Families and people living with epilepsy know that access to medications and neurologists means the difference between good health with seizure control and uncontrolled seizures with medical costs and even death. Anti-epilepsy drugs (AEDs) are the most common and most cost effective treatment for controlling or reducing seizures. Epilepsy specialists and neurologists open the door to therapies tailored to individual patient needs, lifestyles, and other health care circumstances. Better physician directed care can lead to greater seizure control with fewer side-effects. Yet many people living with seizures don’t see a specialist and continue to experience debilitating and often life-threatening seizures despite available treatments.
Data recently published in Epilepsy & Behavior demonstrate that use of newer AEDs, access to specialty care, and deliberate efforts to change medications following epilepsy-related hospital encounters are associated with improved health outcomes.
The data confirm what we already know: people living with epilepsy must have access to specialists who can help them on the journey to seizure control. But a number of barriers stand in the way of access to specialists and the newer AEDs that could bring greater seizure control with fewer side-effects. These include onerous prior authorization and step therapy requirements, substitution policies, and limited provider networks. How do we remove these barriers? First, we need to educate the stakeholders than can build bridges to better care.
The Epilepsy Foundation has released state-by-state scorecards to begin a conversation with state policymakers about the value of meaningful access to care for the individual, their families and communities, and ultimately the state. These tools measure access to newer AEDs and specialty care in every state. You can view the scorecards at www.epilepsy.com/scorecards.
“Our hope is that these scorecards will raise awareness about barriers to epilepsy care at the local level and, over time, build momentum for stronger public health policies that ensure access to quality care for the 1 in 26 Americans who will develop epilepsy in their lifetime,” said Philip Gattone, president & CEO of the Epilepsy Foundation.
The scorecards serve as a companion to the Epilepsy & Behavior publication. They allow policy leaders to look at each state’s utilization of newer AEDs and the availability of specialty care from a neurologist when compared to other states. These metrics were determined by such factors as favorability of managed care coverage and proximity of the state’s population to a specialized epilepsy center recognized by the National Association of Epilepsy Centers (NAEC). The scorecards identify potential barriers to optimal epilepsy care and opportunities for improvement no matter what grades are received.
Individuals taking at least one newer AED (introduced since 1994) reduced their risk of hospitalization due to epilepsy complications by 31 percent compared to individuals taking an older AED (introduced prior to 1994). Individuals who had their medication regimen modified following their hospital stay were less likely to experience seizure-related complications that landed them back in the hospital, especially when they were switched from an older to a newer AED. Not surprisingly, neurologists near specialized epilepsy centers recognized by the NAEC were more likely to assist patients with making medication changes that led to reduced hospitalization costs.
Despite the many treatment options, about a third of people living with epilepsy don’t have their seizures under control. Epilepsy medications are not interchangeable, and individuals often react quite differently to available treatments. When people first start on seizure medication, about 47 percent become seizure free with the first medication. After a second drug is introduced, about 14% become seizure free. After that second drug, the response to medication decreases markedly. With each medication comes side-effects, often significant enough that quality of life is compromised and many people abandon their treatment. This is why we need meaningful access to the full range of therapies available—and the specialists who know how to prescribe them.
The human toll of uncontrolled seizures is significant and extends beyond the individual living with epilepsy. Along with a decreased quality of life and costly health complications, there’s also the lost wages and productivity for individuals living with epilepsy, their families, and their communities. Prior authorization, step therapy and “fail first” policies, and substitution requirements that delay starting a treatment and prolong ineffective treatment lead to seizures and related complications. Cost-sharing policies like high deductibles, co-pays and co-insurance can make AEDs unaffordable. Narrow provider networks make it increasingly hard to find a specialist.
The scorecards outline steps each state can take to improve access to neurologists and ensure stronger drug formularies. Removing barriers to prescribing newer AEDs, including utilization management and cost-sharing policies designed to cut costs and delay treatment, is a first step. States must also pursue stronger provider networks that in turn support the establishment of specialized epilepsy centers. Providers need the time to focus on the individuals they care for. Instead, they often find themselves wasting time trying to navigate bureaucratic hurdles that leave them and their patients confused and overwhelmed. States can change the landscape of epilepsy care, and the scorecards offer a roadmap for doing so.
For many years the Epilepsy Foundation has been leading the fight for greater access to care in state capitols across the country. Our newly published scorecards will help us continue to tell the story, now armed with data that supports the case for meaningful access to innovative medications and specialty care. The reduction in epilepsy-related hospitalizations can be attributed in great part to intervention by a specialist after a seizure, highlighting the importance of access to specialty care and newer medications to secure and maintain seizure control—and significantly reduce costs. Join us as we raise awareness about epilepsy and seizures, and the critical role access to newer medications and specialists play for improving the life of people living with epilepsy everywhere. Learn more at epilepsy.com/advocacy. n