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LEGISLATIVE BEAT

Huge Step Toward ‘Personalized’ Treatment

KRAS Gene Mutation Claries Colorectal Cancer Drug Choice

By Mary M. Miller

How big is the recent discovery o agene mutation that helps defne which patients might — and which patientswill not — beneft rom two newcancer drugs?“BIG!” shouts Dr. Heinz-Jose Lenz enthusiastically. “It’s the frstestablished molecular marker that willbe used in daily practice or colorectalcancer.” In less than two years, aleap has been made rom researchlaboratory to doctor’s ofce. That’senormously exciting to Dr. Lenz, whoworks in both worlds as scientifcdirector o the Cancer GeneticsPrograms, and co-director o theGastrointestinal Oncology Programat University o Southern Caliornia’sNorris Cancer Center. (He is also amember o C3: Colorectal CancerCoalition’s Medical Review Network). At frst glance, the news mightseem negative: Among peoplewith metastatic colorectal cancer,approximately 35 to 40 percent have amutated KRAS gene. What this meansis that somewhere in the process o cancer development, the normal genehas mutated and now is changing theway signals are communicated insidethe cancer cell.

1225 King Street, 2nd Floor, Alexandria, VA 22314

(703) 548-1225 • www.FightColorectalCancer.org

Several large analyses o clinical trialshave ound that colorectal cancer patients whose tumors have a mutatedKRAS gene do not beneft romErbitux® (cetuximab) or Vectibix™(panitumumab).Despite this news, there is a positiveside or patients with mutated KRAS,notes Kate Murphy, C3 Directoro Research Communication and25-year colon cancer survivor. “Theywill be able to avoid side eects andexpense o these medicines, and avoidwasting crucial weeks” in ineectivetreatment by moving right to other drugtreatments.

continued on page 6

VOLUME 3, ISSUE 4 SUMMER 2008

FROM THEPRESIDENT’S DESK .................2ADVOCACY

Heartland Advocates

..................3

Battle for Cancer Dollars Likely

to Spill into New Year

.................4PATIENT INFORMATION

C3 Answer Line: A Personal Voiceon the Phone

..............................5LEGAL FRONT

Discrimination Based on Genetics

Will Soon be Illegal

.....................7

Moving towards better care and a cure

C3: MomentumC3: Momentum

VOLUME 4, ISSUE 1 FALL 2008

Winning the fght against colorectal cancer

P H O T O : J O N N A L I C K

Nurse Practitioner Taline Khoukaz and Dr. Lenz

IN THIS ISSUE

www.FightColorectalCancer.org2

Each summer, the American Societyo Clinical Oncology holds an annualmeeting that brings together thousandso oncologists rom around the world.This year’s meeting was abuzz withnews about how the KRAS gene couldtell colorectal cancer patients a lotabout how their tumors will respondto epidermal growth actor receptor(EGFR) inhibitors. In one way, thenews was simple: patients with tumorsthat have a mutated KRAS gene do notrespond to Erbitux® or Vectibix

™

(see page 1).

This has been demonstratedconsistently across many trials.But in another way, the news waslayered and complicated and raisedmany more questions: Where would patients get tested? Who should gettested? Were the tests reliable? Wouldinsurance cover the cost o the test? I a patient’s tumor had the mutation, wouldinsurance companies reuse to pay orErbitux and Vectibix? And where doesthe Food and Drug Administration(FDA) weigh in on this?C3 has answers to some o thosequestions in the KRAS section o itswebsite (www.FightColorectalCancer.org/KRAS). Some answers to thesequestions, however, will take time.FDA is evaluating the data, whichraises other questions. How muchand what kind o data is required? Isthis an issue o treatment efcacy or patient saety? Ultimately, will FDArequire KRAS testing beore thosedrugs are given to patients?Will private insurers and Medicareact beore FDA does in an eort to

FROM THE PRESIDENT’S DESK

Board of Directors

Nancy Roach

Board Chair

Alan Balch, PhD,

Vice Chair

Greg Crafts,

Treasurer

Robert Erwin,

Board Secretary

Carlea Bauman,

President

Steven Depp, Ph.D. Andrew Giusti, Ph.D.

Medical Review Network

Mace Rothenberg, MD (Chair)

Vanderbilt University Medical Center

Nancy Baxter, MD, FRCSC

University of Toronto

Al B. Benson III, MD, FACP

Northwestern University

Richard Goldberg, MD

University of North Carolina

Axel Grothey, MD

Mayo Clinic College of Medicine

Heinz-Joseph Lenz, MD, FACP

University of Southern California

John Marshall, MD

Georgetown University Medical Center

Howard McLeod, PharmD

University of North Carolina

Neal Meropol, MD

Fox Chase Cancer Center

Edith Mitchell, MD

Thomas Jefferson University

Daniel Sargent, PhD

Mayo Clinic College of Medicine

Joel Tepper, MD

University of North Carolina

Is It All in the Genes?

