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4, 2 VOLUME 3, ISSUE 4 Winning towards better care and a cure Moving the fight against colorectal cancer WINTER 2009 SUMMER 2008
Major Progress in 2008 Brightens Hope for Future
By Mary M. Miller
Colorectal cancer used to be the “unmentionable cancer” not discussed in polite company. Today, colorectal cancer survivors and advocates parade through the halls of Congress proudly sporting “Cover Your Butt” T-shirts, making sure their stories are heard and action is taken. Ten years ago, there was one drug to treat colorectal cancer. Today there are seven, including three targeted monoclonal antibodies. Researchers are pinpointing gene mutations that begin to explain why some cancers occur or some drugs don’t work for some people. Surgeons are developing new techniques to successfully treat cancers that have spread beyond the colon. But even with remarkable advances in treatment, it’s achingly clear that this
C3 Advocates take on Washington, DC at Call-on Congress, March 2008
cancer can be prevented very often, or cured if found early enough. Yet nearly half of Americans over age 50 don’t get screened for colorectal cancer. The Colorectal Cancer Coalition’s (C3’s) mission is to win the fight against colorectal cancer through research, empowerment and access. “C3 plays a key role in advocating for patients at the highest levels. Its voice is heard loud and clear by Congress, the National Institutes of Health, and by leaders in academic oncology,” said Dr. Neal Meropol, Chair of the National Cancer Institute’s Colon Task Force. This issue of Momentum summarizes some of the past year’s most important medical advances, plus how C3 staff and advocates make your voice heard in the fight against colorectal cancer.
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IN THIS ISSUE
FROM THE PRESIDENT’S DESK ................2 CALL-ON CONGRESS ......................................3 ADVANCES IN SCIENCE ......................................4 THE LEGISLATIVE FRONT ......................6 WINTERIZE YOUR EXERCISE ..............................7
C3 Research Advocacy Training, January 2008
1414 Prince Street, Suite 204, Alexandria, VA 22314 (703) 548-1225 • www.FightColorectalCancer.org
FROM THE PRESIDENT’S DESK
Board of Directors
Nancy Roach, Board Chair Alan Balch, Ph.D, Vice Chair Greg Crafts, Treasurer Robert Erwin, Board Secretary Carlea Bauman, President Steven Depp, Ph.D. Andrew Giusti, Ph.D. Medical Review Network
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 Medical Beat
On the Hill
Together We Can
By Carlea Bauman President
President-Elect Barack Obama will soon take the oath of office. However you voted in the 2008 election, we all know that the new Administration, along with a new Congress, will change our government. As I watched Senator John McCain’s gracious concession speech, I was struck by his reminder that we are all Americans, and that by working together, we can move the United States forward. As I watched President-Elect Obama’s acceptance speech, I was equally struck by his ending, “Yes we can.” Together, we can win the fight against colorectal cancer. C3 was founded with the knowledge that colorectal cancer can be eliminated. During the election cycle, we began connecting with potential new leaders in Congress and the Administration so that we can start 2009 running. Here’s what we can do: • Press Congress to create a national screening program for colorectal cancer, modeled after the National Breast and Cervical Cancer Screening program that was created in the late 1990s and has already helped over three million women. • Work with the National Cancer Institute (NCI) to fund research that will result in simpler, accurate screening tests, and better treatments for patients. • Urge Congress to increase research funding at the NCI (see page 6) through legislation that will be introduced by Senators Ted Kennedy (D-MA) and Kay Bailey Hutchison (R-TX). • Work with the NCI and the Food and Drug Administration (FDA) to ensure that research results reach patients quickly. • Push Congress to ensure that the FDA is no longer overburdened and underfunded. • Work with the FDA to ensure that the needs of colorectal cancer patients are represented during the drug and device review process. Together, we can work for change. • Congress and the President report to us, the voters. And they listen to us, especially when we speak loudly. Reach out to the new president, your senators and representative. Make sure they know you expect them to make colorectal cancer a national priority by supporting these initiatives. Log on to http://advocacy.fightcrc.org to take action. • Ramp up your fight against colorectal cancer by joining C3 at the Call-on Congress in Washington, DC (page 3). After three days of camaraderie, advocacy training and face-to-face meetings with your elected officials, you will be part of C3’s core efforts to eliminate colorectal cancer. • As we look forward to the future, C3 is also celebrating what’s happened in the last year. Look at pages 4 and 5 and take pride in knowing that your support of C3 made those accomplishments possible. Consider investing in our future efforts with a donation with the enclosed envelope or at www. FightColorectalCancer.org/Donate. And as always, we want to celebrate the real heroes of the fight against colorectal cancer: the patients who participate in clinical trials. C3 helps match patients to available clinical trials, which provide the building blocks for development of new treatments and techniques. Interested folks can call the C3 Answer Line at 877-427-2111 for more information. Together, we can build a better world. Together, we can beat colorectal cancer.
