diagnosis of
HIV, at least for those who can access them. The vaccine effort though is really quite
different. Large companies moved away from it because they thought the science was so
difficult and vaccines were seen as poor business. Many thought that it was just impossible to
make an AIDS vaccine, but today, evidence tells us otherwise.


In September, we had surprising but exciting findings from a clinical trial that took place in
Thailand.For the first time, we saw an AIDS vaccine work in humans -- albeit, quite modestly -- and
that particular vaccine was made almost a decade ago. Newer concepts and early testing
now show even greater promise in the best of our animal models. But in the past few months,
researchers have also isolated several new broadly neutralizing antibodies from the blood of an
HIV infected individual. Now, what does this mean? We saw earlier that HIV is highly variable, that
a broad neutralizing antibodylatches on and disables multiple variations of the virus. If you take
these and you put them in the best of our monkey models, they provide full protection from
infection. In addition, these researchers founda new site on HIV where the antibodies can grab
onto, and what's so special about this spot is that it changes very little as the virus mutates. It's
like, as many times as the virus changes its clothes, it's still wearing the same socks, and now our
job is to make sure we get the body to really hate those socks.


So what we've got is a situation. The Thai results tell us we can make an AIDS vaccine, and the
antibody findings tell us how we might do that. This strategy, working backwards from an antibody
to create a vaccine candidate, has never been done before in vaccine research. It's called retro-
vaccinology, and its implications extend way beyond that of just HIV. So think of it this way. We've
got these new antibodies we've identified, and we know that they latch onto many, many
variations of the virus. We know that they have to latch onto a specific part, so if we can figure out
the precise structure of that part, present that through a vaccine, what we hope is we can
prompt your immune system to make these matching antibodies. And that would create a
universal HIV vaccine. Now, it sounds easier than it is because the structure actually looks more
like this blue antibody diagram attached to its yellow binding site, and as you can imagine, these
three-dimensional structures are much harder to work on. And if you guys have ideas to help us
solve this, we'd love to hear about it.

But, you know, the research that has occurred from HIV now has really helped with innovation
with other diseases. So for instance, a biotechnology company has now found broadly
neutralizingantibodies to influenza, as well as a new antibody target on the flu virus. They're
currently making a cocktail -- an antibody cocktail -- that can be used to treat severe,
overwhelming cases of flu. In the longer term, what they can do is use these tools of retro-
vaccinology to make a preventive flu vaccine.Now, retro-vaccinology is just one technique within
the ambit of so-called rational vaccine design.

Let me give you another example. We talked about before the H and N spikes on the surface of the
flu virus. Notice these other, smaller protuberances. These are largely hidden from the immune
system.Now it turns out that these spots also don't change much when the virus mutates. If you
can cripple these with specific antibodies, you could cripple all versions of the flu. So far, animal
tests indicate that such a vaccine could prevent severe disease, although you might get a mild
case. So if this works in humans, what we're talking about is a universal flu vaccine, one that
doesn't need to change every year and would remove the threat of death. We really could think of
flu, then, as just a bad cold.


Of course, the best vaccine imaginable is only valuable to the extent we get it to everyone who
needs it. So to do that, we have to combine smart vaccine design with smart production
methods and, of course, smart delivery methods. So I want you to think back a few months ago. In
June, the World Health Organization declared the first global flu pandemic in 41 years. The U.S.
government promised150 million doses of vaccine by October 15th for the flu peak. Vaccines were
promised to developing countries. Hundreds of millions of dollars were spent and flowed to
accelerating vaccine manufacturing. So what happened?


