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5, 2 VOLUME 3, ISSUE 4 Winning towards better care and a cure Moving the fight against colorectal cancer SPRING 2010 SUMMER 2008
The Baker sisters are back in DC this month, joining C3 advocates for this year’s Call-on Congress. They will continue to honor their father’s memory by working with C3 advocates March 15 to 18 to lobby elected officials. For more on Call-on Congress, turn to page 5.
Call-on Congress Inspires and Teaches
Education is a Powerful Tool
By Carlene Canton
Still mourning the death of their beloved father from colon cancer nine months earlier, sisters LaRisha, Marsha and Michell Baker attended C3’s Callon Congress last year not knowing exactly what to expect. They arrived in Washington, DC, knowing only that they wanted to do something to honor their dad’s memory. The C3 training and education they received, along with visits to Capitol Hill, crystallized for them what they could do to fight the disease that claimed their father’s life. While sharing their stories and observing the impact such stories have on others,
they realized how powerful theirs was; that change can come about story by story, step by step. They are not alone. Every year C3 sponsors Call-on Congress to teach continued on page 7
The Baker sisters (from left) Marsha, LaRisha, and Michell called on Congress in 2009 – and came back again this year.
C3 Efforts Pay Off in 15 Million New Research Dollars By Mary M. Miller
The whole C3 team put their shoulders to the wheel, and it paid off big. In December President Obama signed the final Fiscal Year 2010 Defense Appropriations Bill that included adding colorectal cancer to a new $15 million cancer research program. C3 worked closely with key Congressional members for more than a year to convince Congress to fund a new Department of Defense Colorectal Cancer Research Program. For nearly 20 years the Defense Department’s medical research program has directed funds to breast cancer research, with prostate, lung and ovarian cancer research added over the years. But even though
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IN THIS ISSUE
TIME TO “BUTT-IN” .......................................2 Celebrate C3’s fifth birthday by joining in the annual phone campaign. PATIENT-TO-PATIENT TIPS...........................3 Learn how others got through those first days after diagnosis. HEALTH CARE REFORM IS NOT ENOUGH ...............................................4 Make H.R. 1189 a reality in 2010. ADVOCATES GET HEARD ............................5 Every voice makes a difference. Speak up and be counted.
C3 thanks Bristol-Myers Squibb for an unrestricted charitable grant which made this issue of Momentum possible. C3 is solely responsible for newsletter content.
1414 Prince Street, Suite 204, Alexandria, VA 22314 (703) 548-1225 • www.FightColorectalCancer.org
Board of Directors
Nancy Roach, Chair Alan Balch, Ph.D., Vice Chair Steven Depp, Ph.D., Treasurer Robert Erwin, Secretary Carlea Bauman, President Gordon Cole 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 Carolyn Grande, CRNP, AOCNP University of Pennsylvania Axel Grothey, MD Mayo Clinic College of Medicine Heinz-Josef Lenz, MD, FACP University of Southern California John Marshall, MD Georgetown University Medical Center Howard McLeod, PharmD University of North Carolina Neal Meropol, MD University Hospitals Case Medical Center Edith Mitchell, MD Thomas Jefferson University Daniel Sargent, Ph.D. Mayo Clinic College of Medicine Joel Tepper, MD University of North Carolina
FROM THE PRESIDENT’S DESK
For C3’s 5th Birthday, Call Congress on March 30th
By Carlea Bauman President
C3: Colorectal Cancer Coalition is celebrating its 5th birthday this year. The organization was created when a committed group of colorectal cancer activists banded together to change the landscape for people living with this disease. One of the best ways to change the landscape is to get Congress to sit up and take notice that things are not where they should be – and need to be changed. Three years ago we made it a priority to pass legislation that would create a National Colorectal Cancer Screening Program. The goal of such a program is to bring lifesaving screening and treatment to people who otherwise cannot afford it. Every day the C3 Answer Line (1-877427-2111) receives calls from people who are aware that they need to get screened for colorectal cancer and are desperately searching for a way to pay for the screening. We help them the best we can. Thanks to the folks at the Centers for Disease Control and Prevention (CDC) and some charitable hospitals around the country, we know about a patchwork of free or reduced-cost screening programs out there. But the fact of the matter is, right now, if you are uninsured or under-insured and between ages 50 and 64, whether you get screened for colorectal cancer or not depends entirely on where you live. If you are lucky enough to live where the CDC programs are hard at work, we’ve got good news for you. If you don’t, well, that’s a tough conversation to have because we
know that those without insurance get diagnosed at later stages and die sooner than those with insurance. I look forward to the day when a national program exists so that when these calls come in, we can say, “Yes, you can get screened, and yes, you can afford it.” That day will only come if we pass H.R. 1189, The Colorectal Cancer Prevention, Early Detection, and Treatment Act. You can help make that happen. On Tuesday, March 30th, join C3 and the Prevent Cancer Foundation for the Congressional Butt-in – a oneday phone blitz to Congress in support of this legislation. Your call will take less than five minutes. And better yet, it will truly make an impact. Here’s how it works: On Tuesday, March 30, call 866-6153375. Follow the prompts to enter your zip code and you will be directly connected to the offices of your Members of Congress – your two senators and your representative. When you reach their offices simply state your support of the Colorectal Cancer Prevention, Early Detection, and Treatment Act and urge them to vote in favor of the bill. If you would like a detailed phone script, you’ll find one at www. CoverYourButt.org. Urge your friends and family members to join the Butt-In. It’s a simple phone call that can make a world of difference. C3 thanks you for taking part in this effort.
