National Brain Tumor Society - Public Policy and Advocacy Update
Vol. 2. No. 3
March 14, 2012
• Appropriations Update – Brain tumor research funding at stake in FY 2013 budget
• Supreme Court Getting Ready to Hear Arguments About the Affordable Care Act – What’s at issue for the brain tumor community
• Major legislation being assembled to pay for FDA investment in “orphan drugs”
• Having trouble affording temozolomide due to high insurance co-pays? Let us know. We’re advocating for you.
Appropriations Update – Brain tumor research funding at stake in FY 2013 budget
Congress is beginning its annual budget process this month with a budget resolution (annual budget blueprint) from the House of Representative’s Budget Committee. The resolution will determine how much money appropriators have to spend on key agencies including the National Institutes of Health (NIH) – the largest funder of brain tumor research in the country. Recognizing that President Obama called for flat funding of NIH, which is really a cut if you count inflation, it will be critically important to urge Senators and Representatives to continue to increase funding on a bipartisan basis as they did for FY 2012. Several Senators and Representatives including Senators Casey (D-PA) and Burr (R-NC) and Representatives Markey (D-MA) and Bilbray (R-CA) are to be commended for urging their colleagues to sign a letter in support of biomedical research at NIH. National Brain Tumor Society’s action alerts in March and April will focus on the issue. We hope you advocate early and often.
Supreme Court Getting Ready to Hear Arguments About the Affordable Care Act – What’s at issue for the brain tumor community
During the last week of March, the U.S. Supreme Court will hear oral argument on the various challenges to the Patient Protection and Affordable Care Act (the health care reform law). It is likely that the Court will make a decision about the constitutionality of all or part of the law by the end of June. There is a lot at stake for brain tumor patients and caregivers. The individual mandate – the portion requiring individuals to buy subsidized health insurance – is considered by many to be the lynch pin for the law. If it is ruled unconstitutional then other important provisions may also be stricken or there will be strong pressure to repeal them. Provisions that could help brain tumor patients include: affordable health insurance for the un and underinsured, the elimination of pre-existing condition denials, the prohibition on annual or lifetime caps on health insurance payment, the expansion of parents’ health insurance to children up to age 26, and coverage of routine medical costs associated with clinical trials. If the law is upheld, we will advocate for appropriate implementation. If the law is struck down, we will advocate for new policy to address barriers to adequate health insurance. We will be blogging and posting comments to twitter and facebook during the oral arguments to inform our community.
Major legislation being assembled to pay for FDA investment in “orphan drugs”
Every five years the Food and Drug Administration and the pharmaceutical and medical device industries work out an agreement over the fees companies will pay the FDA to review applications for new drugs and devices. A key issue for consumers is how will the money be spent. This year Congress is assembling legislation to re-authorize the agreement called the Prescription Drug User Fee Act (PDUFA). National Brain Tumor Society is in favor of the fees being used by the FDA to understand and review applications for therapies related to so-called “orphan diseases.” These diseases impact 200,000 Americans or less. We are working aggressively to understand and remove unnecessary regulatory barriers to advancing therapies while advocating for patients’ safety. We will keep you apprised of the progress of FDA related legislation as it has an important bearing on how fast new therapies make it from the lab to patients.
Having trouble affording temozolomide due to high insurance co-pays? Let us know. We’re advocating for you.
Temozolomide, known by the brand name Temodar, is one of the very few chemotherapy medicines available for patients with brain tumors. Most often it comes in pill form to be taken orally. Unfortunately, as this and other oral chemotherapy medicines have become more prevalent for cancer patients, health insurance has not modernized. Oral chemotherapy agents are often treated as prescription drugs rather than being covered under the medical benefits where traditional intravenous chemotherapy is covered. The result is sometimes patients have to pay high monthly co-pays in order to access the only medicine available to treat their brain tumor. National Brain Tumor Society is supporting HR 2746 the Cancer Drug Coverage Parity Act sponsored by Rep. Brian Higgins (D-NY). The bill will prohibit health insurance plans from charging patients given oral chemotherapy on a less favorable basis than they charge for traditional IV chemotherapy. We view this as critical legislation given the future growth of oral chemotherapy and are advocating for more Members of Congress to support the bill.
If you or someone you know is taking Temodar in pill form and is having difficulty with monthly co-pays – please let us know. We want learn more about how the issue impacts brain tumor patients and families so we can be strong advocates for our community.
Thanks again for all your support. We look forward to seeing you at National Brain Tumor Society events this spring and summer and hope to see you at Head to the Hill on May 7 and 8 in Washington D.C. where we will make our voices heard. Learn more and register on our website.
David F. Arons, JD
Director of Public Policy