Well, we first figured out how to make flu vaccines, how to produce them, in the early 1940s. It
was a slow, cumbersome process that depended on chicken eggs, millions of living chicken
eggs. Viruses only grow in living things, and so it turned out that, for flu, chicken eggs worked
really well. For most strains, you could get one to two doses of vaccine per egg. Luckily for us, we
live in an era of breathtaking biomedical advances. So today, we get our flu vaccines from
... chicken eggs, (Laughter)hundreds of millions of chicken eggs. Almost nothing has changed. The
system is reliable but the problem is you never know how well a strain is going to grow. This year's
swine flu strain grew very poorly in early production: basically .6 doses per egg. So, here's an
alarming thought. What if that wild bird flies by again? You could see an avian strain that would
infect the poultry flocks, and then we would have no eggs for our vaccines. So, Dan [Barber], if you
want billions of chicken pellets for your fish farm, I know where to get them. So right now, the
world can produce about 350 million doses of flu vaccine for the three strains, and we can up that
to about 1.2 billion doses if we want to target a single variant like swine flu. But this assumes that
our factories are humming because, in 2004, the U.S. supply was cut in half by contamination at
one single plant. And the process still takes more than half a year.


So are we better prepared than we were in 1918? Well, with the new technologies emerging
now, I hope we can say definitively, "Yes." Imagine we could produce enough flu vaccine for
everyone in the entire world for less than half of what we're currently spending now in the United
States. With a range of new technologies, we could. Here's an example: A company I'm engaged
with has found a specific piece of the H spike of flu that sparks the immune system. If you lop this
off and attach it to the tail of a different bacterium, which creates a vigorous immune
response, they've created a very powerful flu fighter. This vaccine is so small it can be grown in a
common bacteria, E. coli. Now, as you know, bacteria reproduce quickly -- it's like making yogurt --
and so we could produce enough swine origin flufor the entire world in a few factories, in a few
weeks, with no eggs, for a fraction of the cost of current methods.

Stigma - Treatment

So I want to start this talk by showing y'all a photo, and it's a photo many of you have probably
seen before. So I want you all to take a moment and look at this photo, and really reflect on some
of the things that come to mind, and what are some of those things, those words. Now, I'm going
to ask you all to look at me. What words come to mind when you look at me? What separates that
man up therefrom me?


The man in that photo is named David Kirby and it was taken in 1990 as he was dying from AIDS-
related illness, and it was subsequently published in "Life Magazine." The only real thing
separating me from Kirby is about 30 years of medical advancements in the way that we treat HIV
and AIDS.

So what I want to ask next is this: If we have made such exponential progress in combatting
HIV, why haven't our perceptions of those with the virus evolved alongside? Why does HIV elicit
this reaction from us when it's so easily managed? When did the stigmatization even occur, and
why hasn't it subsided? And these are not easy questions to answer. They're the congealing of so
many different factors and ideas. Powerful images, like this one of Kirby, these were the faces of
the AIDS crisis in the '80s and '90s, and at the time the crisis had a very obvious impact on an
already stigmatized group of people, and that was gay men. So what the general straight public
saw was this very awful thinghappening to a group of people who were already on the fringes of
society. The media at the time began to use the two almost interchangeably -- gay and AIDS -- and
at the 1984 Republican National Convention, one of the speakers joked that gay stood for: "Got
AIDS yet?" And that was the mindset at the time.

But as we started to understand the virus more and how it was transmitted, we realized that that
risk had increased its territory. The highly profiled case of Ryan White in 1985, who was a 13-year-
old hemophiliac who had contracted HIV from a contaminated blood treatment, and this marked
the most profound shift in America's perception of HIV. No longer was it restricted to these dark
corners of society, to queers and drug users, but now it was affecting people that society deemed
worthy of their empathy, to children.

But that permeating fear and that perception, it still lingers. And I want a show of hands for these
next few questions.

How many of you in here were aware that with treatment, those with HIV not only fend off AIDS
completely, but they live full and normal lives? Y'all are educated.

How many of you are aware that with treatment, those with HIV can reach an undetectable
status, and that makes them virtually uninfectious? Much less. How many of you were aware of
the pre- and postexposure treatments that are available that reduce the risk of transmission by
over 90 percent?


See, these are incredible advancements that we have made in fighting HIV, yet they have not
managed to dent the perception that most Americans have of the virus and those living with
it. And I don't want you to think I'm downplaying the danger of this virus, and I am not ignorant of
the harrowing past of the AIDS epidemic. I am trying to convey that there is hope for those
infected and HIV is not the death sentence it was in the '80s.