CALENDAR Action C3 headquarters is on the move! Dusty’s Recipe for
We outgrew our space and moved to a new office. You can now reach us at: 1414 Prince Street Suite #204 Alexandria, Virginia 22314 Our phone and fax numbers have not changed: Phone: 703-548-1225 Fax: 202-315-3871 Answer Line: 877-427-2111
CALL-ON CONGRESS LEGISLATIVE BEAT
Register Now and Join C3’s Call-on Congress
By Carlene Canton For the third consecutive year, C3 invites anyone touched by colorectal cancer in any way – as a patient, caregiver, family member, friend, or medical professional – to come to Washington, DC and speak out.
Speak out for research dollars that bring us closer to a cure. Speak out for insurance-covered screenings that prevent colon cancer or find it early when it is most curable. Speak out for health care reforms so that illness doesn’t lead to bankruptcy. Speak out for your loved ones who lost their personal battle and cannot speak out for themselves. Speak out for your loved ones who may face colorectal cancer in their future.
On the Hill
What you do. What you get.
During Call-on Congress, your three days in Washington, DC will include: ✓ A welcome dinner to meet your fellow advocates – many destined to become very good friends! ✓ A day of training in grassroots lobbying from the professionals, led by Joe Arite, C3 Director of Policy. “Our advocates are briefed on the ins and outs of the legislative process and on C3’s legislative priorities,” he said. “They prepare short statements that get their points across efficiently and effectively and train in presenting those statements to their elected representatives.”
✓ A day of meetings with elected officials on Capitol Hill during the day. It’s a chance to see how the system works by being a part of it. ✓ An evening of celebrating your newfound inner-lobbyist with your new friends at a special Advocate Awards Dinner after your day of being “on the Hill.” ✓ And you’ll get your own coveted “Cover Your Butt” T-shirt to announce your allegiance loud and clear! Your cost for this three-day event is $150 plus travel and lodging. For more information, visit http://advocacy. fightcrc.org/CallonCongress2009 or email joe.arite@FightColorectalCancer.org
REGISTRATION NOW OPEN
Meet One C3 Advocate Who Called on Congress and Left ‘Empowered’
My name is Rev. Vaughn ProfitBreaux and I am a colorectal cancer survivor. My experience with last year’s Call-on Congress was both powerful and empowering. Rev. Vaughn I decided to Profit-Breaux participate because I needed to advocate on behalf of those, like me, who didn’t have insurance at the time of my diagnosis. This was not the first time I have lobbied on issues of importance. However, it was the first time I have lobbied on behalf of something of such personal importance. Lives will be lost or saved as a result of what we do. C3 gave me the tools I needed to lobby effectively and make proposals to the staff of my representative and two senators. The training helped lay the groundwork for my grassroots lobbying efforts. One of my favorite parts of the event was the opportunity to meet people from around the country who were at varying levels of treatment or recovery from colorectal cancer. All of us learned that working together, we can push this fight forward. Margaret Mead said “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” Callon Congress is your chance to be one of those citizens.
What: C3’s Annual Call-on Congress: A chance to visit our nation’s capital as a constituent with a mission and a message. When: March 22-March 25, 2009 Where: Halls of Congress, Washington, DC Who: You! How: Register today with C3 and learn how to take your fight out of the doctor’s office and into Congress. The deadline to register (Feb. 2, 2009) is fast approaching. Visit http://advocacy.fightcrc.org/ CallonCongress2009 to register. Why: Because it makes a difference! Your voice will be one of many that elected officials will hear. It could be the one that reaches their hearts and not just their ears.
C3 Momentum Winter 2009
Dusty’s Recipe for Action
C3 YEAR IN REVIEW
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Cautions issued on ESAs
The Food and Drug Administration (FDA) issued strong new warnings about prescribing erythropoetinstimulating agents (ESAs)—drugs used to increase red blood cells to reduce the need for blood transfusions in cancer patients getting chemotherapy. Marketed as Aranesp, Procrit, and Epogen, the drugs have been connected in some patients to faster tumor growth or shorter survival, plus higher risk for blood clots. The FDA now recommends ESAs only be given to patients receiving palliative chemotherapy when their hemoglobin falls below 10 g/dL. C3 staff provided extensive comment to the FDA during its review process; reviewed the Medication Guide; and helped Congressional staff prepare for oversight hearings about direct-toconsumer ads touting ESAs.