MARCH 30, 2010
RESOURCES LEGISLATIVE BEAT
Patient-to-Patient: Tips for the Newly Diagnosed
In the first days and weeks after a diagnosis of colorectal cancer, the world may feel like it’s spinning out of control. Here are some tips for those who are coping with a new diagnosis from those who’ve been through it:
Steve Depp, a stage IV colon cancer survivor, brings the perspective of a physicist and electrical engineering researcher. A longtime C3 advocate, he serves as Treasurer of the C3 Board of Directors. • Take a deep breath and don’t rush into anything. Spend some time learning about colorectal cancer and your unique case. It’s very unlikely that a delay of a week or so for study and consultation will adversely affect your outcome. • If possible, take time to get a second opinion on your diagnosis, because it defines your options. Because treatments are changing quickly, a general oncologist may not have the very latest information about your specific disease. But he or she should be willing to recommend where to go for a second opinion.
Gordon Cole was a healthy 54 year old when he was diagnosed with stage IV colorectal cancer six years ago. From North Carolina, he is a C3 Board member who is active in fundraising, Call-on Congress, and survival support groups. • Don’t just go online and start Googling your diagnosis. Go to one or two trusted websites, like C3 and the Colon Cancer Alliance or American Cancer Society. After six years at this, that’s still all I need. Start reading some good stories there and get your mind right.
Mortimer Brown was diagnosed 10 years ago, and continues to live a full life, including arranging a “Survivors at Sea” support group which met during a 2009 Holland America cruise. • There are no stupid questions! Both you and your caregiver can—and should—speak up with questions, and to ask for advice. • Join a support group. If you can’t find one, start one. I believe that people involved in support groups live richer, fuller lives. During our recent cruise, five cancer survivors and two caregivers met to talk. We discussed implications of reconstructive surgery—body image, self-esteem, spouse interactions. We talked about genetic testing, whether or not to advise children of results, and much more. At the end of the second session, one person said he had never attended a support group before, but when he got home he was going to look for one.
Keep your own record: dates of visits; names of doctors; and copies of test results.
• For every visit, I go in with my notebook opened up to the page showing my questions for that day. You’re giving a message: I won’t be hurried out of here; I have questions that need to be answered. If you feel they’re trying to rush you, just be polite but be firm. • Right from the beginning, ask for printed copies of your scan, pathology and all lab results. The first time I asked, the doctor looked at me kind of funny, but now the nurse just hands over the reports at the end of my visit.
Cancer center specialists can— and do—coordinate follow-up and more traditional treatments with your community oncologist.
• If possible, consider a “comprehensive cancer center” which offers a multidisciplinary team of medical, surgical and radiation oncologists who specialize in colorectal cancer. The center also may have more sensitive scanning equipment to provide a more detailed picture of possible metastases. Call the C3 Answer Line for a list of comprehensive cancer centers in the US at 877-427-2111.
Join a support group. If you can’t find one, start one. I believe that people involved in support groups live richer, fuller lives.
In the next issue: Tips for Caregivers. Send yours to Tips@FightCRC.org.
