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A recent battleground-state poll by the Galen Institute and Center Forward confirmed what leaders in health care have been advocating for some time: the vast majority of voters (nearly two-thirds) want to see the next president prioritize medical discovery during the first 100 days in office.
For the epilepsy community, this is welcome news. Today, 1 in 26 Americans will develop epilepsy in their lifetime. Additionally, as no cure currently exists, one third of people with epilepsy live with uncontrollable seizures, making research and innovation a priority for the epilepsy community. For people living with seizures and their families, this new era of discovery represents a unique and timely opportunity to ensure that the right conditions are in place to support the discovery of new treatments and, eventually, a breakthrough.
Fortunately, there’s reason for optimism. Many significant advances have been made in epilepsy over the past several years, development of innovative anti-seizure medications, medical devices, and surgical options. Unfortunately, the number of people with epilepsy who are still experiencing seizures, despite being treated for the condition, hasn’t changed. In short, we need both incremental and major breakthroughs.
With 150,000 new cases diagnosed in the U.S. each year, our nation only stands to benefit from directing more attention towards epilepsy. Recent initiatives, such as the creation of new patient registries and a newly announced partnership with the Centers for Disease Control and Prevention, are enabling doctors and researchers to better understand the condition and find new ways to improve the lives and quality of care for patients living with epilepsy.
Regardless of this year’s election outcome, the numbers and facts reiterate the urgent need for ongoing investment in new treatments. Innovation has flourished across the biosciences, but epilepsy has often been left behind, and there is no better time than the present for the disease to be the focus of clinical trials and the development of new medicines.
In 2017, we have a unique opportunity to further align public policy with this goal given that Congress must reauthorize the Prescription Drug User Fee Act. Without it, we risk losing sight of what it means to put patients first and help ensure that the FDA continues to effectively and efficiently review innovative treatments. This is particularly important to patients with epilepsy, where gaining seizure control, improving quality of life and finding a reliable treatment literally means everything.
We cannot afford to be complacent when it comes to making new discoveries for patients with epilepsy, especially those who cannot control seizures. Ensuring reauthorization of PDUFA VI in a timely manner is an important step forward. Lawmakers from both parties agree that we’re on the cusp of major advancements across the biosciences.
Some seizures rarely cause problems for people, but overall, the chance of injury is higher for people with uncontrolled seizures. During a seizure, people can injure themselves, develop other medical problems or experience life-threatening emergencies. The overall risk of dying for a person with epilepsy is 1.6 to 3 times higher than for the general population.
It’s time to change the trajectory of this disease and help support the innovative advancements being made in medicine every day. Millions of Americans are patiently waiting.
Angela Ostrom is chief legal officer and vice president of public policy and advocacy at the Epilepsy Foundation.
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