From Lab to Doctor’s Office: Medical Advances and Surprises
Here are some of this past year’s most important events for improved diagnosis and treatment of colorectal cancer. For details on any topic, search the C3 website (www. FightColorectalCancer.org).
“Deficient DNA repair” and 5-FU
During a human life, millions of cells reproduce, so occasional “DNA copying” mistakes are common. Usually the body detects, then repairs or destroys abnormal cells. In people with deficient “mismatch repair genes,” accumulating genetic mistakes can lead to cancer. This occurs in hereditary non-polyposis colorectal cancer (HNPCC or Lynch Syndrome), plus in up to 15% of non-hereditary colorectal cancers. Clinical studies in 2008 found that tumors with “deficient mismatch repair genes” do not benefit from 5-FU-based treatment for stage II or III colon cancer. And 5-FU treatment may actually be associated with worse outcomes in stage II cancers. C3 urges patients, especially those at stage II, to talk to their doctors about testing before starting treatment.
Flat lesions as important as polyps
American experts were surprised when a large 2008 study found that nonpolypoid lesions (clumps of abnormal cells that are flat or slightly depressed) were significantly more likely than polyps to contain colorectal cancer. Non-polypoid lesions were spotted far more often (10% of people in this study) than previously believed. This means that 1) it’s crucial to do a very thorough bowel-cleaning preparation before colonoscopy; and 2) doctors need training and enough time during procedures to detect harder-to-spot non-polypoid lesions.
New screening guidelines
Two expert panels updated colorectal cancer screening recommendations for average-risk adults. A collaboration led by the American Cancer Society added two new tests that could be used (DNA stool testing and CT colonography—or so-called virtual colonoscopy). This group also differentiated between tests that can prevent cancer by detecting pre-cancerous lesions (by sigmoidoscopy every 3 to 5 years, or colonoscopy every 10 years); and tests that primarily detect cancer (highsensitivity stool samples done yearly with abnormal results checked by colonoscopy). C3 Founding Member and Research Advocate Pamela McAllister, Ph.D., served on the American Cancer Society panel. Secondly, the U.S. Preventive Services Task Force now recommends that routine screening end at age 75, and no screening be done after age 85.
A drug that can prevent recurrence or extend one person’s life may do nothing at all for another person. The only way to know which drug worked was by trial and error, until today’s new genetic techniques came into use. KRAS mutation affects treatment
Thirty to forty percent of people with colorectal cancer have tumor cells showing a mutation in the “KRAS” gene. Large studies in 2008 found that people with the KRAS mutation do not benefit from two new “targeted drugs” (Erbitux and Vectibix). Conversely, people without the KRAS mutation respond better to those drugs than previously believed. Before starting to take these drugs, patients should have a KRAS-mutation test done on tissue samples.
Genetic discrimination made illegal
With genetics becoming ever more vital in cancer diagnosis and treatment, the potential for genetic-based discrimination rises. The Genetic Information Nondiscrimination Act (GINA) passed in 2008 was hailed by Senator Ted Kennedy (D-MA) as the decade’s most important civil rights legislation. The law prohibits insurers and employers from making job or insurance coverage decisions based on either genetic test results or family medical history. The law, which takes effect in 2009, does not apply to someone who already has a genetically-related disease, nor does it apply to members of the military. GINA also does not cover life and disability insurance decisions.
C3 is Busy with Congress, Researchers, Patients
With new scientific discoveries every month, it’s vital to keep consumers updated and their voices heard in clinics and Congress. C3 staff and advocates are working steadily— sometimes quietly, sometimes not so quietly—on issues that touch all Americans.
When C3 talks, legislators listen
C3 has trained nearly 100 advocates-including 40 in 2008--to participate in both national and local government deliberations. In 2008, C3 launched the “Cover Your Butt” campaign asking Congress to mandate colorectal cancer screening coverage for all. At the annual Call-On Congress last March, C3 consumer advocates held 100 faceto-face meetings with legislators. The “Congressional Butt-In” blitz generated 2,000 phone calls. And C3 advocates pushed for screening coverage in the Minnesota, Louisiana, South Carolina and Washington state legislatures.
