Brain Tumor Care and Cures Act of 2009: An Advocates’ Plan for Enhancing Brain Tumor Treatments

April 22, 2009

The North American Brain Tumor Coalition seeks to advance the Brain Tumor Care and Cures Act, a draft bill that would authorize programs and activities to improve brain tumor treatments. NABTC advocates include individuals with brain tumors, family members and friends of those diagnosed with brain tumors, caregivers, and physicians, nurses, and basic researchers. The experience of these advocates related to brain tumors is broad and deep, and they relied on this experience in drafting the Brain Tumor Care and Cures Act.

The bill includes initiatives that brain tumor advocates believe will accelerate the development of new brain tumor treatments and improve access to care by brain tumor patients. The brain tumor research task is so great that the bill could have been more detailed and included more provisions, but advocates believe the bill is aggressive and, if enacted, could transform brain tumor research and care.

The bill would: 1) educate the public and policymakers about brain tumors, through a lengthy set of findings about brain tumor, 2) authorize the brain tumor research consortium program, a program that has existed for almost two decades at the National Cancer Institute but is now threatened, 3) establish a brain tumor research coordinating committee to encourage collaboration and communication among intramural and extramural brain tumor researchers, a goal the advocates have long sought, 4) create an innovative therapeutics development effort to encourage public-private collaboration in developing new brain tumor treatments, 5) authorize a conference on centralized brain tumor tissue banks to address obstacles to collaboration related to tissue banks, 6) authorize a neuro-rehabilitation research program to facilitate research on the serious side effects of brain tumors and their treatment, and 7) establish a program for brain tumor survivorship care centers to pioneer new models of care for survivors of brain tumors.

The NABTC is seeking a sponsor of the legislation in the House of Representatives and Senate, and upon introduction of the bill in both Houses will seek cosponsors to lend their support to the bill. Although the Coalition is aware of the obstacles to enactment of a comprehensive bill that has a disease-specific focus, its members believe that the time is now for a more intensive and dedicated brain tumor resarch.

Although there has been incremental progress in the treatment of brain tumors, the five-year survival rate for all brain tumors has not improved significantly in the last 40 years. The NABTC believes the Brain Tumor Care and Cures Act is a step toward faster and sustained progress in brain tumor research.

A copy of the draft bill, Brain Tumor Care and Cures Act of 2009, is attached. brain-tumor-care-and-cures-2009-draft-bill1

Posted in Action Items, Advocacy Positions, Brain Tumor Action Week, Brain Tumor Research