The first sign that Lynda Smith had epilepsy happened almost 20 years ago while she was driving down Interstate 30, near Hope, Arkansas, on her way to work at an HVAC installer.
First her right leg started shaking uncontrollably. Then her right arm did the same. She used her left arm and leg to veer off the highway and push on the brakes. She arrived at work dazed, bawling and still seizing. Her co-workers called an ambulance.
“That was the beginning,” she says.
At the time, Smith, now 50, had no health insurance and turned to a local community health center for help. Doctors tried treating her, but it wasn’t working. She was having up to six seizures a day.
One of the harshest adjustments was losing the ability to drive. Even harsher, she says, was that some providers treated her like she was faking it. Unable to work, she applied for Arkansas Medicaid and qualified as a low-income parent with minors at home.
With coverage, Smith could afford a specialist and more complex care. She got much better, though the medications often made her feel like a “zombie” and she wasn’t seizure-free.
Then, in 2017, she moved to Texas. She was born there, and wanted to be near family. She thought she could get Medicaid in the state, but even with little income, she can’t qualify and has been uninsured for eight years.
“I can go to any of the four states that border Texas and get Medicaid,” said Smith, who lives in Floresville, southeast of San Antonio. “In Texas, no ma’am.”
Lack of health insurance is a well-known barrier to medical care and is especially risky for people living with chronic conditions such as epilepsy. In Texas, the chances of going uninsured are greater because the state — unlike 40 other states — has not adopted Medicaid expansion to widen coverage of low-income adults.
That means some low-income Texans with epilepsy may not be eligible for Medicaid until their conditions constitute a severe disability, meaning they can no longer work or are expected to die. If Texas had expansion, adults with incomes up to 138% of the federal poverty level — or less than $22,000 a year for a household of one — would qualify for Medicaid.
Today, a single parent in Texas can’t qualify if she or he makes more than $1,300 a year.
Republican leaders in Texas have long opposed Medicaid expansion, although studies show it leads to wider access to care, better health outcomes for many and more financial stability for providers, including hospitals. Republicans are concerned about the significant rise in Medicaid enrollment and costs and want to lessen dependence on the program. In 2022, Gov. Greg Abbott told Public Health Watch that expansion is “a tax increase waiting to happen … The best way to get health care insurance is through an employer.”
In a 2024 poll, 71% of Texans said they support Medicaid expansion.
“There could be such a difference in our patients’ lives if they had insurance,” said Rebecca Moreau, chief operating officer at Epilepsy Foundation Texas, which operates free epilepsy clinics around the state for uninsured adults living at or below 200% of the poverty level.
For years, such safety-net clinics, which are funded partly with state dollars, have been a lifeline for poor Texans with the brain disorder, allowing them to access basic neurology services and medications. But the clinics can’t afford to cover all treatment possibilities, such as surgery, even if it’s a patient’s only chance to live seizure-free.
“When you’re uninsured,” Moreau said, “treatment options decrease exponentially.”
Steep risks and barriers
About 3 million U.S. adults, including almost 300,000 Texans, have epilepsy, a chronic neurological disorder characterized by unpredictable seizures. Even with health coverage, research shows people living with it face barriers to continuous care, from high medical costs and unemployment rates to lack of transportation. Their risk of an early death is two to three times greater than the general public’s.
Epilepsy can affect people of any age, and there are many causes, including genetic factors, brain abnormalities and traumatic injury, according to the National Institute of Neurological Disorders and Stroke. About half don’t know the cause of their condition.
Not everyone with epilepsy suffers the same type of seizure, either. Some seizures make a person’s muscles wildly contract; others cause a sudden loss of muscle tone. Sometimes there’s no movement at all, yet an “absence seizure” can cause an abrupt loss of consciousness. From the outside, it looks like the person is daydreaming.
“Someone could have hundreds of those a day,” Moreau said. “A couple seconds each time, hundreds of times.”
Because epilepsy is classified on a spectrum, patients need individualized care and may try many different medications and combinations of therapy before finding a regimen that
lets them live as seizure-free as possible. For more than a third of people with epilepsy, the disorder is drug-resistant and seizures continue despite treatment.
Affording the care is difficult, and employment options can be limited. Jobs that involve driving, heights or being near fire, for example, might be too dangerous for a person experiencing seizures.
The Americans with Disabilities Act offers workplace protections for people with epilepsy, but surveys show people with the disorder continue to report stigma and discrimination on the job; some research shows employers are less inclined to hire someone with epilepsy.
