Living with epilepsy is challenging enough on its own, but living in a rural area without reliable access to medical care can add a whole host of additional hurdles to receiving adequate treatment. Having reliable access to medical care is crucial in managing a chronic neurological condition like epilepsy, which is treatable in an estimated 70% of people, provided they receive proper care.
However, for millions of Americans living outside urban areas, getting medical care isn’t always so straightforward.
People living in rural, underserved regions often face longer drive times, limited healthcare services, reduced access to emergency care, and fewer educational support groups. It’s a surprisingly widespread problem: nearly 60 million Americans live in a rural area, and with 1 in 26 people developing epilepsy during their lifetime, rural patients are frequently left behind in their medical treatment.
Fortunately, advances in telehealth technologies and grassroots educational efforts are helping pave the way to more equitable care in the epilepsy community.
Access to healthcare in the United States is primarily clustered around urban areas; consequently, a whopping 11 million Americans live in counties without a single hospital. As a result, nearly one-quarter of people who live in rural areas say they struggle to access hospitals and their doctors.
In fact, more than half of counties in the United States have zero ICU beds in their hospitals, leaving an estimated 18 million people without access to intensive care. To make matters worse, rural hospitals have historically been more likely to close their doors permanently compared to urban hospitals, further widening the gap in coverage for people who live in underserved regions.
This is especially ominous for people with epilepsy who live in rural areas but may require immediate or regular care.
People with epilepsy are more likely to require emergency medical attention, with 5% of 911 calls and 1% of emergency room visits being due to seizures. On top of that, every year, an estimated 13% of adults and 22% of children with epilepsy will require a visit to the emergency room.
In order to effectively manage epilepsy, having ready access to emergency services and medical tests is often a time-sensitive issue, especially for people who are in the early stages of receiving a diagnosis for what types of seizures they’re having.
Unfortunately, not only do many people with epilepsy live in an area without a county hospital or ICU, but getting to the hospital or doctor’s office can be a long trek or unmanageable commute.
To put it in perspective, Americans in rural areas live approximately 17 minutes away from the nearest hospital on average, compared to 10 minutes for people in urban areas. People who live in the most rural areas are on average 34 minutes away from the nearest hospital. When seizures strike, getting timely care is critical, and every minute counts.
Compounding the problem, if a person with epilepsy doesn’t have a driver’s license—as is common for people with epilepsy—or a caregiver who can drive, travel times can bloat further or even make it untenable.
Given the multifaceted issue of reduced access to care for rural patients, the solution will also have to be multipronged, requiring technological innovations and increased advocacy efforts.
Fortunately, the private sector is rising to the occasion by pioneering new telehealth and remote-care technologies and services for underserved communities.
As telehealth goes mainstream, evidence is mounting to show how remote-care can improve the accessibility, affordability, convenience, and record-keeping accuracy of patient care. For people who live in rural areas who would otherwise struggle to get to their doctor’s office, telehealth could prove to be an indispensable lifeline.
In the case of epilepsy, we at Novela are moving full steam ahead in bringing our wearable seizure diary to market to empower patients with 24/7 remote-care monitoring of their epilepsy. By reducing the need for patients to make long treks to in-person appointments and providing a data-driven way of improving health outcomes, we aim to vastly improve the quality and affordability of care for all people with epilepsy, including the millions who live in rural areas.
Nonprofit organizations and grassroots initiatives may also help fill in the gaps of missing coverage in underserved communities. In a 2018 study, it was found that piloting new or expanded chapters of the Epilepsy Foundation in rural and geographically diverse communities led to greater access to educational resources and improved self-management of epilepsy.
All in all, improving access to care for underserved rural communities is a task that will require technical innovation, advocacy work, and grassroots support to bring more equitable outcomes to the epilepsy community.