C3 Momentum Spring 2010
POLICY & ADVOCACY
Health Care Reform is Not Enough
Make H.R. 1189 a Reality in 2010
By Catherine Knowles
During his State of the Union address in January, President Obama spoke about the importance of moving forward with health reform. While it remains unclear exactly what shape the final health care reform package will take, or when a final bill will be sent to the President, both the Housepassed and the Senate-passed bills include provisions important to the colorectal cancer community. The bills would reduce the cost of preventive services for consumers. Provisions include: • Eliminating cost sharing requirements for preventive services and requiring coverage of these tests by private insurance; Increasing Medicare coverage of preventive services; and In the House version, requiring state Medicaid programs to cover preventive services such as colorectal cancer screening. program was enacted in 1987, only 29 percent of women aged 40 and older reported having a mammogram in the previous two years. Today that screening rate is over 70 percent. Today, approximately 50 percent of insured Americans over age 50 have been screened for colorectal cancer. However, only 15 percent of uninsured Americans have been screened. Colorectal cancer will kill approximately 50,000 Americans in 2010. Sadly, many of those lives could have been saved through screening. program proposed by Representatives Kay Granger (R-TX) and Patrick Kennedy (D-RI) used in H.R. 1189, the Colorectal Cancer Prevention, Early Detection, and Treatment Act. A national colorectal cancer screening and treatment program will save lives by helping all Americans get screened who should be, and treated if needed. One lesson learned from both the CDC demonstration project and the decadesold CDC screening programs for breast and cervical cancer is the importance of including treatment in the program. Thus, if patients are diagnosed during screening, they will receive affordable treatment as they do in the breast and cervical screening program. With enactment of H.R. 1189 to create a national colorectal screening and treatment program, we can save billions in Medicare costs. The national screening and treatment program for breast and cervical cancer has saved thousands of lives. It is time we did the same thing for colorectal cancer.
With enactment of H.R. 1189 to create a national colorectal screening and treatment program, we can save billions in Medicare costs.
2010 could be the year that we stop the unnecessary and tragic loss of life. The expansion of a successful Centers for Disease Control and Prevention (CDC) 5-site demonstration screening program to 22 states and four tribal territories, plus the intense focus on health reform, have set the stage for enactment of a national screening and treatment program. The successful CDC program is the model for a national screening
Lowering the cost of preventive services is just one reason why health reform is important for colorectal cancer patients. And, as important as some of the provisions in the health care reform bills are for the cancer community, we need more than passage of health care reform to win the fight against colorectal cancer. To really propel the colorectal cancer community forward and see a significant increase in populationbased screening rates, we need a national screening and treatment program for colorectal cancer similar to what we currently have in place for breast and cervical cancer. Before the national breast cancer screening
POLICY & ADVOCACY
The Power of Your Voice
By Pam Seijo
Did you ever think your voice would have power on Capitol Hill? That thought never crossed my mind until I became part of the launch of C3 and attended their first advocacy training. That’s when I found the passion and training that changed my cancer journey from patient to advocate. During the C3 training, I was getting more excited, but also more fearful, about facing my senators and my representative. Then a C3 speaker said, “What we have been able to make certain for some, we must make possible for all.” With those words, I knew I could face my members of Congress, speaking for myself and all those who were facing colorectal cancer, and that I could get results. But leaving Capitol Hill the next day, I felt defeated because I hadn’t gotten the immediate support I wanted to hear. At that point I felt my voice had no power and maybe advocacy wasn’t for me. Returning to West Virginia, I sat down to make the courtesy phone calls thanking the Congressmen and staff for their time. The first two calls were easy because I knew I had support from Senator Jay Rockefeller (D) and Representative Nick Rahall (D). But Senator Robert Byrd (D) was a challenge: I didn’t know if I was up for calling his office. However, before leaving his office, I’d made it clear that I was one voice that would be heard all over West Virginia, and that since he was up for re-election the cancer community would be anxious to hear his thoughts on the budget and increased funds we were seeking. So I had to call. And that’s when I found out that my voice did indeed have power during the visit. The staffer explained that although Senator Byrd, as head of the Appropriations Committee, didn’t sign on to specific causes, he wanted me to know that he was definitely all for increasing the colorectal cancer budgets at the National Institutes of Health, National Cancer Institute and the Centers for Disease Control and Prevention. This March will be my seventh year of advocating on Capitol Hill, and I stay in contact with my senators and representative offices in Washington and West Virginia throughout the year. When a meeting is scheduled or I call or email, they know who I am and that it’s about colorectal cancer. So if you think your voice does not make a difference, think again! Every time you call, email, or visit your members of Congress, we are one step closer to making it possible for all. (Pam Seijo is vice chair of C3’s Grassroots Action Committee. You can reach her at Pam.Seijo@FightCRC.org)
Pam Seijo (2nd from right) at C3’s lobby day in March 2006.