By Carlea Bauman

President

save $10,000 (the average cost o amonth’s therapy o Erbitux or Vectibix) per patient? Should patients with themutated KRAS gene have the rightto choose a drug that will almostcertainly not help them, but will almostcertainly have side eects, some o which may be severe? At C3, we have been speaking with the various companies and agencies thatwill have an impact on the answers tothese questions. We are making surethat as decisions are made, the needso colorectal cancer patients are rontand center.In keeping with a discussion aboutgenes, one thing we do know nowis that patients’ genetic inormation(such as KRAS mutational status) canno longer be used against them insituations o employment and healthinsurance coverage

(see page 7)

. Forthat, thanks are due to the incrediblework o the Genetic Alliance, a patientadvocacy group based in Washington,DC. Genetic Alliance has beenworking or more than 10 years to getlegislation passed that would protect patients. Their hard work fnally paid o this spring when the GeneticInormation Nondiscrimination Actwas signed into law.

MARK YOURCALENDAR

Now accepting pinand bracelet ordersfor Colorectal CancerAwareness Month 2009

Order online atwww.FightColorectalCancer.org

Save the Date:

Call-on Congress 2009

March 22nd – 25th

Thinking Aheadto the Holidays

Holidays bring challenges andopportunities for everyone, but especiallyto those ghting cancer during theholiday months. For the December issue

Momentum,

we’d love to include ideasfrom you on how to achieve the bestholiday gift we can give to ourselvesand our families: Comfort and joy. Whattraditions, foods and attitudes createcomfort for you and your family duringthis time? What brings joy into yourhome? Share with us and other readers.Send comments by Oct. 6 toHolidays@FightColorectalCancer.org

C3 Momentum Fall 20083

LEGISLATIVE BEAT

ADVOCACY

Heartland Advocates Lead the Charge

By Carlene Canton

continued on page 7

“You’re the boss o Congress. Act likeit.”That is the rallying cry that turnsordinary people into extraordinaryadvocates.“We see it happen all the time,” saysCarlea Bauman, C3’s President. “Atfrst, patients and caregivers ocus ontheir personal situations. Then theyrealize that they can help others whilehelping themselves. They fnd the passion and the strength to take theshock o a cancer diagnosis and turn itinto something positive. They becomeadvocates.”C3’s outgoing Grassroots CoordinatorDusty Weaver knows this frsthand.From his experience with rectal cancerin 2000, Dusty learned that fghtingcolorectal cancer is emotionally trying, physically exhausting and mentallychallenging. But he also learned thatwhen he crossed that fnish line, hehad the power within himsel to takethose experiences and use them to helpothers.His frst step as an advocate wassigning up or C3’s advocacy training.He kept on stepping all the way toWashington, DC where he met withcongressional representatives andlearned to speak up or the resourcesand research that colorectal cancer patients need.He didn’t stop there. He beganrecruiting, helping other newcomers tothe world o advocacy fnd their voicesand take their own frst steps. Suzanne Lindley is one o Dusty’smentees.Suzanne’s journey as an advocatebegan 10 years ago when she was a31-year-old mother o two young girls. Ater Suzanne realized that she couldadvocate or hersel inside the medicalsystem, she began to reach out and helpothers. With C3 and Dusty’s support,Suzanne has blossomed rom a shy andquiet bystander into a savvy advocatewho gets calls rom Congressionalofces, testifes beore Congress andhas made 12 trips to DC rom her homein Texas in 2008 alone.She has even been asked to provideeedback by Texas Senator KayBailey Hutchison on unding or theNational Institutes o Health andon the Comprehensive Cancer CareImprovements Act (CCCIA), which iscurrently pending in Congress.Suzanne also discovered that she wasmore eective i she was willing tomake some o her personal experiences public.Suzanne credits Dusty with inspiringher to join the advocacy world andshare her experiences. “Early on hetold me, ‘You have a story. Put it togood use,’’’ Suzanne said. “His ace just lights up when he’s working. His passion or this is contagious.”Dusty applauds the work o Joe Arite,C3’s Director o Policy or helpingadvocates fnd their voices. “Joe knowshow things work and knows how people’s energy can be most eectivelyspent,” Dusty said. “We don’t needto re-invent the wheel. Joe shows uswhere to ocus our work.”Dusty has served as C3’s volunteerGrassroots Coordinator sincethe organization ormed in 2005.Momentum readers have enjoyed“Dusty’s Recipe or Action” in eachnewsletter. This all, he will step downrom the position and allow anotheradvocate to take the lead – but thatdoesn’t mean his days o colorectalcancer advocacy are over. In act, hewill be speaking to colorectal cancer patients about advocacy this all as part o a program C3 is doing with TheWellness Community

(see box, page 7)

.“What people see in Suzanne and meis that we’re regular people,” Dustysaid. “I live in Conway, Arkansas andSuzanne lives in Canton, Texas. Werepresent stories that are repeatedover and over again. Regular peopleget cancer and they fght it andthen they choose to do somethingconstructive with their experience.”For Dusty and Suzanne, that’s the power o advocacy.

Dusty Weaver and Suzanne Lindley areboth advocates extraordinaire.

“We’re regular people. I live inConway, Arkansas and Suzannelives in Canton, Texas. Regularpeople get cancer and theyfght it and then they choose todo something constructive withtheir experience.”