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4, 3 VOLUME 3, ISSUE 4 Winning towards better care and a cure Moving the fight against colorectal cancer SPRING 2009 SUMMER 2008
Do Your Phone Calls to Congress Make a Difference?
Pick Up the Phone! Join C3 for Butt-in Day
On March 31, join forces with advocates, cancer patients, and friends across the country to make sure Congress hears loud and clear that voters expect them to take a stand and help fight colorectal cancer. On this single day, we “Butt-in” to Congress’ regular business with a flood of phone calls. Last year, C3’s Butt-in campaign generated nearly 2,000 phone calls. This year we can do even more -- if you help. We make it simple: Call 866-6153375, enter your zip code at the prompt, and you’ll be directly connected to the offices of your senators and representative. Once connected, simply give your name and say that you want the senator or representative to support the Colorectal Cancer Prevention, Early Detection, and Treatment Act. The more phone calls each office receives on this day, the more attention to the cause. Invite your friends and families across the country to make calls, too. For more information, check out the C3 website at www.CoverYourButt.org The Butt-in phone campaign runs from 9 am to 5:30 pm EDT on March 31. Join us.
By Carlene Canton
On March 31, C3’s annual Butt-in phone campaign will once again blanket Congressional offices with phone calls urging elected officials to increase funding to fight colorectal cancer. Phone campaigns are tried and true political action tools—but do they really work? People organizing the events know they do, which is why they spend their time encouraging you to spend your time making those calls. For C3’s Director of Policy Joe Arite, who heads up both the Call-on Congress personal visit blitz and the Butt-in phone event, the answer is simple. “Each voting American can and should make their voice heard,” he said. “How else will legislators know how their constituents—especially those who can’t come to Washington—feel about an issue?” But what do organized phone-in events mean to members of Congress, and especially their staffers who actually pick up the phone? Has a phone campaign ever changed a legislator’s mind – or vote? C3 advocate Tracy Patrick knows first hand that the answer to that last question is a resounding “yes!” Tracy and her sister Tina Kiser worked tirelessly last March to convince their
MAR. 31, 2009
elected officials to sponsor legislation helping colorectal cancer patients. Tina had been diagnosed with stage IV colorectal cancer in 2004. Sadly, last year’s Butt-in phone campaign would be her last. Tina passed away in December 2008 at the age of 45. But Tina’s last battle brought a remarkable victory. Thanks largely to Tina’s efforts, Rep. Zack Space (D-OH) received 87 phone calls urging him to support the Colorectal Cancer
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IN THIS ISSUE
FROM THE PRESIDENT’S DESK ........................2 RESOURCES What C3 Has to Offer.....................3 POLICY 2009: Year of the Screening Bill ..4 ADVOCACY Meet an Advocate in Action ........5
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-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 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
On the Hill
Colorectal Cancer Awareness Month: Personal Passion in Action
By Carlea Bauman President
We all know that March is Colorectal Cancer Awareness Month. Did you also know that March is National Caffeine Awareness Month? And National Noodle Month? I’m not making this up. see it on page 7, where Ben Basloe, C3’s new chief fundraiser, actually gets excited about asking people for money, all so that C3 can continue working towards its goals.
Get Your Rear In Gear Action Run 5K Raleigh - March 7 Central TX - March 15 Philadelphia - March 22 www.getyourrearingear.com C3 Call-on Congress Washington, DC March 22-25 www.FightColorectalCancer.org C3 Congressional Butt-in 866-615-3375 March 31 www.CoverYourButt.org Prevent Cancer’s Dialogue for Action in Colorectal Cancer Screening Conference Baltimore, MD April 2 www.preventcancer.org 2
CALENDAR Dusty’s Recipe for
National awareness months are a great At C3, we see Colorectal Cancer way to start a conversation about a Awareness Month as a reason to particular need: Apparently, some of celebrate. Can you imagine ten years us need to be made more aware of ago, cancer patients walking up the the benefits of noodles. But I think steps of the U.S. Capitol with the that national awareness months can words “Cover Your Butt” on their result in change when T-shirts? Or even having passionate advocates a conversation with an National Awareness use the month to focus elected official about months can result on changing their world. colonoscopies? And that’s what this issue in change when Colorectal cancer is all about: personal passionate advocates patients are no longer passion. focus on changing hiding in the shadows, On page 1, get inspired ashamed to call their their world. by sisters Tracy Patrick disease by name. and Tina Kiser and their They are fighting personal passion to convince their back against the disease, and against legislators to change their minds societal pressures to keep quiet about and act on behalf of other colorectal the very thing that threatens their cancer patients. lives and livelihoods. In fact, they are so passionate about the issue On page 5, you’ll read about Marilia that thousands of them are willing Sardinha, C3’s new Grassroots Action to literally wear their cause on their Committee Vice-Chair, and her sleeves, and contact their legislators so personal passion, which she found that laws may change. Despite the fact when she stood on the edge of death that we’ve lost so many loved ones and and fought her way back. You’ll even will continue to do so until screening is widespread and a cure is found, there is much progress to celebrate this March. I hope you will join us. Also, I hope you’ll join us in the Congressional Butt-in on March 31st (see story on page 1) and use your own personal passion to get your friends, family, neighbors and co-workers to call in that day. You just might surprise yourself with how good it makes you feel.