And now you may ask, and I asked this question myself initially: Where are the stories? Where are
these people living with HIV? Why haven't they been vocal? How can I believe these successes, or
these statistics, without seeing the successes? And this is actually a very easy question for me to
answer. Fear, stigma and shame: these keep those living with HIV in the closet, so to speak. Our
sexual histories are as personal to us as our medical histories, and when you overlap the two, you
can find yourself in a very sensitive space. The fear of how others perceive us when we're
honest keeps us from doing many things in life, and this is the case for the HIV-positive
population. To face social scrutiny and ridicule is the price that we pay for transparency, and why
become a martyr when you can effectively pass as someone without HIV? After all, there are no
physical indications you have the virus. There's no sign that you wear. There is safety in
assimilation, and there is safety in invisibility. I'm here to throw back that veil and share my story.

So in the fall of 2014, I was a sophomore in college and like most college students, I was sexually
active, and I generally took precautions to minimize the risk that sex carries. Now, I say generally,
because I wasn't always safe. It only takes a single misstep before we're flat on the ground, and my
misstep is pretty obvious. I had unprotected sex, and I didn't think much of it. Fast-forward about
three weeks, and it felt like I'd been trampled by a herd of wildebeest. The aches in my body were
like nothing I have felt before or since. I would get these bouts of fever and chill. I would reel with
nausea, and it was difficult to walk. Being a biology student, I had some prior exposure to
disease, and being a fairly informed gay man, I had read a bit on HIV, so to me, it clicked that this
was seroconversion, or as it's sometimes called, acute HIV infection. And this is the body's
reaction in producing antibodies to the HIV antigen. It's important to note that not everybody goes
through this phase of sickness, but I was one of the lucky ones who did. And I was lucky as in,
there were these physical symptoms that let me know, hey, something is wrong, and it let me
detect the virus pretty early.


So just to clarify, just to hit the nail on head, I got tested on campus. And they said they would call
me the next morning with the results, and they called me, but they asked me to come in and speak
to the doctor on staff. And the reaction I received from her wasn't what I was expecting. She
reassured me what I already knew, that this wasn't a death sentence, and she even offered to put
me in contact with her brother, who had been living with HIV since the early '90s. I declined her
offer, but I was deeply touched. I was expecting to be reprimanded. I was expecting pity and
disappointment, and I was shown compassion and human warmth, and I'm forever grateful for
that first exchange.


So obviously for a few weeks, I was a physical mess. Emotionally, mentally, I was doing OK. I was
taking it well. But my body was ravaged, and those close to me, they weren't oblivious. So I sat my
roommates down, and I let them know I'd been diagnosed with HIV, that I was about to receive
treatment, and I didn't want them to worry. And I remember the look on their faces. They were
holding each other on the couch and they were crying, and I consoled them. I consoled them
about my own bad news, but it was heartwarming to see that they cared. But from that night, I
noticed a shift in the way that I was treated at home. My roommates wouldn't touch anything of
mine, and they wouldn't eat anything I had cooked. Now, in South Louisiana, we all know that you
don't refuse food.

And I'm a damn good cook, so don't think that passed me by.


But from these first silent hints, their aversion got gradually more obvious and more offensive. I
was asked to move my toothbrush from the bathroom, I was asked to not share towels, and I was
even asked to wash my clothes on a hotter setting. This wasn't head lice, y'all. This wasn't scabies.
This was HIV. It can be transmitted through blood, sexual fluids like semen or vaginal fluids and
breast milk.Since I wasn't sleeping with my roommates, I wasn't breastfeeding them --

and we weren't reenacting "Twilight," I was of no risk to them and I made this aware to them, but
still, this discomfort, it continued, until eventually I was asked to move out. And I was asked to
move outbecause one of my roommates had shared my status with her parents. She shared my
personal medical information to strangers. And now I'm doing that in a roomful of 300 of y'all, but
at the time, this was not something I was comfortable with, and they expressed their discomfort
with their daughter living with me.


