[Congressional Record (Bound Edition), Volume 152 (2006), Part 18]
[Extensions of Remarks]
[Pages 23804-23805]
[From the U.S. Government Publishing Office, www.gpo.gov]




           A CALL TO ACTION THE POLITICS OF DISEASE ADVOCACY

                                 ______
                                 

                           HON. RUSH D. HOLT

                             of new jersey

                    in the house of representatives

                       Thursday, December 7, 2006

  Mr. HOLT. Mr. Speaker, I want to bring to my colleagues' attention an 
October 10, 2006 article in the Wall Street Journal by Amy Dockser 
Marcus, entitled ``Advocacy Overload?'' The article reviews the current 
state of disease-funding advocacy, and specifically cites the efforts 
of the Princeton-based Melanoma Research Foundation to coordinate the 
advocacy activities of a wide variety of melanoma organizations. In the 
past year, MRF has worked to organize a coalition of these groups in 
order to develop a coordinated message to Congress and the National 
Institutes of Health. The goal of this ``One Voice'' for melanoma 
research is to develop a common agenda, focused on securing the 
additional resources to fund the research into better treatments and 
cures for melanoma.
  The Melanoma Research Foundation (MRF) was founded 10 years ago and 
has become the leading research foundation for melanoma. The Foundation 
has worked closely with the research and medical communities encourage 
dialogue and education about melanoma through their research 
congresses; participated in National Cancer Institute initiatives; 
organized the first steps of a melanoma coalition for advocacy; and 
hosts an interactive website for patients and caregivers. Their three 
part mission--supporting basic and translational research, education of 
patients and caregivers, and advocating for the melanoma community--is 
funded primarily through community fundraisers across the United States 
organized and managed by MRF volunteers. Other primary sources include 
memorial donations, individual gifts, and unrestricted grants from 
pharmaceuticals.
  The need for a coordinated attack on melanoma is more critical now 
than ever before. Here are some of the facts about melanoma: It's the 
fastest growing cancer currently in the U.S.; It's the most common 
cancer in young adults aged 20 to 30; For women, age 25 to 30, melanoma 
is the primary cause of cancer death; For women, age 30 to 35, it's the 
second leading cause of cancer death, after breast cancer.
  One of the primary causes of melanoma is UV exposure, most of which 
comes from too much time in the sun. Melanoma is survivable, if 
diagnosed early. When a superficial melanoma is found and diagnosed 
early, the 5 year survival rate is 100 percent. But at the opposite 
end, when the melanoma advanced to what's called Stage IV, when it's 
disseminated to major organs, the 5 year survival rate drops as low as 
7 percent. Yet, despite these figures and the growing incidence of 
melanoma, no significant advances in medical therapies (or survival) 
for patients with advanced melanoma has occurred in the past 30 years.
  Clearly, there's a great need for public awareness of the dangers of 
overexposure to the sun. There's also a need for increased research in 
identifying the causes and potential cures for melanoma. Once again, I 
commend the good work of the Melanoma Research Foundation in bringing 
greater public awareness to this disease, and advocating for more 
public and private sector funding for melanoma research.

             [From the Wall Street Journal, Oct. 10, 2006]

                           Advocacy Overload?


 Activists Seek to Unify Efforts Of Groups Targeting Diseases; A Brain-
                          Tumor Collaborative

                        (By Amy Dockser Marcus)

