FOR IMMEDIATE RELEASE
WASHINGTON, D.C., July 2, 2019 – Today, the Epilepsy Foundation released updated principles and positions on access to prescription medications in response to state-level, Congressional, and Administrative efforts to address high drug prices, rising out-of-pocket costs and insurance hurdles. For the majority of people living with epilepsy, anti-seizure medications are the most common and cost-effective treatment for controlling and/or reducing seizures. However, affordability of, and timely access to, these medications remains a consistent issue. Delaying or impeding access to anti-seizure medications puts people with epilepsy at risk for breakthrough seizures and related complications including injury, disability or even death. According to a 2016 study, 21% of adults living with epilepsy report not being able to afford their prescription drugs.
“In addition to cost barriers, many in the epilepsy community face additional delays and hurdles to access necessary medications in a timely manner like step therapy and prior authorization, which can have serious, even life-threatening consequences,” said Philip M. Gattone, M.Ed., president and CEO of the Epilepsy Foundation. “People with disabilities and chronic conditions are bearing a heavy burden, simply to access prescribed, needed medications. For too long, they have been caught in the middle of complex health insurance designs and an obscure drug supply chain.”
Given that there is currently a plethora of policy proposals to address mounting drug prices and other access barriers being considered at the state and federal levels, the Foundation formed a working group to examine these proposals and update its positions on policies relevant to the epilepsy community. The team included individuals living with epilepsy, healthcare providers, a national board member, and staff at the local and national level – across departments including Research & New Therapies, Advocacy, and Programs & Services, including representatives from Information and Referral who run the Foundation’s 24/7 Helpline.
The working group evaluated a vast array of proposals aimed at improving prescription medication access and costs against the following principles: safety and efficacy; affordability; accessibility and continuity; and physician-directed and person-centered care. With those principles as a guide, the Foundation has updated positions on topics of importance to the epilepsy community, including increasing transparency, implementing insurance reforms, international price benchmarks, and pushing generics to market. As more policy solutions are put forth, the positions may evolve.
“The consequences of people with epilepsy not having affordable, timely access to their medications are too severe,” said Gattone. “We are calling on elected officials and all stakeholders to stand up for people with chronic conditions and diseases and create solutions where people — including those with epilepsy and seizures — are put first.”
According to the World Health Organization, epilepsy is the most common serious brain disorder worldwide with no age, racial, social class, national or geographic boundaries. The U.S. Centers for Disease Control & Prevention (CDC) estimates that 3.4 million people in the United States are affected by epilepsy. It is the underlying tendency of the brain to produce seizures which are sudden abnormal bursts of electrical energy that disrupt brain functions.
About the Epilepsy Foundation
With a network of nearly 50 partners throughout the United States, the Foundation connects people to treatment, support and resources; leads advocacy efforts; funds innovative research and the training of specialists; and educates the public about epilepsy and seizure first aid. For more than five decades, the Epilepsy Foundation has shone a light on epilepsy to promote awareness and understanding, and to advocate for laws that matter to people with epilepsy, while also funding $65 million for epilepsy research and supporting 3,076 epilepsy investigators and specialists in their early careers. Over the past 17 years, in partnership with the CDC, the Epilepsy Foundation has helped to improve access to care for people with epilepsy, expanded its digital reach and online resources in homes across the country, and trained more than 500,000 school and community personnel in how to recognize seizures and administer seizure first aid. The Foundation has also assisted more than 108,000 people through its 24/7 Helpline in the past five years, and continues to focus on innovation, new therapies, community services, advocacy and education as key priorities. To learn more visit epilepsy.com or call 1.800.332.1000. Follow us on Facebook and Twitter.
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