So being gay, raised in a religious household and living in the South, discrimination wasn't new to
me.But this form was, and it was tremendously disappointing because it came from such an
unlikely source. Not only were these college-educated people, not only were they other members
of the LGBT community, but they were also my friends. So I did. I moved out at the end of the
semester. But it wasn't to appease them. It was out of respect for myself. I wasn't going to subject
myself to peoplewho were unwilling to remedy their ignorance, and I wasn't going to let
something that was now a part of me ever be used as a tool against me.


So I opted for transparency about my status, always being visible. And this is what I like to call
being the everyday advocate. The point of this transparency, the point of this everyday
advocacy, was to dispel ignorance, and ignorance is a very scary word. We don't want to be seen
as ignorant, and we definitely don't want to be called it. But ignorance is not synonymous with
stupid. It's not the inability to learn. It's the state you're in before you learn. So when I saw
someone coming from a place of ignorance, I saw an opportunity for them to learn. And hopefully,
if I could spread some education, then I could mitigate situations for others like I had experienced
with my roommates and save someone else down the line that humiliation.


So the reactions I received haven't been all positive. Here in the South, we have a lot stigma due to
religious pressures, our lack of a comprehensive sex education and our general conservative
outlook on anything sexual. We view this as a gay disease. Globally, most new HIV infections occur
between heterosexual partners, and here in the States, women, especially women of color, are at
an increased risk. This is not a gay disease. It never has been. It's a disease we should all be
concerned with.


So initially, I felt limited. I wanted to expand my scope and reach beyond what was around me. So
naturally, I turned to the dark underworld of online dating apps, to apps like Grindr, and for those
of you who are unfamiliar, these are dating apps targeted towards gay men. You can upload a
profile and a picture and it will show you available guys within a radius. Y'all have probably heard
of Tinder. Grindr has been around for a lot longer, since it was much harder to meet your future
gay husband at church or the grocery store, or whatever straight people did before they found out
they could date on their phones.
So on Grindr, if you liked what you saw or read, you could send someone a message, you can meet
up, you can do other things.


So on my profile, I obviously stated that I had HIV, I was undetectable, and I welcomed questions
about my status. And I received a lot of questions and a lot of comments, both positive and
negative.And I want to start with the negative, just to frame some of this ignorance that I've
mentioned before.And most of these negative comments were passing remarks or
assumptions. They would assume things about my sex life or my sex habits. They would assume I
put myself or others at risk. But very often I would just be met with these passing ignorant
remarks. In the gay community, it's common to hear the word "clean" when you're referring to
someone who is HIV negative. Of course the flip side to that is being unclean, or dirty, when you
do have HIV. Now, I'm not sensitive and I'm only truly dirty after a day in the field, but this is
damaging language. This is a community-driven stigma that keeps many gay men from disclosing
their status, and it keeps those newly diagnosed from seeking support within their own
community, and I find that truly distressing. But thankfully, the positive responses have been a lot
more numerous, and they came from guys who were curious. And they were curious about the
risks of transmission, or what exactly "undetectable" meant, or where they could get tested, or
some guys would ask me about my experiences, and I could share my story with them.


But most importantly, I would get approached by guys who were newly diagnosed with HIV and
they were scared, and they were alone, and they didn't know what step to take next. They didn't
want to tell their family, they didn't want to tell their friends and they felt damaged, and they felt
dirty. And I did whatever I could to immediately calm them, and then I would put them in contact
with AcadianaCares,which is a wonderful resource we have in our community for those with
HIV. And I'd put them in contact with people I knew personally so that they could not only have
this safe space to feel human again, but so they could also have the resources they needed in
affording their treatment. And this was by far the most humbling aspect of my transparency, that I
could have some positive impact on those who were suffering like I did, that I could help those
who were in the dark, because I had been there, and it wasn't a good place to be. These guys came
from all different backgrounds, and many of them weren't as informed as I had been, and they
were coming to me from a place of fear. Some of these people I knew personally, or they knew of
me, but many more, they were anonymous. They were these blank profiles who were too afraid to
show their faces after what they had told me.


