Disney star Cameron Boyce’s death at the age of 20 after fatal seizure is bringing attention to a condition that affects 1 in 26 Americans and is getting more expensive to treat.
Boyce, who starred in the 2008 horror film “Mirrors” and the Disney DIS, +1.07% Channel kids show “Jessie,” was found dead in his home on Saturday. Boyce “passed away in his sleep due to a seizure which was a result of an ongoing medical condition for which he was being treated,” a representative for the actor’s family said. Boyce suffered from epilepsy and that condition caused the seizure that led to his death, his family said.
What is epilepsy?
“Epilepsy is common, complex to live with, and costly. It can lead to early death if not appropriately treated,” Rosemarie Kobau, M.P.H, head of the Centers for Disease Control’s Epilepsy Program, said in 2017 when the CDC released figures showing an increase in the disorder.
Epilepsy is a chronic condition characterized by recurring seizures, according to the Epilepsy Foundation. These seizures are unprovoked, meaning they aren’t a result of another medical condition such as low blood sugar. Doctors diagnose patients with epilepsy after two or more of these unprovoked seizures. Sometimes epilepsy can be a result of a stroke, brain tumor, or brain injury, according to the CDC. But for 60% of epilepsy patients, the cause isn’t apparent.
A seizure is “a sudden, uncontrolled electrical disturbance in the brain,” according to Mayo Clinic. Though the electrical disturbance occurs in the brain, symptoms of the seizure can show up in any part of the body.
A seizure lasting longer than five minutes — typically referred to as convulsive status epilepticus — is considered an emergency.
Sudden unexpected death in epilepsy (SUDEP) — in which an individual “in their usual state of health” dies abruptly — occurs in 1 in 1,000 people with epilepsy. The reason behind the sudden death is often unknown, but 70% of the time, it occurs when an individual is sleeping and sometimes it comes shortly after a seizure. Doctors often don’t warn patients about SUDEP, in part because it’s scary and often unpreventable if the individual is sleeping alone, the New York Times reported.
Individuals with epilepsy can also die during or after a seizure if they inhale vomit or saliva into their lungs.
The cost of epilepsy
Besides the danger of sometimes uncontrollable seizures, epilepsy can create a significant financial burden as well.
“21% of adults living with epilepsy reported not being able to afford their prescription drugs in a 2016 study,” Elizabeth Dueweke, manager of communications at the Epilepsy Foundation, told MarketWatch.
Anti-seizure drugs aren’t cheap, and they’re getting more expensive. The prices of some epilepsy drugs, like zonisamide and clobazam, rose more than 90% between 2013 and 2016, U.S. News & World Report reported. The average price of all medications in the U.S. is rising at about 10% each year in the U.S.
Some anti-seizure drugs come in generic form. Others are still patented and generally sell for a higher price.
Individuals with Medicare, Medicaid, or another type of insurance will generally pay significantly less than the listed drug price. But those who aren’t covered could end up paying as much as $800 a month — the price of 30 pills of common anti-seizure drug Aptiom — to treat their epilepsy.
On average, the annual costs of epilepsy treatment for individuals with the condition “ranged from $1,022 to $19,749,” Dueweke said.
Living and working with epilepsy
Individuals with epilepsy can apply for work accommodations — meaning that their employer must make any needed changes to the workplace or job functions to help the person with epilepsy perform their job. But in cases where seizures are controlled, these accommodations are usually not necessary, the American Epilepsy Society says.
The Americans with Disabilities Act (ADA) of 1990 provides employment protections to individuals with disabilities that are similar to protections based on race, color, sex, national origin, age, and religion. Amendments to the Act passed in 2008 stated that individuals with epilepsy are considered to have a disability and thus are protected against employment discrimination.
“As a general rule, a person with epilepsy cannot be denied employment or be terminated on the basis of epilepsy alone,” Dueweke told MarketWatch.
Each U.S. State has different driving regulations for people with epilepsy, according to the Epilepsy Foundation. Generally, individuals may drive once a doctor has said it’s safe for them to do so and once they have been seizure-free for a specific period of time.
How common is epilepsy?
Epilepsy can be diagnosed at any age, but it most commonly begins in individuals who are under the age of 20 or over the age of 65, according to the Epilepsy Society. It’s unclear when Boyce’s seizures began.
In 2015, 1.2% of the U.S. population was living with epilepsy, says the CDC. That’s more than 3.4 million people. Worldwide, that number reaches 65 million. One in 26 U.S. residents will develop epilepsy at some point in their lives, and the number of Americans with the condition is on the rise, the CDC says. However, the increase can be partly attributed to population growth.
Treatment and prevention
After diagnosis, patients typically begin taking anti-seizure medication. There are a variety of different medications designed to prevent seizures. They work differently for different people and also come with different side effects, including fatigue, dizziness, and nausea.
In addition to medications, doctors will sometimes advise patients to stick to a ketogenic diet — low in carbs and high in fats — which may help prevent seizures.
Other patients whose seizures cannot be prevented by medication may receive brain surgery for their epilepsy. About 70% of epilepsy patients can control their condition with treatments. But approximately one-third of patients continue to live with uncontrollable seizures.
Boyce’s parents have not shared the specifics of their son’s condition or treatment program.
“I’m overwhelmed with the love and support our family has received. It really does help to ease the pain of this nightmare I can’t wake up from. I can’t thank you guys enough,” Cameron Boyce’s father tweeted.