Rep. Kaye Granger (R-TX) has worked tirelessly for a decade to get colorectal cancer screening legislation passed. Carlea Bauman (left) and Joe Arite (right) presented Rep. Granger with the 2008 Congressional Champion Award in June 2008.
A consumer voice in clinical research
C3’s third annual research advocacy training in January 2008 produced 25 new research advocates. They will join C3 advocates already active on the nation’s most prestigious research and clinical committees at the National Cancer Institute (NCI), the Food and Drug Administration, and more.
C3 staff and advocates bring consumer perspective to Phase I, II and III clinical trial advisory committees, focusing on patient safety and ways to enroll more patients in trials. C3 also works with biotech and pharmaceutical firms to stay abreast of emerging research and regulatory issues.
More than 10,000 readers receive C3’s quarterly newsletter Momentum. About 4,000 get C3’s monthly e-newsletter. And hundreds of readers receive C3’s email updates and RSS feeds several times every week about breaking political and clinical news.
C3 tracks tax dollars
One of those wonkish-yet-terribly important issues is a new system proposed by the National Institutes of Health (NIH) to track research spending for specific diseases. NIH reports spending to Congress, and Congress considers these reports when determining future funding. C3 learned that problems with the new system’s proposed implementation might result in inaccurate reports to Congress. Joe Arite, C3’s Director of Policy, and other advocates are working with NIH and NCI to ensure that colorectal cancer spending is accurately and completely reported to Congress. continued on page 6
C3 keeps consumers informed
In 2008, C3 partnered with The Wellness Community to create the popular 80-page booklet “Frankly Speaking about Colorectal Cancer,” available by calling the C3 Answer Line (877-4CRC-111). C3’s new Answer Line has provided personal help to hundreds of callers in its first 9 months. C3’s website (www.FightColorectalCancer.org) gets more than 21,000 unique visitors a month—double last year’s rate—and has expanded to more than 900 pages of clinical information.
“C3 has its ‘finger on the pulse’ to make sure that patients are benefiting from the latest discoveries in prevention and treatment.” Dr. Neal Meropol Chair, NCI Colon Task Force
C3 Momentum Winter 2009
THE LEGISLATIVE FRONT
Re-ignite the War Against Cancer
by Joe Arite
In 1971, President Nixon addressed the nation and said: “I will…ask for $100 million to launch an intensive campaign to find a cure for cancer... The time has come in America when the same kind of concentrated effort that split the atom and took man to the moon should be turned toward conquering this dreaded disease.” Then he signed the National Cancer Act into law. Since 1971 we have made advances in our understanding of cancer. New therapies have been developed and survival rates have risen. Millions of people are alive today because of the legislation passed in 1971. Unfortunately, cancer is still the second leading killer in America, and the National Cancer Institute (NCI) predicts it will become the Number One killer within the next ten years. Two US senators have decided to again ramp up the war against cancer. Senator Ted Kennedy (D-MA), who is currently battling cancer himself, and Senator Kay Bailey Hutchinson (R-TX) are working with the cancer community--including C3--to develop legislation that will strengthen our country’s commitment to ending the pain and suffering of cancer.
Senator Ted Kennedy (D-MA) and Senator Kay Bailey Hutchinson (R-TX)
Features of the bill include: • More money to NCI for better research, incentives to private companies for investing in research, and programs encouraging collaboration among government and private researchers • Efforts to get more patients into clinical trials. Currently only five percent of adults with cancer participate in clinical trials – even though they often represent excellent treatment options for patients • Money for programs that promote healthy behaviors for cutting cancer
risk, such as smoking cessation and healthy eating • Programs to improve access so more patients are screened, and screened early - which is critical in colorectal cancer • Efforts to encourage more doctors and nurses to enter the oncology field The Kennedy-Hutchinson legislation has the potential to completely change the way we wage our war against cancer. You can support this legislation by logging on to C3’s Online Action Center at http://advocacy.fightcrc.org and sending a message to your elected officials about it.