       At the national Brain Tumor Foundation, executive director 
     Rob Tufel has a standard reply for well-meaning families and 
     patients who want to set up a patient-advocacy group: 
     ``Please don't start another organization.''
       There are 141 patient-advocacy groups that cover brain 
     tumors, according to Mr. Tufel, while 43,000 people in the 
     U.S. are diagnosed every year with primary brain tumors, 
     benign or malignant. That's roughly one group for every 305 
     new patients. ``It just doesn't make sense from the point of 
     view of funding, or from the point of view of patients and 
     families,'' who must sort through the numerous organizations 
     and Web sites for information, Mr. Tufel says. ``Competition 
     is good because it keeps us on our toes, but at some point . 
     . . it becomes ineffective.''
       Competition is an issue that many patient-advocacy groups 
     wrestle with as they struggle to raise funds for research, 
     attract greater interest in their diseases, and speed up the 
     search for a cure. Increasingly, advocates are asking: When 
     it comes to a disease like cancer, is it possible to set a 
     common agenda and speak with a unified voice?
       Now some groups have begun to debate whether the large 
     number of organizations may be hindering as much as helping 
     in their efforts. Many diseases--including AIDS, autism and 
     Parkinson's disease--have more than one group that lobbies 
     Congress for more funding and reaches out to patients and 
     families. With cancer, in particular, there has been an 
     explosion in the number of foundations and advocacy groups in 
     recent years, as the Internet allows patients to connect with 
     one another more easily. It's particularly true in rarer 
     cancers such as brain tumors or melanoma, where the ratio of 
     the number of groups to the number of people who actually get 
     the disease is especially high. There are an estimated 40 
     groups in the U.S. for melanoma--a disease that will see 
     about 62,190 new cases and 7,910 deaths in 2006, according to 
     the American Cancer Society.
       Many of these groups wind up competing with each other for 
     the same donors and the same researchers to sit on their 
     boards. There is the chance that groups will duplicate one 
     another's efforts, wasting resources by offering the same 
     programming or services. And busy legislators find themselves 
     uncertain about what the greatest need is for patients 
     because each group emphasizes different issues or aspects of 
     the disease.
       There is also recognition that as cancer research 
     increasingly focuses on using costly, cutting-edge technology 
     to identify genes and cellular changes as an avenue to new 
     treatments, progress is going to take huge sums of money that 
     small patient-advocacy groups are unlikely to be able to 
     raise on their own.
       Advocacy groups need to ask, ``Couldn't we better leverage 
     some of these resources that you're all spending?'' says 
     Paula Kim, whose Translating Research Across Communities 
     consulting group in Green Cove Springs, Fla., and Fallbrook, 
     Calif., works with patient advocates. Many times, groups end 
     up ``recreating the wheel'' in doing very similar work, she 
     says.
       Different strategies are being tried in order to organize 
     the patient-advocacy community. Some advocacy groups for 
     major cancers, such as breast cancer and prostate cancer, 
     have formed coalitions that have been effective in lobbying 
     on common issues. Others end up merging; two separate 
     lymphoma patient-advocacy groups decided to join forces and 
     create one organization instead, the Lymphoma Research 
     Foundation. ``One Voice Against Cancer'' is a coalition of 
     many public health groups that lobbies Congress for more 
     federal funding for cancer research. Eight brain-tumor 
     foundations, including Mr. Tufel's group in San Francisco, 
     formed the Brain Tumor Funders' Collaborative to pool money 
     to fund large projects. Earlier this year, they announced 
     their first joint funding initiative, giving grants of $2 
     million to each of three scientific projects.
       Not all smaller groups see the proliferation of foundations 
     as a problem that needs fixing. Many advocates started their 
     work because they lost someone to the disease, and want to 
     focus on highly personal goals or local projects. Small 
     groups also sometimes worry about having to divert too much 
     of their meager funds to big projects. ``I don't agree with 
     the idea that there are too many melanoma groups,'' says 
     Colette Coyne, who founded the Colette Coyne Melanoma 
     Awareness Campaign in New York with her husband, Patrick, 
     after their daughter died of melanoma. ``Many work in their 
     community. I think it is a healing thing for people to create 
     a foundation when they have lost someone.''
       The Coynes concentrate their efforts in New York, where 
     they live. They have helped promote shade coverings in 
     playgrounds and helped push through tough legislation 
     regarding the use of tanning salons by minors. But they rely 
     mainly on volunteers and raise around $50,000 through a 
     yearly walk and dinner dance. ``I'd be concerned about being 
     committed to large amounts of money for a coalition when 
     we're never very sure what our income will be,'' says Ms. 
     Coyne. Nonetheless, Ms. Coyne says she believes a coalition 
     is necessary, and she wants to find a way for her group to 
     join.
       It is within the melanoma community that one of the most 
     interesting and important debates is going on regarding 
     advocacy groups, amid growing attention to the disease. 
     Steven A. Rosenberg recently announced that he and other 
     National Cancer Institute scientists genetically engineered 
     advanced melanoma patients' own white cells to recognize and 
     attack their cancer cells. In a report published about 15 of 
     the patients, two of the patients saw their disease regress. 
     Translational Genomics Research Institute in Phoenix and the 
     H. Lee Moffitt Cancer Center and Research Institute in Tampa, 
     Fla., are working together to create a kind of map of the 
     human melanoma genome for researchers. These are the kinds of 
     projects that a coalition of melanoma advocacy groups could 
     help by lobbying for more federal funding and generating 
     greater public awareness about the projects and the need for 
     support.
       Nineteen different melanoma groups came together in 
     Bethesda, Md., in late March for a meeting planned by the 
     Melanoma Research Foundation in order to debate whether they 
     should form a ``One Voice Melanoma'' coalition to increase 
     the impact of the community on a federal level. At the 
     melanoma coalition meeting, one of the key