The situation means many people hide the condition from their employers, said Kimberly Martin, CEO of Epilepsy Foundation Central & South Texas, which also runs free epilepsy clinics for uninsured Texans — a total of six serving 79 counties.
“Get seizure-free, get a job, have a seizure, lose their job, lose their insurance and they’re back at our clinic,” said Martin. “We see this cycle over and over.”
Patients’ experiences are reflected in studies that show epilepsy is associated with higher unemployment, lower income, lack of access to employer-based health insurance, problems paying medical bills and delayed care due to lack of transportation. In Texas, people with uncontrolled seizures are banned from driving; one must be seizure-free for three months to get a license.
Nationwide, about 40% of people with epilepsy between ages 18 and 64 depend on Medicaid, according to the nonprofit Epilepsy Alliance America.
From doctors to emergency rooms to anti-seizure drugs and costs of assembling documents and filing claims, “it’s an expensive disease,” said Lisa Gallipoli, executive director of the alliance.
Soon after Smith moved back to Texas, she got a job she really enjoyed working as a gas station clerk. Even though she had spotty access to medication, she was feeling healthy and hadn’t had a seizure for a while. But she still wasn’t comfortable telling her new boss she had epilepsy.
A few months later, Smith witnessed a fatal traffic crash and had a stress-induced seizure. Her co-workers called her an ambulance.
Smith didn’t lose her job then, but she had to quit about a year later, as her health worsened and she was having too many seizures each day to safely work.
“I loved that job,” she said. “I wanted to stay.”
Help from the state, with limits
After 2014, when the Affordable Care Act and Medicaid expansion took effect, the number of uninsured people with epilepsy plummeted.
Overall, the uninsured rate for U.S. adults ages 18 to 64 and with active epilepsy decreased by more than half, from nearly 18% in both 2010 and 2013 to just more than 7% in 2015 and 2017, according to researchers.
How many Texans with epilepsy are uninsured is unclear, but the number is likely significant because the state has not expanded Medicaid and federal data show about half of adults with active epilepsy have low incomes. Texas has the nation’s highest uninsured rate, at almost 22% of working-age adults in 2023.
In general, uninsured people with epilepsy face challenges similar to other uninsured patients with chronic conditions, and go without, or ration, needed care and medicines, said Dr. Steven Croft, a Houston neurologist who sees patients at the free clinics run by Epilepsy Foundation Texas.
“They have a seizure, they go to the ER, they get loaded with medication, maybe a 30-day supply, and that’s it,” Croft said. But if they’re lucky, someone points them to the foundation for help.
In that aspect, Texas is fortunate, said Moreau, the group’s chief operating officer. Most states don’t have places focused on serving uninsured people with epilepsy — places that offer routine care from a specialist. The foundation’s clinics, which reach about 400 patients in Houston, Dallas-Fort Worth and West Texas, are funded largely by the Texas Health and Human Services Commission’s Epilepsy Program.
The program was established in 1981 through legislation authored by then-state Rep. Frank Madla, a Democrat from the San Antonio area who had epilepsy. Funding for the current five-year grant cycle, 2025-2030, is about $9.3 million, the same as the last cycle, HHSC told Public Health Watch.
State-supported epilepsy clinics fill a dire need for the uninsured, but don’t offer all of the treatment options, only basic neurology care. For example, the foundation can’t afford to pay for hospitalization or surgery, which for certain patients is more effective than medications at stopping or reducing seizures.
Without insurance, patients also get stuck with expensive emergency room bills they can’t afford to pay. Research shows people with epilepsy use emergency medical services at much higher rates than the general population.
“We’re really serving the working poor,” Moreau said.
Jose De La Rosa, 42, has been seeing a specialist at the foundation’s Houston clinic for about 10 years. His seizures began as a teenager in California, two or three times a day at first.
De La Rosa works in construction and said if he lost access to the clinic’s help, he would try to pay out of pocket for his care. But it would be difficult on his income with two young children and his wife depending on him. With proper treatment, he’s been seizure-free for almost seven years.
“The good news is most people’s seizures are controllable,” Croft said.
Epilepsy Foundation Central & South Texas operates similar clinics for about 1,700 low-income, uninsured patients from Austin to the Rio Grande Valley. Rebeca Deluna, social services associate at the nonprofit, said many of their patients struggle with stable employment and transportation. Isolation is also common.
“It’s a challenge for them emotionally, it’s a challenge for them physically,” