Highlights from the Hill
Highlights from the Hill February 4, 2014
Congress Approves Funding Government Through Fall
On January 17th, President Obama signed a bipartisan bill, the Consolidated Appropriations Act of 2014, which will fund the government for the remainder of Fiscal Year (FY) 2014 and increase funding for the Department of Health and Human Services (HHS). Funding for HHS remains too low, below FY 2010 levels, but passage of the bipartisan funding agreement will ensure research and programs that benefit and support people living with epilepsy at the National Institutes of Health, the Centers for Disease Control and Prevention and in other agencies can continue through September of this year.
Epilepsy Foundation Urges Senate Leaders to Return to Disability Treaty Negotiations
The Epilepsy Foundation has joined many in the disability community calling on the Senate Foreign Relations Committee to move forward on the bipartisan Convention on the Rights of Persons with Disabilities (CRPD). To read the letter sent by the Epilepsy Foundation of East Tennessee to Senator Corker, click HERE.
Epilepsy Community Advocates for Access to Medication in ACA Marketplaces
The Epilepsy Foundation is advocating for strong formularies and meaningful access to medications in the health insurance plans offered in the marketplaces established by the Affordable Care Act (ACA). In partnership with our affiliates across the country, we have reached out to state agencies that run and oversee the state run and federal partnership marketplaces to express our concern with limited formularies that restrict access to epilepsy medications. Current federal guidelines for setting up formularies in health insurance plans offered through the marketplace are not robust enough to ensure meaningful access to physician directed care in a timely manner. States can require plans with robust formularies that cover multiple drugs and do not rely on "fail first," prior authorization and high cost-sharing policies to limit access to care and discriminate against individuals based on a chronic condition. States can also require a transparent appeals process and pursue other measures to ensure that insured patients can access and afford medically necessary medications. To read one of the letters we've sent to state agencies on this issue, click HERE.
Senators Express Support for Charitable Deductions That Fund America's Non-Profits
As Congress considers tax reform, charitable deduction contributions, which fuels America's non-profits, could be in danger. The Epilepsy Foundation relies on generous contributions from the public to provide the education and services needed by millions of Americans impacted by epilepsy and seizures. Senators Thune and Wyden recently sent a letter signed by 31 fellow Senators to the Chairman and Ranking Member of the Senate Finance Committee. This letter urged the committee to preserve the charitable deduction, in an effort to prevent decreases in the quantity and quality of services from the nonprofit sector that are available for millions of Americans in need. Threats to the charitable deduction could potentially increase demand for government services, while costing jobs in the non-profit sector, which accounts for nearly 10 percent of America's work force. The Epilepsy Foundation sent a letter to the 33 Senators that signed on to the letter thanking them for their support of the charitable contribution. To read the letter, click HERE.
Colorado Affiliate Fights Discriminatory Proposal on Driver Licenses for People with Epilepsy
The Colorado legislature is considering a bill (HB 14-1068) that would require a physician to report if a patient has epilepsy and seizures, so the state can immediately revoke the individual's driver's license. The proposal endangers the confidential nature of the relationship between patients and their physicians, and would lead epilepsy patients to withhold information from their physicians or even forgo medical care. It also reflects a poor understanding of epilepsy by the authors of the legislation. If you or someone you know lives in Colorado, please click HERE to send a letter to your local Representatives and urge them to oppose HB 14-1068.
Virginia Holds Awards Breakfast for Epilepsy Awareness Campaign
On January 14th, the Virginia state legislators gathered for the annual Use a Helmet Prevent Epilepsy campaign awards breakfast to congratulated students from across the state who designed the winning posters for the awareness campaign. The event, organized by the Epilepsy Foundation of Virginia, was held at the General Assembly Building in Richmond. Virginia's Lieutenant Governor Ralph Northam, a pediatric neurologist, addressed the families and teachers in attendance. To see a picture of Lieutenant Governor Northam with all the awardees, click HERE.
Help us Ensure Access to Medication in Ohio
The Ohio legislature held a hearing today to consider changes to the state's monitoring program, which currently monitors Schedule V anti-epilepsy drugs (AEDs) and restricts samples provided by physicians. This endangers the health of epilepsy patients by creating unnecessary barriers to physician directed care, which is critical for achieving and maintaining seizure control. The Epilepsy Foundation and the two Ohio affiliates wrote a letter to State Representative Smith urging him to amend HB 341 to exempt AEDs from the prescription drug monitoring program and from sampling limits. To see the letter, click HERE.
If you're an Ohio resident please contact your Representative today and ask them to exempt Schedule V drugs or, at a minimum, AEDs from the monitoring program, and to lift restrictions on samples provided by physicians. This exemption will improve and protect access to medications for individuals living with epilepsy in Ohio. To send an email to your Representative, please click HERE.
FDA Funded Study on Generic and Brand Medication
The Epilepsy Foundation has strongly supported FDA research and understanding of bioequivalence issues related to epilepsy medications and switching. You can support this ongoing research and take part in this national advocacy priority! Learn more about this topic and consider participation in research that can assist with our understanding of AEDs and potentially impact FDA policy.
Eligibility to participate includes:
- Controlled epilepsy
- Between age 18-55
- Be healthy, taking a stable dose of anti-epileptic therapy
- Not taking the drug Depakote® (divalproex sodium).
This is a study that provides compensation for time and travel. For more information: https://www.vinceandassociates.com/includes/fda_epilepsy.pdf or contact: 913-696-1601