[[Page 23805]]

     speakers was Connie Mack, who was the U.S. senator from 
     Florida from 1989-2001, and is a melanoma survivor. Sen. 
     Mack, who now serves as chairman of the board of the Moffitt 
     center, told the patient representatives that their 
     organizations could do much more, especially on Capitol Hill, 
     if they joined together. ``Our challenge is to see that our 
     voice is heard,'' he told the advocates, ``but the only way 
     that this will occur is if we speak with one voice.''
       In an interview later, Sen. Mack said that the individual 
     organizations were all doing important work, but that members 
     of Congress and officials at the NCI were constantly meeting 
     with patient advocates, including melanoma groups with 
     different ideas and requests. Congress has limited resources 
     available to give these groups, says Sen. Mack, and without a 
     common agenda, ``funding levels haven't achieved the level 
     where they can accomplish anything of significance.''
       Linda Pilkington, a melanoma survivor who is executive 
     director of the Melanoma Research Foundation in Princeton, 
     N.J., says that the coalition talks had already made a 
     difference. In the wake of the meeting, the groups agreed on 
     some common goals. While discussion about the coalition's 
     structure and mission continue, as a result of the group's 
     discussion, the Melanoma Research Foundation was able to work 
     with a lobbyist and Ms. Kim to craft language that was 
     included in the current Senate Labor, Health and Human 
     Services, and Education appropriations report for fiscal 
     2007. It calls on the National Cancer Institute to convene a 
     group of patients and researchers to develop a five-year 
     strategic plan for melanoma research, including focusing on 
     the issue of how to speed up the development of new 
     therapies.
       The effort hasn't been easy. ``Putting groups together is 
     like having your children work together,'' says Valerie 
     Guild, president of the Charlie Guild Melanoma Foundation in 
     Richmond, Calf., and part of the steering committee working 
     on the melanoma coalition. It seems to make sense because 
     they're all siblings, ``but try to get someone to decide what 
     movie to go to on a Sunday night.'' Despite the challenges, a 
     coalition can work, says Ms. Guild, who started her group in 
     2004 after her daughter died of melanoma. ``Everybody really 
     wants to get to the same place at the end of it all--a 
     treatment for the disease.''
       Ms. Kim, the consultant, who is helping the melanoma groups 
     create a coalition, says there are a number of models that 
     can help small or financially strapped organizations 
     contribute to a coalition. Among them: sliding-scale dues 
     based on the size of a group's budget, or a program for 
     helping coalition members raise additional funds. Ms. Kim--
     who herself co-founded an advocacy group called the 
     Pancreatic Cancer Action Network in 1999 after her father 
     died of pancreatic cancer--argues that ``for rare diseases, 
     coalitions are vital. It's a lot harder to make noise when 
     there are not a lot of people to advocate for you. It's 
     harder to get people on the bandwagon.''

                          ____________________