Research & Innovation
The Epilepsy Foundation supports policies that promote research and innovation into new therapies and devices, as well as proposals to lift barriers to getting new treatments to patients faster. Innovation is of particular importance to the nearly one million people living with epilepsy who don’t have their seizures under control and are seeking new treatments and a cure, as well as many Americans living with complex chronic and rare conditions that are not appropriately managed with current treatment options.
To help further research and innovation, we specifically supported the Advancing Research for Neurological Diseases Act (S. 849), which creates a system to gather data about neurological conditions and diseases. This legislation was enacted as part of the 21st Century Cures Act, which President Obama signed into law on December 13, 2016. We will continue to advocate that epilepsy is explicitly included in this registry at the Centers for Disease Congrol and Prevention (CDC).
The Epilepsy Foundation has actively advocated in support of several bills to reschedule cannabis and remove CBD from the Controlled Substances Act in the House and Senate and to remove federal barriers to research on the connection between cannabis and seizure control.
The Epilepsy Foundation supported the enactment of 21st Century Cures Act, which President Obama signed into law on December 13, 2016. This bipartisan bill increases funding for medical research at the National Institutes of Health (NIH) and innovation at the Food and Drug Administration (FDA), creates incentives for developing therapies for rare conditions, and strengthens the patient voice in the regulatory environment. It will accelerate the discovery, development, and delivery of lifesaving medical treatments by bringing the nation’s health care innovation infrastructure into the 21st century.
The Epilepsy Foundation is engaged in PDUFA and MDUFA discussions with a focus on bringing the patient voice into FDA’s review of drugs and devices.
A strong and secure patent system that encourages investments in innovative treatments and devices is critical for the millions of Americans waiting for breakthrough therapies and a cure to live their lives to their fullest potential.
The Rare Epilepsy Network, known as REN, is a collaboration between the Epilepsy Foundation, RTI International, Columbia University and 23 different organizations that represent patients with a rare syndrome or disorder that is associated with epilepsy or seizures. The REN will establish a registry of patients, including patient or caregiver-reported data, to conduct patient-centered research.
The Epilepsy Foundation actively supported legislation signed by the President in November 2015 that will require the Drug Enforcement Administration (DEA) to schedule a new therapy within a set timeframe after approval by the Food and Drug Administration (FDA).