RESOURCES LEGISLATIVE BEAT
C3 Resources: Communication a Top Priority
Communication is key to relationships. Your relationship with C3 is no exception. “We have some of the best resources and most up-to-date information in the field, and we want to make it easy for you to access it,’’ says Carlea Bauman, president of C3. That’s why C3 offers multiple avenues of communicating. We focus on resources that aren’t available elsewhere for those affected by colorectal cancer. Here is an overview of what’s available at C3. If you don’t find what you’re looking for, call the C3 Answer Line (877-4CRC-111).
Visit www.FightColorectalCancer.org to find these resources and more.
Patients and Survivors
If you’re coping with colorectal cancer, your desire for information is probably matched only by your need for facts that are meaningful, up-to-date, and not overwhelming. On the C3 website, the Patient Information section provides facts in layers (under the Awareness & Education heading). Click and read as much as you want and come back for more when you’re ready. You’ll find up-to-date, medically reviewed information on diagnosis and treatment; tips for living with colorectal cancer; ideas for coping emotionally; and ways to deal with the financial stresses that accompany cancer. The free 80-page booklet “Frankly Speaking About Colorectal Cancer” is available by calling the C3 Answer Line (877-4CRC111) or ordering online at www. FightColorectalCancer.org/ FranklySpeaking. For questions about your specific situation, call the C3 Answer Line (877-4CRC-111), or send
C3 Momentum Spring 2009
an email from the website. (Under the Awareness heading, click on C3 Answer Line.) An Answer Line Associate will answer your questions on the spot or do some research and get back to you.
accurately summarize news related to colorectal cancer. The Research section of C3’s website is a timely and reliable resource. C3’s own Kate Murphy is a 26-year colorectal cancer survivor and a long-time patient advocate. She files stories under Research and Treatment News about clinical trials, research findings, FDA warnings, and other news. Readers can comment or pose questions on each article. Every Friday, the “News in Brief” adds short reviews of other research and news with links for more details. The C3 website features an interactive blog with Dr. Heinz-Josef Lenz, Chair of the Gastrointestinal Oncology Program at the University of Southern California and a member of C3’s Medical Review Network. (See From the Desk of Dr. Lenz under Awareness & Education.) He answers questions sent by readers, and writes often about how to get the best quality care (e.g., how to evaluate a surgeon who might perform your colorectal cancer surgery). Sign up to receive their posts via email or RSS at www.FightColorectalCancer. org/subscribe. You can also follow C3 on Twitter at www.Twitter.com/ FightCRC.
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Family and Friends
An informed circle of family and friends can help patients coping with colorectal cancer. The Awareness & Education section on C3’s website has a wealth of advice about helping people help you. There’s information specifically for family or friends who must care for themselves to be able to care for their loved ones. The website also offers links to other reliable resources. Anyone in the extended circle of family, friends, or advocates helping a loved one through colorectal cancer can call the C3 Answer Line for help getting information or connections.
Patients and Practitioners Managing Ongoing Disease
Treatments for colorectal cancer are evolving, so prompt and accurate dissemination of research is crucial. You can rely on C3 to monitor and
POLICY & ADVOCACY
Let’s Make 2009 The Year of the Screening Bill
By Joe Arite
A new era in government is here. Our goal of eliminating barriers to colorectal cancer screening may finally become a reality. Representatives Kay Granger (R-TX) and Patrick Kennedy (D-RI) have reintroduced the Colorectal Cancer Prevention, Early Detection, and Treatment Act and are calling on C3 to mobilize the troops. That is exactly what we are doing with our Call-on Congress and our Congressional Butt-in phone campaign this month.
if everyone aged 50 and older were screened regularly, according to CDC estimates. 1
Not only will this proposed program save lives, but it will save dollars, What the bill will do: too. A preliminary report issued by The Lewin Group, in collaboration This bill will establish a program with the National Colorectal Cancer at the Centers for Disease Control Roundtable, looked at how increased and Prevention (CDC) to provide colorectal cancer screening among colorectal cancer screenings and pre-Medicare eligible individuals treatment for low-income, uninsured, (aged 50-64 years) could translate into and underinsured individuals who are Medicare savings. not yet eligible for Savings occur when Medicare. With this bill, the Medicare colorectal cancer The program is program could translate to is caught early and similar to the National treatment costs are an eleven year savings of Breast and Cervical low. For patients Cancer Prevention, $7 to $21 billion, simply by with metastatic Early Detection, and diagnosing people earlier colorectal cancer, Treatment Program just two months through screening. that has been in of treatment cost place for more than a between $20,000 and decade. This program $30,000. Earlier detection saves both has saved the lives of millions of lives and dollars.2 American women by detecting breast and cervical cancers and following up the diagnosis with treatment. It’s time to do the same for colorectal cancer. Despite the passage of the Balanced Budget Act (BBA) of 1997, which authorized coverage for colorectal cancer screenings for Medicare recipients, too many people still don’t get screened. Yet as many as 60 percent of deaths could be prevented
recruit more than 160 Members of Congress to support this bill. While 160 co-sponsors should have been enough to get the bill passed, Congress ran out of time. We have high hopes that this year will be different and we will see the legislation come to fruition in the 111th Congress. But we still need your help to make that happen! Members of Congress listen carefully to one voice: The voters. That means you and your family, friends, neighbors, and coworkers. We must all get on the phones, or get in those offices and make sure each Member of Congress realizes the importance of this legislation. For more information on how to participate in C3’s Butt-in phone campaign on March 31, see the cover story and Page 8 of this issue of Momentum. For more information about this legislation, check www. FightColorectalCancer.org/ crcscreeningbill.
The report predicts that savings to Medicare will begin in the second year of the program, and could translate into an eleven year savings of $7 to $21 billion. So why is the Colorectal Cancer Prevention, Early Detection, and Treatment Act being “reintroduced”? Last year, during the 110th Congress, C3 and our advocates were able to
The Centers for Disease Control and Prevention (CDC). Underuse of Screening. Website: www.cdc.gov/cancer/colorectal/ statistics/screening_rates.htm Schrag D. The price tag on progress— chemotherapy for colorectal cancer. N Engl J Med. 2004;22;351(4):317-19 www.FightColorectalCancer.org
POLICY & ADVOCACY
Advocates in Action:
Introducing An Inspirational Marilia Sardinha
Meet Marilia Sardinha, a 41-year-old single mom, born in Portugal and now living in a small town in central Maine. She’s a cancer survivor and an amazing advocate. As the new vice-chair of C3’s Grassroots Action Committee, she’ll be writing regularly for Momentum. Marilia’s story and advocacy efforts boggle my mind. But she should tell her own story... --Joe Arite, Director of Policy In January 2004, I started a wrenching physical and emotional journey. Despite having no family history of colon cancer, I found myself with stage IIIb colon cancer at age 36. I had known something was wrong. For 16 months before my diagnosis, I had abdominal cramping and pain. Despite repeated doctor appointments, with diagnoses and treatment for both anemia and an ulcer, my pain got worse. Finally, just days before a scheduled colonoscopy, my pain became unbearable. Doctors in the emergency room decided I had appendicitis and needed surgery. Instead of appendicitis, the surgeon found a three-centimeter tumor in my colon, plus cancer in two of 27 lymph nodes. failure. Trying to save my life, the doctors put me into an induced coma. I went to sleep in January thinking I had appendicitis, and woke up in February with cancer and only one leg. Worst of all, my 12-year-old son saw me leave for the hospital one night, and was told I’d be home the next day. That day turned into a month. He saw me for a few moments during that month, but I don’t remember. My baby boy. My heart. My joy. My life. I survived thanks to a surgeon who fought hard to save my life, and my “mother’s will” to not leave my child. But I had changed from an active, selfemployed single mom to a 90-pound person too weak to walk. I was even too weak to start chemotherapy for several months.
Marilia’s son (left) is her inspiration.
16-year-old son, and I’m engaged to be married. I believe my life purpose is to use these experiences to support and lift and maybe even save someone else. Since my treatment ended, I started an amputee support group; became a certified peer counselor for new amputees; and have supported newly diagnosed colorectal cancer patients in Maine. I testified in support of a Maine law requiring insurance coverage for colorectal cancer screening, which passed and has just taken effect. In March 2007, I became involved with C3 through the Call-on Congress. For the first time, I met colorectal cancer patients and survivors my age. I never imagined that I would be in Washington DC, sharing my story with Congress, but the other advocates inspired me with their strength and passion. Today, I meet regularly with my elected officials and help new advocates understand how to raise their voices effectively. I urge you to become a C3 advocate— not just in March but throughout the year. Respond to action alerts. Spread the word. Together, we are tremendously powerful. I have HOPE…and I am sharing it with you. Join me!
In 2005, I finished cancer treatment and my life began to look up. But in early 2006, tests showed that I had new tumors in my abdomen. Chemotherapy helped, but one tumor kept growing. My best friend, an incredibly smart and persistent advocate, found out about Cyberknife—robotic radiosurgery used for certain cancers. She finally found an Oklahoma surgeon who was willing to try I urge you to become a it on my type of tumor. That was just the first Against my physicians’ C3 advocate—not just step in my journey. To advice and despite this day, I still have in March but through refusal of insurance few memories of the the year. Respond to coverage, the procedure following month. action alerts. Spread the successfully eliminated Right after surgery, I the tumor. However, word. Together, we are developed a serious another small tumor infection throughout tremendously powerful. appeared two months my body and multiple later, so I did another 9 blood clots. I was rushed to another months of FOLFIRI treatment. hospital, but the damage was already Since then, three scans have shown done. My right leg was amputated no evidence of cancer. I celebrated my below the knee. I also needed an aortic 40th birthday—a day I wasn’t supposed stent and an ileostomy. At that point, I to see. I am raising a wonderful, caring was critically ill with acute respiratory
C3 Momentum Spring 2009
Do Your Phone Calls to Congress Make a Difference?
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Prevention, Early Detection, and Treatment Act. Tina reported to her sister that by the end of the day, office staffers were jokingly begging her “not to mention the words ‘Cover Your Butt’ to them ever again.” More importantly, she won Rep. Space’s support. After the Butt-in phone campaign, he signed on as a co-sponsor of the legislation. Even better, he was assigned to the committee that will oversee the new bill in the 111th Congress. Tracy remembers that victorious Buttin day “like it was yesterday.” “Tina was so happy that her efforts made Ohio one of the top states for generating phone calls. She was so proud of her work and the support that she was given. She also took great pride in knowing that she had influenced Zack Space to make a positive choice.’’ Tina successfully accomplished the bottom-line goal of a phone campaign: Calling attention to an issue and getting someone with influence to listen. “If 87 phone calls come in,
Tina Kiser’s “Call-on” Rep. Space (D-OH) made the difference before her death in 2008.
issue, they will do their own research. And yes, staffers agreed, the sheer volume of calls may actually cause the staff (and ultimately the representative or senator) to re-evaluate the facts and their position. That means anything can happen. Tina will be forever remembered for her advocacy and work in raising public awareness of colorectal cancer. Tracy Patrick is determined to continue her sister’s work, bringing public attention to colorectal cancer, instead of it being “a cancer that no one talks about.” In fact, she plans to return to the 2009 C3 Call-on Congress in Washington, DC, March 22nd-25th. Join the cause to get people talking – and listening. Now that you know the difference that your call can make, circle March 31 on your calendar and make a few calls that day. You can make a difference.
they’re likely to at least be curious about what issue is causing people to feel so strongly,” Tracy said. That’s true, according to other congressional staffers we polled about how phone-call campaigns affect their positions and policymaking. Constituent phone calls can be persuasive and can influence a staff person’s position. One piece of practical advice: Short messages work best. If staffers decide to pursue the
C3 Resources: Communication a Top Priority
continued from page 3
Political and Policy Advocates
Both governmental and medical leaders recognize C3 as one of the most reliable, accurate, and effective voices in national and local efforts to fight colorectal cancer. The C3 website’s Policy section is a rich source of practical advocacy tools (see the Advocate’s Toolkit); a review of how government funds colorectal cancer research and how the political machine works; and fact-filled position papers on current legislation (at Where We Stand). For inspiration, read profiles of advocates in action all over the nation (see Advocates at Work).