C3’s Work Helps Keep Memories Alive
The names listed here are those in whose honor C3 received donations between October 22, 2009, and January 31, 2010. These are individuals whose lives have been affected by colorectal cancer, those fighting cancer now, and those who have lost their courageous battle. These donations keep the fight alive for all of us. To make an honor or memorial donation, contact Ben Basloe at Ben.Basloe@FightCRC.org or 703-548-1225 ext. 17. Thank you.
C3 Momentum Spring 2010
A LIVING LEGACY
Memorial donations in italics.
Matthew Adams • Charles Anderson • Karen Banker • Edna Beaman • Robert Beshore • Agnes Marie Hyde Best • Ted Blau • Arthur Borgeson • Kathleen Brand • Trudy Bridgers • Jeffrey D. Burch • Gloria and Al Chiarieri • Pat Colby • Evelyn Costley • Frances Dew • Lisa Dubow • Robert Elliott • Jeremy Ensey Linda Ference • Niki Ganley • Ryan Gelzleichter • Susan M. Grove • Mary Hannan • Zena Hauser Rose Hausmann • Lori Heflin • David Arnold Henthorn • Herb Hibler • Kenneth Hoffman Julie Jordan • Billy Keane • Ted Kellogg • Robb Kerr • Charlie Kramer • John G. Jenkins • Alan Jennings Uthanna Joseph • Marion Kamche • Christine LeGrant • Samuel Lemacks • Alan Libman • Julie Libman Denise Loughridge • James D. Maughn • Kevin May • Ethel McGuinness • Sandra Merriman Peggy Meyer • Robert Michelson • Ann Marie Miller • Frank Miller • Don Morrison • David Moskal Christine Niemi • Jason Niemi • Fredis Painter • Jan Porterfield • John Ross • Lt. Gen. Martin J. Ryan • Caycee Savage • Sarah Schwartz • Richard Silverman • Judi Sohn • Roman Stadtler Ben Turrieta • William D. Twiss • Alexandra Weiler • Kenneth Weiner • Sharon Weiss • Jana Whitman
C3 Efforts Pay Off in 15 Million New Research Dollars
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colorectal cancer is the second leading cause of cancer death in both men and women, “…federal funding for colorectal cancer research has lagged behind funding for other diseases,” said Congresswoman Kay Granger (R-TX). “I was pleased to support the creation of a …program that will help address this disparity.” Everyone played a role, noted C3 President Carlea Bauman. The C3 staff made sure the request was included and tracked it through the long appropriations process. Advocates at the 2009 Call-on Congress asked their representatives to support the funding. And doctors on C3’s Medical Review Network called Congressional members sitting on the Appropriations Subcommittee. “It made me feel like I was making a difference,” said Dr. Heinz-Josef
Lenz, of the University of Southern California. “Knowing that it worked makes me very proud to be a part of C3, because they’re responsible for making my phone call possible.” “The phone call took just a few minutes and obviously had real impact,” said Dr. Neal Meropol of the University Hospitals Case Medical Center in Ohio, “What a great return on an investment!” Getting the new research funds included by Congress is “a testament to the professionalism and commitment of C3,” said key supporter Congressman Jim Moran (D-VA). The program opens up a new pool of funds for researchers in colorectal cancer, as well as other cancers not previously targeted (e.g. skin, kidney, blood and childhood cancers, genetic research and more).
“As a researcher, I know first hand how difficult it is to secure funding for innovative cancer research,” said Dr. John Marshall, C3 Medical Review Network member and chief of Georgetown University Hospital’s division of hematology/oncology. “The $15 million in funding …will not only help attract new researchers, but it will play an important role in developing new treatments for colorectal cancer.” The new program starts this year, guided by a committee that includes C3’s own founder Nancy Roach (see below). Advocates attending the 2010 Call-on Congress this month will ask Congress to continue funding this important program in future years.
C3 Founder Named to Defense Dept. Panel
“It has long been a dream of mine to get funding through the Department of Defense for colorectal cancer research,” said C3 Founder and Board Chair Nancy Roach. Not only did C3 attain that goal, but Roach has been invited to sit on the panel that will decide the overall vision and first round of grants in the new $15 million program. This month, she will sit down with some of the nation’s top researchers, clinicians, military members and consumers at the first meeting of the Department of Defense’s Integration Panel, assigned to develop a strategy to best address research gaps for colorectal cancer. The panel will review the state of current science, as well as look at the needs of the scientific, military and consumer populations to define priorities and goals for the research funds. Once specific research proposals are received and peer-reviewed for the most meritorious science and impact, the panel will then match funds with the program’s priorities. Awards will be
Place for Advocates at DoD
Consumer advocates are part of the Dept. of Defense review process. If you are interested in learning more, please contact Carlea Bauman, C3 President, at Carlea.Bauman@FightCRC.org so that we can alert you as opportunities arise.
for grants or contracts lasting one to five years. “This marks an important milestone in getting colorectal cancer research on track to receive its fair share of federal resources, and I’m honored to have a role in setting the vision for the program,” Nancy said.
