February 9, 2012
• Essential Health Benefits for Brain Tumor Patients – Our Message to Secretary Sebelius, U.S. Department of Health and Human Services
• Accelerating the Drug Approval Process – Congressional Update
• Awaiting the President’s Budget and Our Ask for Research Funding
• Head to the Hill 2012
• A shout out to The Liz Army
Essential Health Benefits for Brain Tumor Patients – Our Message to Secretary Sebelius
In the last Public Policy and Advocacy Update we shared with you three public policy objectives:
1. Increase support for and improve brain tumor research as well as basic biological and genomic research
2. Accelerate the review and approval process for potential therapies
3. Ensure that brain tumor patients and caregivers are able to access and afford the essential health care services they need.
Recently, we sent a letter to Kathleen Sebelius, Secretary of the Department of Health and Human Services urging her to use her authority to ensure that brain tumor patients have adequate health insurance coverage under the health care reform law known as the Patient Protection and Affordable Care Act. As the implementation of the law continues we shared our concern that the goal of cutting costs should not compromise access to the full range of essential health care services that brain tumor patients need including hospitalization, rehabilitation, prescription medicine and psycho-social services. We will keep you posted about how insurance benefits are determined under the law.
Accelerating and Improving the Drug Approval Process – Congressional Update
This is an important year for public policy aimed at improving and speeding up the process used by the Food and Drug Administration (FDA) to evaluate potential new therapies. The Prescription Fee and Drug User Fee Act (PDUFA), a law to be re-authorized by Congress, charges pharmaceutical companies’ fees when they ask the FDA to review applications for new drugs and then uses the money to pay for important resources needed to determine their safety and efficacy. The FDA has proposed to use the fees collected under the latest version of this law to help improve its work on rare diseases such as brain tumors. Moreover, PDUFA will serve as a legislative vehicle for additional proposals aimed at granting the FDA more authority to accelerate the review of new drug applications. There are very few FDA approved therapies for brain tumor patients. However, research has advanced to a point where we need the FDA to be able to adequately and expeditiously evaluate the important potential new therapies for brain tumor patients currently in the pipeline. I will let you know when advocacy is needed.
Awaiting the President’s Budget and Our Ask for Research Funding
Within a few days, the President will unveil his budget plan for fiscal year 2013. The plan is a general blueprint that begins the annual debate over the federal budget including spending on important programs brain tumor patients need such as Medicare, Medicaid, Social Security, and also on federal investment in biomedical research. Last year, due to advocacy, we were victorious in our goal to increase funding for the National Institutes of Health and the National Cancer Institute. This year, we ask of Congress to again increase NIH’s budget by $3 billion to an overall $33 billion. The increase would not only keep pace with inflation but would also help ensure critical research continues. During this year’s advocacy day, we will be urging Congress to do its part to support brain tumor research at NIH.
Head to the Hill 2012
Throughout the year, we will identify special opportunities for action, called Brain Tumor Action Weeks. During these weeks we will mobilize and advocate with our elected officials when they are home from the nation’s capitol. However, please mark your calendars - on May 7 and 8, brain tumor patients, families, caregivers, supporters, advocates, and volunteers will come together in Washington, D.C. to bring our message to Capitol Hill. During our annual brain tumor advocacy day, participants meet with their Members of Congress and staff to discuss critical policy issues that directly impact the brain tumor community. This year, we’re making some exciting new changes in order to make this our biggest and most successful advocacy day yet. We’ve given it a new name - Head to the Hill - and we’re teaming up with our Race for Hope D.C. partner, Accelerate Brain Cancer Cure. Details and registration materials will be available soon. In the meantime, contact Jennifer Lemmerman at email@example.com for more information.
A shout out to The Liz Army
I want to share with you something, or rather someone, who is a special leader in the brain tumor community. Liz of The Liz Army, www.thelizarmy.com is a current patient with an astrocytoma who is sharing her journey of survival by blogging, volunteering, and advocating on public policy. We recently teamed up with Liz on twitter during the State of the Union Address in late January and engaged the online brain tumor community. Liz is simply an inspiring person with valuable experience and information for all who care about surviving this disease. I encourage you to visit her website and introduce yourself.
Thanks for your on-going support.
David F. Arons, JD
Director of Public Policy