The Preston Robert Tisch Brain Tumor Center at Duke

General Information | Increasing the Reach: National Advocacy and CBTF

By Susan Weiner, Ph.D.

Fifteen years ago, a national advocacy voice of families and survivors for children with brain tumors was lacking. Support services and educational materials for families and children were scarce, pediatric brain tumor research funding for local academic medical centers was thin, and the 50-60 percent survival rate for children with brain tumors had remained nearly constant for twenty years.

Dramatic changes have come about since then. Leadership from past and present Children’s Brain Tumor Foundation (CBTF) board members and staff has helped ensure that the voices of patients, families and survivors are now heard in Congress and in federal agencies responsible for funding research and approving new treatments. In 1991, CBTF helped start a federation of nonprofit brain tumor organizations, the North American Brain Tumor Coalition (NABTC), to do what no one group could do alone. NABTC, which includes organizations that serve adults and children, came together to focus on national issues of common concern to brain tumor patients and their families. As a founding member of NABTC, CBTF has been a powerful national advocacy voice for children and families.

As advocates, we learned the lessons of AIDS and breast cancer advocates—how to lobby Congress and how to draw from our personal experiences to voice the larger concerns of our constituency of patients, families and survivors. As NABTC policy positions and activities grew, CBTF advocates helped shape its annual Brain Tumor Action Week in Washington, speaking at rallies and educational panels. In recent years, CBTF has produced “The Faces of Brain Tumors,” a poignant volume of pictures and stories from patients, survivors and families for NABTC advocates to distribute on Capitol Hill.

Our New York research grant giving and fundraising gave us insights on how important increasing the federal biomedical research budget is to improve the outlook for brain tumor patients. We brought the message of brain tumor patients’ dire need for more rapid treatment progress in testimony before Congress, to the National Cancer Institute (NCI) and the Food and Drug Administration (FDA). Members of CBTF helped craft the groundbreaking National Institutes of Health “Brain Tumor Progress Review Report,” which charted brain tumor research needs over five years. At NCI we have served on advisory panels, as reviewers of grant applications, and as mentors of other advocates. We support the Pediatric Brain Tumor Consortium, and NCI-funded network of 10 children’s hospitals and academic centers dedicated to bringing novel therapies to children with poor prognosis. At the FDA, we have testified, participated in committee hearings and served as reviewers of new treatment strategies.

Our issue advocacy broadened and deepened as we learned the ways of Washington. We advocated for better healthcare for children and families by endorsing insurance coverage for the routine costs of clinical trials and for children’s access to specialty care. We also collaborated with the brain tumor community to ensure congressional passage of a bill to include data on benign (slow growing but damaging) brain tumors in cancer registries for a more complete picture of these difficult disorders.

More recently, CBTF also became a charter member of the Alliance for Childhood Cancer, a coalition of professional and patient advocacy groups focusing on national policies affecting children with cancer and their families. In this forum, we helped bring policymakers’ attention to the palliative and end-of-life care needs of pediatric brain tumor patients, which will receive increasing attention from Alliance members over the next year. While the number of children surviving brain tumors increases, any are left with persistent and sometimes debilitating cognitive late effects of treatment ad disease. As national attention turns to childhood cancer survivors, CBTF advocates will make sure that the special needs of pediatric brain tumor survivors are included.

As we look to the next decade, CBTF will work vigorously to encourage research on pediatric brain tumor treatments that are less toxic and more effective, and new science will yield insights into the mysteries of prevention. As an influential national voice for pediatric brain tumor patients, survivors and their families, CBTF can be proud of its record of vigorous advocacy over these past 15 years, and of the growing number of articulate, responsible advocates in its ranks. If you are interested in participating in national brain tumor advocacy, call the CBTF office at 212.448.9494.

This article was taken from the fall 2003 issue of The Challenge, the newsletter of the Children’s Brain Tumor Foundation, with their permission.

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