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What's Your Story?
Tell It During the Holidays and Advance Quality Cancer Care for Survivors Nationwide
Everyone diagnosed with cancer has a story to tell. Many of us know people who received their diagnosis just before becoming parents; people who were training for a marathon or finishing college; people who just started a new job. Everyone who has had cancer remembers what was happening when they were diagnosed.
What we want to know is: what happened next? What was your treatment experience? How were your side-effects addressed? When you completed treatment, what kind of follow-up plan did you receive for your care? How are you doing now?
Legislation that would improve cancer care is gaining momentum in the U.S. House of Representatives, presenting a timely opportunity for cancer survivors to share their stories both success and challenges of treatment, follow-up and life as a survivor. H.R. 1078, The Comprehensive Cancer Care Improvement Act (CCCIA), would lead to cancer patients receiving written care plans before treatment begins, treatment summaries when treatment is finished, and written care plans to guide follow-up care that is needed
Read more about H.R. 1078.
Written care plans can help improve communication between you and your physician and allow you to participate more fully in decisions related to your care, including not just your cancer treatment and its side effects, but also your social and emotional needs. Treatment summaries and follow-up care plans can help you receive appropriate and coordinated care throughout your life as a survivor.
The CCCIA now has 85 sponsors, a respectable achievement for any legislation. But it needs far more sponsors to be considered by a Congressional Committee. And that’s where you come in. Will you tell us your story of treatment and survival? Your Representatives in Congress need to understand how this proposal can improve the quality of care and quality of life for millions of people just like you. Our online form will bring you to a few simple questions to guide you through the process of telling your story. Your story will only be used with your express permission.
And remember holiday time is a great time to find your Members of Congress at home in the District! Follow this link to read more about how you can tell your story directly to your Representative or Senator during this holiday season.
Don’t Be Afraid to Pick up the Phone
Cancer Survivor and Advocate says “Ideas make a difference”
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Advocate Suzanne Lindley visits Senator Kay Bailey Hutchison |
In an interview March 16, 2006 on Health Talk Radio Suzanne Lindley, nine year colon cancer survivor said about her cancer journey, “Never ever give up. A lot of people call it a roller coaster ride. There are always lots of dips and turns, and sometimes it moves faster, sometimes slower. And you just want to keep the roller coaster going. As long as it doesn’t stop, the ride is good.”
This upbeat, fast talking Texan is today a highly effective advocate for living long, being outspoken about cancer, and helping buddies along the way. Lindley was diagnosed September 17, 1998 and her experiences with myriads of doctors, clinics, and treatments have made her an expert at self-advocacy. She was told that she had only a few months to live and was sent home to get her affairs in order. Once home she searched the internet and sent a plea to an online listserv for others who had colorectal cancer. She caught the attention of Shelly Weiler who was going through the same experience and he told her that there were treatment options out there and not to give up. He threw her a lifeline of hope and encouraged her to research all the possibilities for treatment. Lindley took his advice, found an oncologist who recommended options, and she changed the course of her fate. Right then and there she became a fierce advocate -- for herself, then for others -- and now, in Washington, D.C.. She refers to Shelly as her guardian angel who encouraged her to take a proactive approach to her own treatment. Reaching out to others who suffered from the same illness, Lindley learned the power of speaking your mind and getting yourself heard.
Although she was a natural at advocating for herself, speaking with policymakers and celebrities was a totally new ballgame for her, and she admits being nervous at the beginning. But now she speaks with authority, “Don’t be afraid to pick up the phone. Ideas make a difference.” Being a cancer survivor and volunteering with Colon Cancer Support landed her on the Today show two years ago where Katie Couric called her a “Medical Matchmaker” because of her belief in the buddy system while fighting this disease. She has established a network of over 200 people who reach out to each other sharing survivor stories and wisdom. This positive reinforcement has led Lindley to learn how to approach our lawmakers. She went to a training session in DC led by One Voice Against Cancer (OVAC). There she got instructions on how to contact her legislators. Along with two other Texans who attended the meeting she made plans to contact the Texas legislators. Once they met with Representative Jeb Hensarling, Lindley was so inspired with confidence and with the enormity of her mission that she has become hooked on speaking with everyone she can to improve cancer care in the US. She has met with countless members of Congress, not just the ones from Texas. She has had a private tour of the West Wing of the White House and had the opportunity to speak with Vice-President Cheney on the importance of quality cancer care. She tells anyone who asks that just walking through Congress inspires her and impresses her with her own power and the enormity of her mission.
Lindley gives wise advice. Start small. Reach out to a buddy, someone going through the same thing. Support and advise each other. Then, align with an organization to learn how to advocate for all cancer survivors. She is a huge proponent of the NCCS training program and claims that there is not a better one out there. Train with them. Learn what kinds of things to leave behind that will prompt the legislator and staff to remember you and the points you made. Then, call, email, contact the staff. Make sure your voice is heard. In a recent conversation, she recalls the encouragement she received that really struck home, “You can’t do anything wrong and you can make an impact.”
Lindley wrote recently, “I’ve done things that I would never have attempted without cancer (including sky diving and scuba diving)—lobbying with C3: Colorectal Cancer Coalition and on behalf of SIR-spheres, speaking, meeting new people and telling a very private story in extremely public places. My life has touched others as they have touched mine and increased my understanding of hope. Hope is a guiding force in life and is the closest thing to a magic wand.” Lindley has dedicated herself to assuring that others have access to the type of care that will allow them to have this same kind of hope.
Centers for Disease Control & Prevention (CDC) Awards $1.3 million to National Coalition For Cancer Survivorship (NCCS)
The CDC has awarded more than $1.3 million to NCCS to fund a five year project based on NCCS’s award-winning Cancer Survival Toolbox® (CST) audio program that will provide treatment information and self-advocacy skills to people diagnosed with multiple myeloma, adult leukemia, and non-Hodgkins lymphoma in African American, Latino, and Native American populations. The project, “Hematologic Cancers Strategies for Education and Outreach,” began September 1, 2007 and runs through August 31, 2012.
“The NCCS proposal addressed two very important areas for the CDC,” said Dr. Carol Friedman, Chief of the Comprehensive Cancer Control Branch within the CDC’s Division of Cancer Prevention and Control, “The types of cancers to be studied as well as the needs of the underserved minority populations in relation to information sharing are high on the priority list of the CDC.”
NCCS will supplement its highly acclaimed CST with specific audio programs targeted to individuals with the three previously mentioned hematologic cancers and will also develop a fourth module for patients considering a bone marrow transplant, a specific treatment option for hematological cancers. Almost 10 years old, the CST is a collaboration among NCCS and the leading professional societies representing oncology nurses and social workers. The program focuses on providing survivors with self-advocacy skills that form a foundation for individuals diagnosed with cancer to use at any stage of their cancer experience. It is made available at no charge to anyone.
Incidence rates for blood cancers are higher in African-Americans, Latinos, and Native Americans populations. As part of its project scope, NCCS will also interview individuals and groups representing these three diverse groups to understand how healthcare support organizations can best adapt their information, education, and outreach activities to be most effective with individuals in these specific populations. A key project goal is to design successful dissemination paths to reaching these individuals at the beginning of their experience with cancer with specific treatment information and skills for navigating their healthcare options.
“ We are pleased that NCCS will aid us in making this type of information more accessible to the people who need it,” Friedman added. In 2004 Congress encouraged the CDC to support the development of interactive, Web-based education for health care providers on the signs and symptoms of hematological cancers as well as to provide information about current treatment options.
“This project presents an ideal opportunity to expand on the success of the Cancer Survival Toolbox by developing it further and offering it to targeted populations where needs are more acute,” said Ellen Stovall, NCCS President and CEO and principal investigator on the grant.
Led By Survivors
Joseph W. Waz Jr., Board of Trustees Vice Chair
 Joe Waz and his wife were eagerly anticipating their first child when he was diagnosed with bladder cancer in his mid-thirties. His oncologist, Dr. Jim Ahlgren of Lombardi Cancer Center in Washington, D.C., attacked the tumor aggressively with a pre- and post-operative chemo regimen that had not even existed six months earlier. Nineteen years later, Waz has watched his son grow into a young man, and Waz has built a noteworthy career in the communications field. As Corporate Vice President of External Affairs and Public Policy Counsel for Comcast Corporation in Philadelphia, Waz is responsible for the company’s public policy activities, political action committees, and charitable programs.
Waz knows communications, he knows Washington, D.C., and he is adamant about the importance of ensuring quality cancer care. “Nothing is more important than telling your own survivor story to your own legislative representative to make the case for good public policy,” he says. He has seen this on countless trips to Capitol Hill. Before joining Comcast in 1994, Waz worked at the Wexler Group, a government relations and public affairs consulting firm in Washington, D.C. Working in the communications field, he met and formed a friendship with Robert Sachs, a fellow cancer survivor, communications industry leader, and current chair of the NCCS Board. Sachs enlisted Waz to become a member of the NCCS Board. Waz was attracted to NCCS because the organization not only makes a difference on a personal level with cancer survivors, but it also works on a broader level by advising public policymakers on issues that aim to help all cancer patients nationwide.
Interestingly, Waz has not always spoken out about his survivorship story. He did not become an active advocate until several years after he became cancer free. Yet, he says that having had a number of complications during and after treatment and personally knowing the difficulty of care coordination has revealed for him the importance of active advocacy.
He is definitive in his belief, “My story helps build (support). The power of grassroots advocacy moves legislation. This type of support is what makes things happen.” He explains that members of Congress are there to serve their constituent’s needs. “It’s their main job and it is why they return home so frequently and hold town hall meetings. They want to take the pulse of their constituents. When a Congressperson receives ten to thirty letters, emails, and visits, they then turn to the staffers to know more and to search for the answers. The issues that stand out are the ones that get responded to. The best members of Congress are the ones who have good records for constituent service in all areas. Every single member of the NCCS network needs to make sure his or her member of Congress has the opportunity to learn about our legislative initiatives.”
NCCS has an effective, credible voice and we all must work to build the political force to support public policy that ensures quality cancer care. Waz has considerable experience in moving legislation, but he cautions others, “It may take a while but never lose heart.”
His advice: Be patient and persistent. Two things cancer survivors already know how to do very well.
We’ve Updated Our Website for You!
 Over the past several months, NCCS has been working to create a new website to help you find the information you need and take part in the survivorship movement. We surveyed website visitors and members of our Cancer Advocacy Now!™ network to identify what matters most to you. The result is our recently launched new website that provides an interactive environment where you can learn about NCCS, find resources, get involved, and connect with others in the following ways:
Survivor Profiles
Read about how others have spoken up for themselves in their own healthcare, on behalf of others, or at the federal level by contacting their Congresspersons. You can also share your experience by submitting your story or commenting on someone else’s Survivor Profile.
NCCS News Updates
You told us that you were interested in receiving news and reports, so we’ve created a section of our website to keep you informed. We’ll provide you a link to these items as well as a section for you to read others’ comments and leave your own.
Interactive Resource Guide
We have always had a comprehensive resource guide to help you find what you need - now it’s even better! You can easily search for specific resources based on cancer type, cancer-related information, and essential care (treatment issues).
Get Involved
Being an advocate means different things to different people. Check out our Get Involved section to learn more about advocacy, take our free online training, and sign up to join a network of survivors, their caregivers and loved ones, and healthcare professionals who are speaking up for better cancer care.
Easier Donation Form
An easy way to support our mission is to give a donation using our secure online donation form. Your donation will help the effort to change the way the nation researches, regulates, finances, and delivers quality cancer care.
Ellen Stovall's Transition to New Role with NCCS
 People involved with cancer, whether it be research, quality care, or policy development, know the name of Ellen Stovall. She has been a cancer survivor for 36 years, and for most of those years, she has worked to bring attention to the physical, psychological, financial, and emotional needs of millions of cancer survivors and their families throughout the United States. When hearing her speak about dealing with the toll cancer takes on patients and caregivers, listeners resonate with the conviction behind her words and are inspired to be a part of the survivorship movement.
Stovall has been President and CEO of the National Coalition For Cancer Survivorship since 1992 and will be stepping down from that position by the end of 2008, during which time the organization will choose a new CEO. She will continue with NCCS by focusing her time on public policy development, survivorship issues as they relate to quality improvement in cancer care, and as Principal Investigator for five-year grant NCCS received from the Centers for Disease Control and Prevention (CDC).
“I am very appreciative for the opportunity to continue developing a quality cancer care agenda and to represent NCCS in those endeavors on behalf of this country’s more than ten million cancer survivors,” says Stovall.
Stovall has led NCCS for seventeen years and served as Vice-President of the NCCS Board for three years prior to becoming its Chief Executive It has been a time of significant growth and change for the organization. Under her direction, NCCS led the effort to establish the Office of Cancer Survivorship at the National Cancer Institute. In 1998 NCCS co-convened “THE MARCH- Coming together to Conquer Cancer” which turned out to be a pivotal event, eliciting support and doubling of funding for the National Institutes of Health and the National Cancer Institute. Stovall also served as Vice-Chair of the Institute of Medicine’s (IOM) National Cancer Policy Board and co-edited their report, From Cancer Patient to Cancer Survivor: Lost in Transition. In 1993, Stovall was instrumental in forming the Cancer Leadership Council (CLC), an independent forum of thirty-three national organizations representing most of the country’s leading cancer research, treatment, support, and advocacy organizations. Currently, and for the foreseeable future, she is actively engaged in an effort to gain passage of the Comprehensive Cancer Care Improvement Act, introduced by Rep. Lois Capps (D-CA) and Rep. Tom Davis (R-VA) with 85 sponsors to-date.
This long record of advocacy serves as a model for members of NCCS’s Cancer Advocacy Now! network. Stovall has learned through personal experience the value of cancer advocacy and she is committed to keeping cancer survivorship and quality cancer care issues in the thoughts and actions of our policy makers and the general public. .
Event Highlights
Frosted Pink
NCCS joined three other cancer advocacy organizations as partners in the nationally televised Frosted Pink program to raise awareness of women's cancers and inspire action. It was an inspiring night both because of the musical and athletic performances and because of the potential to reach so many people on the importance of taking action to achieve quality cancer care.
The 2-hour program was broadcast on ABC on October 14th and featured Olympic skaters Sasha Cohen, Kristi Yamaguchi, Nancy Kerrigan; celebrities Billy Baldwin (Dirty Sexy Money), Brenda Strong (Desperate Housewives), Marg Helgenberger (CSI: Crime Scene Investigation); and musicians Rascal Flatts, Natalie Cole, Joss Stone and Babyface Edmonds. The show was also rebroadcast several times on the Style television network.
Cancer survivor and Texas-based advocate Suzanne Lindley won tickets to attend by being the person who referred the most new members to NCCS’s Cancer Advocacy Now! network (http://www.canceradvocacy.org/get-involved/) in the month of September. Suzanne brought her husband, Ronnie, and their 17 year-old daughter, Karlie, to Los Angeles to attend the taping on October 6th.
“There wasn't a person there unaffected by the disease, and it was evident in every single performance and in the eyes of those watching,” Suzanne said. “I thought of the NCCS Toolbox® and how many people it assists and am proud to know that I am part of such a strong community.”
Golf Tournament
On Monday, October 1, 2007 NCCS hosted the 3rd Annual Survivor Golf Classic at the Reynolds Plantation in Greensboro, Ga. to raise funds supporting NCCS’s advocacy work on behalf of cancer survivors. The event featured Atlanta’s fun-loving, “rock’n and roll’n” music artists Banks & Shane, who performed at a reception the evening before the tournament. The tournament celebrated cancer survivorship by honoring four youth survivors participating from Camp Sunshine, an organization founded in 1982 as a summer camp for children with cancer and which now provides year round activities for youth cancer survivors and their families. Sixteen foursomes and the corporate sponsors enjoyed a round of golf and intimate dinner at the Ritz Carlton. Thank you to the Georgia Society of Clinical Oncology and King Pharmaceuticals for their sponsorship and to Bayer HealthCare for their Title Sponsorship of this important opportunity to raise awareness of the issues surrounding cancer survivorship.
Upcoming Events
LOVE CYCLING, BEING OUTDOORS, AND HELPING CANCER SURVIVORS?
Volunteer to help NCCS at Amgen’s Tour of California cycling event
NCCS needs volunteers in several northern California cities to help staff the NCCS information booth at Amgen’s Tour of California between February 17th and 24th. Get up close to the professional cyclists who compete in this 600-mile, multi-city race by volunteering at the finish lines!
If you live near Palo Alto, Sausalito, Santa Rosa, Sacramento, San Jose, Seaside, San Luis Obispo, Solvang, Santa Clarita or Pasadena and would like to help out, please contact Anne Willis at awillis@canceradvocacy.org. Volunteers will be rewarded with passes to the VIP tent and Tour of California mementos. Visit www.amgentourofcalifornia.com to find out more about the race.
YOU CAN ALSO HELP BY TELLING YOUR STORY!
Individuals with cancer and a compelling story to tell can be featured in the northern California news media during the Tour of California in February. If you would like to be featured on radio, television or in the newspaper, please contact jheard@canceradvocacy.org. Provide some information in your email, such as where you live, when you were diagnosed and what part of your story you would like to share.
CYCLE FOR CANCER CAUSES IN THE BREAKAWAY FROM CANCER RIDE
 On Sunday, February 10, 2008 join 11-time Tour de France veteran George Hincapie for the 2008 Breakaway from Cancer fundraising ride in Palo Alto, CA. The 25-mile Breakaway from Cancer charity ride is sponsored by Amgen as a complement to its multi-city Tour of California professional cycling race. Breakaway benefits non-profit partners The Wellness Community and the National Coalition for Cancer Survivorship. Participants are required to raise a minimum of $150 and will receive a custom Breakaway From Cancer cycling jersey. Funds raised go to the non-profit partners to support free services and programs that help people living with cancer.
For more information, tips on fundraising for the event and to register for the ride, please visit http://www.breakawayfromcancer.com/. Register now to secure your spot!
 NCCS Gala Save the DATE
2008 Rays of Hope Gala
Wednesday, May 7, 2008
6:00 Cocktails 7:00 Dinner and Award presentations
Mellon Auditorium Washington, DC
For more information: Call Dufour & Co. LLC at 202-298-8650 or email NCCS@dufourandco.com
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