And on the topic of transparency, I want to leave y'all with a few thoughts. I found that with
whatever risk or gamble I took in putting my face out there, it was well worth any negative
comment, any flak I received, because I felt I was able to make this real and this tangible
impact. And it showed me that our efforts resound, that we can alter the lives that we encounter
for the good, and they in turn can take that momentum and push it even further. And if any of you
or anyone you know is dealing with HIV, or if you want to see what resources you have in your
community, or just educate yourself more on the disease, here are some wonderful national sites
that you can access and you are more than welcome to find me after this talk and ask me anything
you'd like.


We've all heard the phrase "to see the forest through the trees," so I implore all of you here to
really see the human through the disease. It's a very easy thing to see numbers and statistics and
only see the perceived dangers. It's a much harder thing to see all the faces behind those
numbers. So when you find yourself thinking those things, those words, what you might have
thought looking at David Kirby, I ask you instead, think son, or think brother, think friend and most
importantly, think human.Seek education when faced with ignorance, and always be mindful, and
always be compassionate.

Ethical Riddles

I'd like to share with you the story of one of my patients called Celine.

Celine is a housewife and lives in a rural district of Cameroon in west Central Africa. Six years ago,
at the time of her HIV diagnosis, she was recruited to participate in the clinical trial which was
running in her health district at the time. When I first met Celine, a little over a year ago, she had
gone for 18 months without any antiretroviral therapy, and she was very ill. She told me that she
stopped coming to the clinic when the trial ended because she had no money for the bus fare and
was too ill to walk the 35-kilometer distance. Now during the clinical trial, she'd been given all her
antiretroviral drugs free of charge, and her transportation costs had been covered by the research
funds. All of these ended once the trial was completed, leaving Celine with no alternatives. She
was unable to tell me the names of the drugs she'd received during the trial, or even what the trial
had been about. I didn't bother to ask her what the results of the trial were because it seemed
obvious to me that she would have no clue.Yet what puzzled me most was Celine had given her
informed consent to be a part of this trial, yet she clearly did not understand the implications of
being a participant or what would happen to her once the trial had been completed.


Now, I have shared this story with you as an example of what can happen to participants in the
clinical trial when it is poorly conducted. Maybe this particular trial yielded exciting results. Maybe
it even got published in a high-profile scientific journal. Maybe it would inform clinicians around
the world on how to improve on the clinical management of HIV patients. But it would have done
so at a price to hundreds of patients who, like Celine, were left to their own devices once the
research had been completed.

I do not stand here today to suggest in any way that conducting HIV clinical trials in developing
countries is bad. On the contrary, clinical trials are extremely useful tools, and are much needed to
address the burden of disease in developing countries. However, the inequalities that exist
betweenricher countries and developing countries in terms of funding pose a real risk for
exploitation,especially in the context of externally-funded research. Sadly enough, the fact
remains that a lot of the studies that are conducted in developing countries could never be
authorized in the richer countrieswhich fund the research.


I'm sure you must be asking yourselves what makes developing countries, especially those in sub-
Saharan Africa, so attractive for these HIV clinical trials? Well, in order for a clinical trial to
generatevalid and widely applicable results, they need to be conducted with large numbers of
study participantsand preferably on a population with a high incidence of new HIV infections. Sub-
Saharan Africa largely fits this description, with 22 million people living with HIV, an estimated 70
percent of the 30 million people who are infected worldwide. Also, research within the
continent is a lot easier to conduct due to widespread poverty, endemic diseases and inadequate
health care systems. A clinical trial that is considered to be potentially beneficial to the
population is more likely to be authorized, and in the absence of good health care systems, almost
any offer of medical assistance is accepted as better than nothing. Even more problematic reasons
include lower risk of litigation, less rigorous ethical reviews, and populations that are willing to
participate in almost any study that hints at a cure. As funding for HIV research increases in
developing countries and ethical review in richer countries become more strict, you can see why
this context becomes very, very attractive.


The high prevalence of HIV drives researchers to conduct research that is sometimes scientifically
acceptable but on many levels ethically questionable. How then can we ensure that, in our search
for the cure, we do not take an unfair advantage of those who are already most affected by the
pandemic?I invite you to consider four areas I think we can focus on in order to improve the way
in which things are done.


The first of these is informed consent. Now, in order for a clinical trial to be considered ethically
acceptable, participants must be given the relevant information in a way in which they can
understand,and must freely consent to participate in the trial. This is especially important in
developing countries,where a lot of participants consent to research because they believe it is the
only way in which they can receive medical care or other benefits. Consent procedures that are
used in richer countries are often inappropriate or ineffective in a lot of developing countries. For
example, it is counterintuitive to have an illiterate study participant, like Celine, sign a lengthy
consent form that they are unable to read, let alone understand. Local communities need to be
more involved in establishing the criteria for recruiting participants in clinical trials, as well as the
incentives for participation. The information in these trials needs to be given to the potential
participants in linguistically and culturally acceptable formats.


The second point I would like for you to consider is the standard of care that is provided to
participants within any clinical trial. Now, this is subject to a lot of debate and controversy. Should
the control group in the clinical trial be given the best current treatment which is
available anywhere in the world? Or should they be given an alternative standard of care, such as
the best current treatment available in the country in which the research is being conducted? Is it
fair to evaluate a treatment regimen which may not be affordable or accessible to the study
participants once the research has been completed?Now, in a situation where the best current
treatment is inexpensive and simple to deliver, the answer is straightforward. However, the best
current treatment available anywhere in the world is often very difficult to provide in developing
countries. It is important to assess the potential risks and benefits of the standard of care which is
to be provided to participants in any clinical trial, and establish one which is relevant for the
context of the study and most beneficial for the participants within the study.


That brings us to the third point I want you think about: the ethical review of research. An
effective system for reviewing the ethical suitability of clinical trials is primordial to safeguard
participants within any clinical trial. Unfortunately, this is often lacking or inefficient in a lot of
developing countries. Local governments need to set up effective systems for reviewing the ethical
issues around the clinical trialswhich are authorized in different developing countries, and they
need to do this by setting up ethical review committees that are independent of the government
and research sponsors. Public accountability needs to be promoted through transparency and
independent review by nongovernmental and international organizations as appropriate.


The final point I would like for you to consider tonight is what happens to participants in the
clinical trialonce the research has been completed. I think it is absolutely wrong for research to
begin in the first place without a clear plan for what would happen to the participants once the
trial has ended. Now, researchers need to make every effort to ensure that an intervention that
has been shown to be beneficial during a clinical trial is accessible to the participants of the
trial once the trial has been completed. In addition, they should be able to consider the
possibility of introducing and maintaining effective treatments in the wider community once the
trial ends. If, for any reason, they feel that this might not be possible, then I think they should have
to ethically justify why the clinical trial should be conducted in the first place.


Now, fortunately for Celine, our meeting did not end in my office. I was able to get her enrolled
into a free HIV treatment program closer to her home, and with a support group to help her
cope. Her story has a positive ending, but there are thousands of others in similar situations who
are much less fortunate.

Although she may not know this, my encounter with Celine has completely changed the way in
which I view HIV clinical trials in developing countries, and made me even more determined to be
part of the movement to change the way in which things are done.

I believe that every single person listening to me tonight can be part of that change. If you are a
researcher, I hold you to a higher standard of moral conscience, to remain ethical in your
research,and not compromise human welfare in your search for answers. If you work for a funding
agency or pharmaceutical company, I challenge you to hold your employers to fund research that
is ethically sound. If you come from a developing country like myself, I urge you to hold your
government to a more thorough review of the clinical trials which are authorized in your
country. Yes, there is a need for us to find a cure for HIV, to find an effective vaccine for malaria, to
find a diagnostic tool that works for T.B., but I believe that we owe it to those who willingly and
selflessly consent to participate in these clinical trials to do this in a humane way.