I and many other health care policy experts are concerned about the lack of congressional urgency to safeguard vital patient access to virtual care, especially on the heels of National Epilepsy Awareness Month in November. Without congressional action to protect Medicare telehealth flexibilities originally introduced during the COVID-19 pandemic, millions of Americans who rely on virtual care are at risk of facing a telehealth cliff as current flexibilities are set to expire at the end of this year. Protecting virtual care access is especially critical for people with epilepsy who have integrated telehealth into their disease management treatment plans and rely on it to receive care. By late 2023, telehealth services were still utilized by a quarter of eligible Medicare users, a significant increase from pre-pandemic levels, indicating its importance in expanding healthcare access and equity. Despite its significance in revolutionizing chronic disease management, the future of telehealth remains uncertain without federal action to protect flexibilities.
Epilepsy is a brain disorder that causes recurring, unprovoked seizures. Epilepsy affects nearly 3.4 million people in the U.S. There are many different types of seizures and varying levels of seizure control. At least 1.1 million people with epilepsy rely on Medicare for access to healthcare and treatments.
Telehealth is of particular importance for people with epilepsy because there are many communities that do not have access to local epileptologists or epilepsy centers. This difficulty in access to expert care is compounded by the fact that many people with active epilepsy cannot drive due to their condition, and may often require a family member to accompany them to visits for safety reasons.
Telehealth has revolutionized and eased access to epilepsy care. While no cure exists today, treatments provide seizure control for two-thirds of people with epilepsy, and preventive measures are essential. Telehealth allows people with epilepsy to easily consult specialists and schedule appointments, reduce or eradicate travel time to specialty epilepsy care, ease prescription refills and share critical health data, such as videos of seizures, with their healthcare providers.
For example, follow up neurological exams that are important for people with epilepsy can be done virtually thanks to telehealth. These visits give them the opportunity to describe recent seizures and also discuss with their health care provider issues such as the impact of medication or need for changes, any recent breakthrough seizures, and more from the comfort of their own homes. If a person is recovering from a seizure or is actively having a seizure and may be fearful of another, telehealth also allows them to seek care in a place that is familiar and comfortable for them.
Research published in Neurology supports telehealth as a comparable alternative to in-person visits. A study of 590 epilepsy patients found no significant differences in seizure outcomes, emergency room visits, medication changes, or discussions about surgery between telehealth and traditional appointments. Further, researchers at Massachusetts General Hospital and Harvard found that telehealth supported “measurable and high-quality epilepsy care during the COVID-19 pandemic,” noting “high completion of standardized documentation of seizure-related information” for routine outpatient epilepsy care at a level 4 center.
As a neurologist, I support the use of telehealth when the person with epilepsy and their healthcare provider deem it appropriate, and so do many of my colleagues in the field of epilepsy. Simply put, telehealth offers long-term benefits for people with epilepsy by easing access to specialized care and addressing challenges they have faced for decades.
The benefits of telehealth are evident, but its continued quality and accessibility are not guaranteed. The Epilepsy Foundation through the Epilepsy Learning Healthcare System (ELHS) and ELHS’ centers, programs, and physicians empowers patients to live their highest quality lives. This includes providing resources to ensure people with epilepsy are prepared for their virtual visits and recognizes its value. However, virtual care remains at risk. Critical telehealth protections are currently set to expire at the end of this year unless Congress takes immediate action to save and preserve telehealth benefits for at least two years.
Without additional action from Congress, people with epilepsy and millions of other Americans with unique healthcare needs could be without the access to necessary care. For people with epilepsy, this can result in breakthrough seizures and related complications including injury, disability or even death. Lawmakers must enact policy to protect these valuable telehealth protections without unnecessary restrictions that would undermine the full promise of virtual care to people with epilepsy.
The Epilepsy Foundation stands with people with epilepsy across the country in calling on Congress to protect patient access to virtual care, as telehealth protections are about to expire, and always.
Jacqueline French, M.D. is the Chief Medical and Innovation officer at the Epilepsy Foundation. She is also professor of Neurology at NYU Langone Health's Comprehensive Epilepsy Center, and director of the Epilepsy Study Consortium.
