Highlights from the Hill

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Highlights from the Hill                                  May 13, 2013

Annual Policy Conference and Hill Day Brings Together Families Living with Epilepsy: The Epilepsy Foundation's annual Public Policy Institute and Kids Speak Up! conference was held April 21^st through 23^rdin Washington, DC. Representatives from 28 states and 35 affiliates participated in the conference and Hill day, which brought together 154 teens, parents, affiliates and volunteers for a day and a half of learning and advocacy training that culminated with a Hill day on April 23^rd. Families and affiliates shared their personal stories and advocated in support of the Epilepsy Foundation's legislative goals through more than 170 Congressional meetings.

The families who attended this year's Public Policy Institute and Kids Speak Up! conference learned about the importance of speaking up to raise awareness of the challenges of living with epilepsy, and were also inspired by hearing from individuals who are living with epilepsy, including Tony Coelho, a former Member of Congress and the lead author of the Americans With Disabilities Act; Mighty Mike Simmel of the Harlem Wizards; and Chanda Gunn, Team USA's goaltender at the 2006 Winter Olympics. The families understand how each of us can take a role in educating policymakers at all levels about our needs and now return home ready to be epilepsy advocates in their communities. The Foundation will work with families, affiliates and volunteers over the course of the next year to do more to share information on living with epilepsy and how to be seizure smart. Click here to learn more about this year's conference and view pictures from the Hill day.

Sequester and Budgets for FY 2014:

On Wednesday, April 10, President Barack Obama introduced to Congress a $3.8 trillion federal budget plan for Fiscal Year 2014. The budget provides $80 billion in discretionary funding for the Department of Health and Human Services (HHS), which is $3.9 billion above the level enacted in 2012. Highlights from the HHS budget include $31 billion for the National Institutes of Health, with $1.6 million for National Institute of Neurological Disorders and Stroke (NINDS) and $100 million for the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative$11 billion for the Centers for Disease Control and Prevention (CDC); and $ 9 billion for the Health Resources and Services Administration (HRSA).

The President's budget serves as a blueprint for the administration's funding priorities, and now lawmakers, especially those who serve in the House and Senate appropriations committees, are working on funding levels for the agencies. Representative Ed Perlmutter (CO-7) urged the Labor, Health and Human Services, Education and Related Agencies Subcommittee of the House Appropriations Committee to support federal funding for several programs important to the epilepsy community in a letter to the Committee's leadership on April 22. Click here to view the letter.

MODERNN Cures Act: Support for the MODDERN Cures Act as a pathway to hope was one of the key messages e accelerate the search for treatment options and encourage the development of new treatments and diagnostic tools that can improve, prolong and ultimately save lives. The changes to drug development proposed by the MODDERN Cures Act shows great promise in helping those living with uncontrolled seizures or those with epilepsy syndromes like infantile spasms, Lennox-Gastaut syndrome, or Rasmussen's encephalitis, all rare conditions that begin in childhood. Click here to learn more about MODDERN Cures.

Affordable Care Act Out of Pocket Costs: The Department of Labor has issued a set of Frequently Asked Questions (FAQ) and their answers regarding the Affordable Care Act (ACA), and in this FAQ they state that certain group plans will have a total out of pocket limit that is twice the amount of other plans for the year 2014. This grace period could increase out of pocket costs for those with chronic conditions to around $12,000, a burden that is simply impossible for some families to bear. For this reason the Epilepsy Foundation has added our signature to a letter by the National Health Council asking the Department of Labor to revise this grace period and to treat all group plans the same. To see the letter we signed onto click here.

In the States:

Illinois: On April 23^rd legislation to improve awareness and gather research concerning sudden unexpected deaths in epilepsy (SUDEP) passed the State Senate. The measure, introduced by State Senator Dan Kotowski (D-Park Ridge), would create a national model to further SUDEP research by providing accurate data to a national SUDEP registry. SUDEP is the most common cause of death from epilepsy and accounts for an estimated 20,000 of deaths in people with epilepsy every year.

Michigan: For people living with epilepsy, being without health care coverage can impact their seizure control, endanger their health, and risk their employment. The Governor's proposals to expand Medicaid coverage in Michigan for families making less than 138 percent of the federal poverty level would help people with epilepsy and others who are working at one or more part-time or minimum wage jobs that do not offer health insurance.   Please help vulnerable state residents with your support of the Medicaid expansion. If you are a Michigan resident please urge your legislators to support Medicaid expansion to help the many low-income individuals living with epilepsy by filling out the form at the following link: http://capwiz.com/efa/issues/alert/?alertid=62606121.

Florida: Funding for Florida's Epilepsy Service Providers (FESP) was in jeopardy during this legislative session because it was not included in the Governor's budget. However, the Florida Senate and House have included funding for FESP in their budgets. Thank you to the many advocates who reached out to their legislators in support of funding for epilepsy programs in Florida!

Washington: Thanks to the work of advocates and the tireless effort of the Epilepsy Foundation Northwest the epilepsy community has secured another great advocacy victory.On May 8, Gov. Jay Inslee signed a bill into law that allows for the administration of emergency medication in schools. This legislation allows designated and trained employees who are not school nurses to administer necessary medication to students.

SHB 1541 passed both houses of the legislature unanimously in March and April and is a great reflection of the important advocacy work the Epilepsy Foundation Northwest has been doing as well as the impact many of our epilepsy advocates have made by speaking up.You can show your support for this legislative victory by taking action on the Epilepsy Foundation's page http://capwiz.com/efa/issues/alert/?alertid=62656981.