C3 Policy Director Joe Arite posts legislative and policy news stories regularly on C3 Policy & Advocacy News, and responds to questions posted by readers at the website. Sign up at www.FightColorectalCancer.org/ subscribe. C3’s Action Center (under Policy at the C3 website) helps you make an immediate impact. Today’s top issues pop up, complete with a factual email you can send automatically to your government representatives just by adding your name and zip code. Check it out at http://advocacy.fightcrc.org. Cover Your Butt is C3’s campaign
to ensure that every American receives screening. Find the facts plus action links at C3’s special website www.CoverYourButt.org. These are just some of C3’s resources. Check out the continually updated website. Sign up for email updates at www.FightColorectalCancer.org/ subscribe. And you can always call the C3 Answer Line with any question.
Development Director Ben Basloe Joins C3 Staff
by Carlene Canton
As C3’s new and first Director of Development, Ben Basloe’s job is to reach out to foundations, corporations and individual donors so that C3 can continue its efforts to end colorectal cancer. It’s a challenge he embraces wholeheartedly with passion and enthusiasm. But he is also something of a realist. He understands that these are tough times for fundraising of all kinds. Thanks to the current shrinking economy, nonprofit organizations across the country are stuck between the proverbial rock and the non-too-comfortable hard place. At the same time that foundation grants become more precious and precarious than ever, corporations and individuals tend to take a step or two back as well. One solution, he says, is to go back to the roots: grassroots. The concept that smaller donations spread across larger numbers of donors can make a difference is back in style. “In these difficult economic times, corporations are cutting back on their charitable giving and foundations find themselves with less money to fund their efforts,” he said. “For organizations trying to reach a specific revenue goal, it means they need to look to individual giving and fundraising efforts to supplement other sources of funding.” C3 is fortunate that it has developed a reputation as an effective and efficiently run organization and has always had “a strong tradition of respecting, encouraging and appreciating grassroots funding efforts and events,” he said. “That reputation serves us well whether we’re looking for funds from individuals, corporations or foundations.” “I have every intention of continuing and expanding our relationships with grassroots donors as well as with corC3 Momentum Spring 2009
Ben Basloe is C3’s first Director of Development.
porations and foundations – new and old,” he said. “One of the first steps is to make sure that our message and our mission are out there loud and clear. In tighter economic times it’s essential that donors have crystal-clear understanding about who they are donating to, where the money goes, and what it will accomplish.” Like many people connected to C3, Ben’s path to his new post has both personal as well as professional origins. His journey began with the desire to do something with his life that would honor his father who died of cancer in September 1998.
-- the largest individual fundraiser for the year. He was hooked. He decided fundraising was his career choice as well as a personal mission. He worked four years with the American Diabetes Association and two years as a consultant to nonprofits, a role he mastered while staying at home and sharing the care of his newborn son, Aidan, with his wife Mary. Now Aidan is ready for preschool and Ben is ready to devote his time, experience, and passion to C3. Ben may be a realist but he’s a realist who can dream. And for inspiration he looks to the 2008 presidential campaign where grassroots funding had a stunning impact. “Both candidates showed the value of engaging their supporters and getting large numbers of donors to contribute smaller amounts of money resulting in millions of dollars raised,” he said. “Just imagine the difference that could be made if that amount of money was raised for a nonprofit organization like C3 and used to win the fight against colorectal cancer.”
In tighter economic times it’s essential that donors have crystalclear understanding about who they are donating to, where the money goes, and what it will accomplish.
He participated in an annual walk fundraiser for a cancer organization where he appealed to friends and family as well as hosted a golf tournament with the help of his employer. He raised more than $10,000 for that local chapter
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Mark the date on your calendar! Tell your friends!
On Tuesday, March 31st call 866-615-3375. 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.” You only have to make one call. You will be prompted to enter your zip code, and be directly connected to the offices of your Members of Congress (your two senators and representative). Your efforts could help create a National Colorectal Cancer Screening Program— so urge your friends and family to join in! For a detailed phone script, log on to www.CoverYourButt.org.
Have a mobile phone? Text BUTTIN to 30644 now and we’ll message a reminder right to your phone on butt-in day. A campaign of C3: Colorectal Cancer Coalition. Made possible thanks to charitable grants from
MAR. 31, 2009
Who: You! What: The C3 Congressional Butt-in When: Tuesday, March 31, 2009 Where: By Telephone How: Call 866-615-3375 to get connected to Congress