ADVOCATES IN ACTION
‘Education is a Powerful Tool’
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regular citizens how to become powerful lobbyists for the funds and legislation that will save countless families from the pain and heartbreak of colorectal cancer. Along the way another benefit of the event has become clear. Participating with C3 in Call-on Congress can be an amazing, life-altering, and empowering experience for C3 advocates who make the trek to Washington, DC. For the Baker sisters it not only helped them find a way to honor their father’s memory, it changed their lives. LaRisha remembers those first Call-on Congress days. “We were so warmly welcomed by everyone that right from the start we knew we were in good hands.” Her sister Marsha agrees. “Call-on Congress was probably the best grief counseling that I could have received at the time,” she said. “It gave me a focus, a voice, an outlet that provided direction for me to keep fighting in Daddy’s memory.” Gradually over the three-day event, almost without knowing it, the sisters found they were growing stronger, gaining both knowledge and confidence. “Eventually we realized we do have a voice, we can tell our story, and it will make a difference,” LaRisha said. “We never dreamed how this process would impact us. Who knew that we had that much power?”
And they put that newly found power to work. Taking their new knowledge and their new sense of empowerment back to their homes in Portland, Oregon, they started a nonprofit organization in their dad’s name. The Steve Baker Colorectal Cancer Alliance, with Michell Baker as the chief spokesperson, is committed to advocating the importance of education, awareness, early detection and prevention of colorectal cancer through proper screenings. Their message is especially critical to black populations, who have a higher incidence of colorectal cancer, are diagnosed later, and have a higher mortality rate.
The late Steve Baker (in red) surrounded by his loving family.
“Call-on Congress was probably the best grief counseling that I could have received at the time... It gave me a focus, a voice, an outlet that provided direction for me to keep fighting in Daddy’s memory.” Marsha Baker
Steve Baker had a history of intestinal problems. At age 49, doctors performed a sigmoidoscopy to see what could be causing the problems. Colon cancer was never mentioned as a possibility. Steve didn’t ask to receive a colonoscopy that probably would have detected the tumor growing in his colon. Instead, because he was just six months shy of his 50th birthday and colonoscopies weren’t routinely performed on people under the age of 50, he had a sigmoidoscopy that only viewed part of the bowel. That procedure missed the tumor, leaving it to grow for the next six years. When Steve Baker finally had a colonoscopy in 2007, doctors discovered stage IV colorectal cancer which had metastasized to his liver. The tumor was removed but within 10
months they discovered the cancer had spread to his lungs. He died in June 2008 at the age of 56. He is missed by his entire family, including his wife Christy. “That’s way too young for anyone to die,” LaRisha said. “And Daddy didn’t have to die. Everything that was needed to save him was available. We just didn’t know.” That’s why awareness and education are so high on their list of goals for the nonprofit that now bears their dad’s name. That’s why they take great satisfaction in knowing that many family members, friends and acquaintances have scheduled colonoscopies after hearing their story. “We know we are making a difference and we know that Daddy would be proud of us,” LaRisha said. The Baker sisters are quick to acknowledge that C3 gave them the training, the knowledge, the confidence and the inspiration to take the steps on their journey. “C3 taught us that we all have the right to ask questions of people in power and to demand better care for ourselves and our families,” LaRisha said. “Now, we are passing this information on to others. That is how word spreads and change happens. Education is a powerful tool.”
LaRisha Baker and Pam Seijo relax between Hill meetings at the 2009 Callon Congress.
C3 Momentum Spring 2010
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Register to receive future issues of Momentum at www.FightColorectalCancer.org
To make corrections to your contact information or to remove your name from the mailing list, please email info@FightCRC.org or call (703) 548-1225.
Mark the date on your calendar! Tell your friends!
When you reach the offices of your elected officials, simply say: “I urge my Senator/ Representative to support the Colorectal Cancer Prevention, Early Detection and Treatment Act.” Your efforts will help make a National Colorectal Cancer Screening Program a reality.
For a detailed phone script, log on to www.CoverYourButt.org.
MARCH 30, 2010
Who: You! What: Congressional Butt-In When: Tuesday, March 30, 2010 How: Call 1-866-615-3375 to get connected to Congress
Made possible thanks to charitable grants from
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