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C3 is Busy with Congress, Researchers, Patients
C3 friends raise $$ for research
The Lisa Fund, established in honor of one of C3’s founders Lisa Dubow, awarded its first grant in 2008. Dr. Yaguang Xi, at the University of South Alabama’s Mitchell Cancer Center, received a $30,000 fellowship to support his research into prognostic biomarkers. Meanwhile, C3 grassroots activists did their own fundraising to support research. To honor his late mother Lisa
Dubow, Sean Twersky raised $10,000 for the Lisa Fund. In memory of her husband Michael Evans, Beth-Anne Jacobs ran 36 miles to raise $6,000. Josh Young ran a marathon and raised $10,000 in honor of his mother, Lynda. The Black-Owen wedding raised $1,500 in donations in memory of Don Owen, the groom’s father. And Allison Kingston raised $1,500 at her 50th birthday party—an age she “wasn’t supposed to see” after a high-risk stage
II diagnosis five years ago. With friends and activists like all of these, people are never alone when they fight colorectal cancer. To keep updated on C3’s policy work, log onto http://advocacy.fightcrc. org. To sign up for the e-newsletter updates, or find out more about any of these efforts, go to www. FightColorecctalCancer.org.
WINTERIZE YOUR EXERCISE
Exercise Improves Health and Survival Odds: Take It One Step –or Lap -- At a Time
by Carlene Canton
The day after returning home from colon cancer surgery, Gordon Cole knew there was something he had to do. He gathered up his determination, did his best to ignore the pain, and “just sucked it up and did it.” He walked around the block. And a week later he walked a mile. He’s been moving pretty constantly ever since. Cole, 59, adds his voice to the scientific findings of researchers, the advice of medical experts and the firsthand experience of other cancer patients: find a way to keep moving. You can probably find a couple of dozen reasons not to exercise. But as a cancer patient, there’s one very compelling reason to hit the pavement, treadmill, or pool. “Exercise not only helps in recovery from treatment but may help prevent recurrences and definitely helps fight fatigue,” says Dr. Al Benson III from the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. “Perhaps most importantly, people who exercise report a better quality of life than those who do not.” It’s been five years since Cole, a stage IV colorectal cancer survivor, took that first walk. He exercises a minimum of three times per week - and it’s serious stuff: hiking, walking four to five miles, bike riding, elliptical machine, and/or weights.
PHOTO: KIMBERLY DAWN PHOTOGRAPHY
Not even chemotherapy deters him. When he’s in treatment, he spends some time on the stationary bike or elliptical machine and doing light stretches. The day after he finishes chemo, he’s back to his full routine. Erika Hanson Brown, 64, also finds that the secret to exercise is sticking to your routine. “I’m firmly convinced that I’m alive today because I was an exercise nut before I was diagnosed and a daily exerciser during and after treatment.” She was diagnosed with stage III colorectal cancer in 2002 and shows no evidence of disease since her surgery and chemo. Exercise not only helped her fight cancer, she said, but the accompanying depression as well. Studies show that endorphins created by regular exercise may well ease stress, fatigue, and depression– all common side effects of both the diagnosis and treatment of cancer. There’s also the psychological benefit that comes from a sense of community and belonging. “There were days when I only got out of bed to go to the pool because I knew people who cared about me were waiting to see me,” Hanson Brown said. By showing up at the pool, she might well have been improving her chances at survival. A 2006 study found that six months after completing therapy, those who exercised (the equivalent of walking an hour daily for 6 days a week) were almost 50 percent more likely to be alive and free of cancer than those who were inactive. Other studies are pointing in the same direction.
Erika Hanson Brown swims daily
the challenges of treatment and its side effects. But exercise can improve your chances of finding your way back to health -- one step at a time.
Winterize Your Exercise
Momentum offers a few ideas to help winterize your exercise program so the winter months don’t throw you off track and you can keep right on going without losing any, well, momentum. Head to the mall: No, not to shop, to walk! Time things so you’re avoiding the most crowded time, especially if your white cell counts are low during chemo. But here’s a track that is free and sheltered from the elements. Dive in: Indoor pools can be found at health clubs, YMCAs and YWCAs, colleges and municipal recreation centers and many offer water aerobics classes as well as lap swimming. Bundle up: Wear weather appropriate clothing when exercising outside. If you’re on FOLFOX, exercising outdoors in cold weather is not a good idea. Talk to your doctor. Research: To find continually updated research summaries and links to information about how exercise affects fatigue, strength, disease, or even mental status, go to the C3 home page at www. FightColorectalCancer.org and type “Exercise” in the search box. 7
Exercise is now part of Gordon Cole’s regular routine
C3 Momentum Winter 2009
That said, remember to get your doctor’s approval before starting any new exercise regimen and don’t forget to be kind to yourself as you work through
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This free 80-page booklet can be ordered by calling the C3 Answer Line at 877-4CRC-111 (877-427-2111) or online at FightColorectalCancer.org/ FranklySpeaking.
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