Advocacy Overload? Activists Seek to Unify Efforts of Groups Targeting Diseases; A Brain-Tumor Collaborative

By AMY DOCKSER MARCUS Page D1

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 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 was the 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."

Write to Amy Dockser Marcus at [email protected]