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National Brain Tumor Society

June 2013 Public Policy Update: A Storm of Brain Tumor Advocacy

  • NBTS Advocates for FDA’s Help to Create a Faster, More Attractive Pathway for Brain Tumor Drug Approvals
  • Action Needed to Support NIH Funding
  • Oral Chemo Parity Picking Up Support
  • Keeping Kids in Focus: NBTS Participates in the Alliance for Childhood Cancer’s Advocacy Action Day
  • Advocates of the Month Richard and Sandy Perkins

NBTS Advocates for FDA’s Help to Create a Faster, More Attractive Pathway for Brain Tumor Drug Approvals

Brain tumor patients surely want to live longer, but they also want to live better.  The paucity of potential brain tumor therapies in the pharmaceutical drug pipeline, including those aimed at both of these goals, is one of the most significant problems facing our community. While we surely need the pharmaceutical industry to invest more heavily in brain tumor therapies, we also need the FDA to do its part to create a favorable climate for companies to make that investment. In early June, NBTS, as part of its Clinical Trial Endpoints Initiative, met with top officials in drug development at the Food and Drug Administration about the challenges facing brain tumor drug approvals. FDA staff was enthusiastic about working with NBTS to help move the brain tumor field forward and agreed to participate in a workshop to address key challenges in clinical trials and criteria that drug approvals are based upon. Over the next year, NBTS will bring together key stakeholders in drug development to envision a clearer, faster and more attractive pathway for brain tumor clinical trials to ensure drugs are safe and effective, and then reach patients.  As always, we will keep you posted on the next steps with this exciting public policy advancement. 

Action Needed to Support NIH Funding

Right now, Members of Congress are setting priorities for the 2014 federal budget and the brain tumor community needs to weigh in during this process. Take action now - write today. National Brain Tumor Society remains concerned about the outlook for the largest funder of brain tumor research in the country, the National Institutes of Health (NIH). The House budget proposal includes a $1.6 billion cut to NIH funding, which was put in place by sequestration, and calls for further cuts to make up monetary deficits in other areas of the budget. The Senate version does not account for sequestration and starts at a larger number when considering next year’s allocation. In either case, there are difficult decisions to be made and our voices are critical to supporting NIH in this process. Will you tell your story to Congress about why brain tumor research is important to you? 

Oral Chemo Parity Picking Up Support

As you know, the oral chemotherapy parity legislation was reintroduced in the House of Representatives in April. HR 1801, the Cancer Drug Coverage Parity Act of 2013, would require insurance plans that cover chemotherapy to apply equal cost-sharing across all delivery methods including intravenous, oral, and self-injectable. This issue is particularly important for the brain tumor community, as the standard of care treatment for many brain tumor types is an oral chemotherapy called temozolomide, or Temodar. We know that many brain tumor patients are being forced to pay hundreds, sometimes thousands of dollars per month out of pocket to access their life-saving treatment.

Since its reintroduction, HR 1801 has picked up 42 cosponsors in the House. Several cosponsors signed on as a direct result of their meetings with brain tumor advocates during our annual advocacy day, Head to the Hill. This is a strong start, but we will need the support of many more offices in order to move this legislation forward. Please watch for upcoming advocacy opportunities to ensure affordable access to chemotherapy for brain tumor patients.

Keeping Kids in Focus: NBTS Participates in the Alliance for Childhood Cancer’s Advocacy Action Day

Along with over 20 other national, regional and local nonprofit organizations representing a wide variety of cancer patient causes, the National Brain Tumor Society went to Capitol Hill on June 18 as part of the Alliance for Childhood Cancer’s advocacy action day to educate Congress about ways it can help pediatric cancer patients, including those with brain tumors.  As you know, brain tumors are the second leading cause of cancer death in children under 20. The legislation the Alliance urged Congress to support include: increased appropriations for the National Institutes for Health, re-authorization of the Caroline Price Walker Conquer Childhood Cancer Act (funds cancer registries and biospecimen repositories), and the passage of the Childhood Cancer Survivors’ Quality of Life Act that would, among other provisions, strengthen research and workforce development focused on the psychosocial care for childhood cancer survivors. National Brain Tumor Society is in its first year as a member of the Alliance. Through it we are an even stronger voice for our pediatric community. 

June 2013 Advocates of the Month Richard and Sandy Perkins

This month, we’d like to introduce you to Richard and Sandy Perkins of Arizona. Richard and Sandy are fiercely committed to advocating for the brain tumor community traveling around the state of Arizona and all the way to Washington, DC to share their story and support public policies that strengthen research, advance therapies, and improve health care.  Richard and Sandy joined us in 2012 for Head to the Hill, ensuring that the DC staff of the Arizona delegation learned about the needs of the brain tumor community. But they didn’t stop there. In August, Richard traveled around the state of Arizona with a group of other Arizona advocates, visiting the district offices of every Member of Congress from Arizona to talk about the importance of funding brain tumor research and ensuring affordable access to treatments. This year, after returning to Washington, DC for Head to the Hill, they used the opportunity to raise awareness in their state by publishing a letter to the editor in the Phoenix Republic about their experience in DC. Richard and Sandy advocate in memory of their son Sam, who lost his battle with a brain tumor in 2011 when he was 20 years old. Each year, they participate in the Phoenix Brain Tumor Walk with their team, Team Sam the Lion. Thank you, Richard and Sandy, for your continued partnership in advocating for brain tumor patients in Arizona and around the country.

Thank you all again for your support. Together we are making a difference.


David F. Arons
Director of Public Policy

National Brain Tumor Society is fiercely committed to finding better treatments, and ultimately a cure, for people living with a brain tumor today and those who will be diagnosed tomorrow. This means effecting change in the system at all levels. It's time to build on progress and transform tomorrow today.

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