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Head to the Hill Advocacy Day Draws Hundreds of Brain Tumor Advocates to Capitol Hill

Head to the Hill

Brain tumor advocates in Washington, D.C. speak up for the vital needs of the brain tumor community at the National Brain Tumor Society’s annual event.

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Mass. Advocates meet with Rep. William Keating

National Brain Tumor Society held its annual “Head to the Hill” advocacy day in Washington, D.C during Brain Tumor Awareness Month this past May, 2013. The event drew hundreds of brain tumor advocates from across the country to the nation’s capital to educate their respective congressional delegations on the critical issues currently facing the brain tumor community.

Treatment options for brain tumors remain limited, advancements toward new therapies are underfunded, and the recent sequestration cuts to government-funded research threatens to further undermine the fight against this life-threatening tumor. To make matters worse, the standard chemotherapy for brain tumor patients is often not covered equitably by insurance plans because it comes in a pill form.

Thus, the message delivered to Congress from the brain tumor advocates on the Hill this afternoon was two-fold: Invest in the National Institutes of Health (NIH) and support the Cancer Drug Coverage Parity Act (HR 1801), which will prohibit health insurance plans from charging patients more to access oral chemotherapy drugs, including Temodar, than they would for traditional IV chemotherapy.

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Advocates with Congressman Jim Moran

Cuts to NIH due to sequestration couldn’t come at a worse time for the brain tumor community, which has only seen four (4) FDA-approved treatments in the past three decades.

The deep cuts to NIH triggered through sequestration are expected to result in funding reductions for critical brain tumor research. National Brain Tumor Society and its advocates told their representatives today that it is critical for the federal government to increase NIH funding, so that it may keep pace with the needs of biomedical research.

Temodar (temozolomide) is the standard of care for all brain tumor patients whose treatment includes chemotherapy. Temodar is almost exclusively administered orally, and for this reason health insurance companies often treat it differently. Oral chemotherapy agents are often covered as prescription drugs, rather than a medical benefit, such as traditional intravenous chemotherapy. The result is that patients are often subjected to onerous monthly co-pays in order to access the only chemotherapy available to treat their brain tumor.

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