Highlights from the Hill November 21, 2014

New Congress Brings New Advocacy Opportunities

As Congress works to wrap up business in the lame duck session, we are working to make sure the epilepsy community is heard, but we have also begun to prepare for the new session in January. The elections earlier this month propelled more than 70 new Members of Congress and a switch in the majority party in the Senate.  All these changes for the 114th Congress present an opportunity to raise awareness with new Members of Congress and their staff about epilepsy and seizures, and the critical support we need for increased funding for epilepsy research and public health programs, and to improve access to care and treatments.  We need your help so we can speak together as a community, about the challenges we face but also the opportunities to improve the care and quality of life for people living with epilepsy.  Please encourage your friends and family to join our Speak Up, Speak Out network at so they can join us in sharing their story and in taking action on issues that are important to our community. 

Health Organizations Outline Goals for 21st Century Cures Initiative

The House Energy and Commerce Committee’s 21st Century Cures initiative, focused on changing the health landscape and increasing and improving research and treatments for chronic conditions, has been working with diverse stakeholders in the health community to gather ideas and goals for the upcoming Congress.  The Epilepsy Foundation has joined with nine other national health organizations on a joint letter recommending a list of actions that the 21st Century Cures initiative should focus on as it formulates policy solutions.  We believe that it is vitally important that Congress help accelerate critical research and drug development as well as creating avenues for increased investment in this research.  To read the full letter, please go to

Health Community Urges Congress to Pass Charitable Giving Incentives

The Epilepsy Foundation has joined with more than 1,000 other organizations in a letter to Congress urging them to permanently enact charitable giving tax incentives, including an IRA incentive that prompted more than $140 million in gifts to non-profit organizations throughout the country in its first two years.  This permanent incentive has already been passed in the House of Representatives, in part due to the advocacy of our community.  We are now looking to the Senate to pass this tax incentive to benefit non-profits who depend on these contributions to support valuable programs and services for patients. To read the full letter, please go to

Look #BeyondPremiums When Considering Health Plans During ACA Open Enrollment Season

As a leader of the I Am (Still) Essential campaign, the Epilepsy Foundation has been actively advocating with HHS Secretary Burwell and other agency staff about the need to improve access to care in ACA Marketplace plans, especially for people living with chronic conditions like epilepsy. Despite the high numbers of newly insured and lower premiums for many enrollees, we remain concerned about confusing and missing plan information on ACA Marketplace websites, high co-insurance and other barriers to lifesaving medications, and narrow provider networks that make it difficult or impossible to see the specialist you need. 

As part of this effort, and with the ACA open enrollment season starting November 15th, we encourage you to look #BeyondPremiums when selecting a health plan. We have developed a plan checklist to help you understand your health care needs, and gathered additional resources, at We also want to hear from you about any challenges you’ve faced this year when trying to gain access to, and affording, the medications and specialists you need. Are your medications covered by your plan? Have you faced high out-of-pocket costs for them? Did you have to switch medications or specialists because they were not covered by your plan? We have created a survey to capture this information, which will make it easier for us to raise awareness with federal and state officials about the need to look #BeyondPremiums and improve access to care in ACA Marketplace plans, especially for people living with chronic conditions like epilepsy.

Take a few moments to complete the survey today at http:/

You can also learn more about the I Am (Still) Essential campaign and help us spread the message about looking #BeyondPremiums by visiting and liking the campaign’s Facebook page at, where the latest news and resources are posted. 


You can read about what has recently happened in the states by going to the In The States page.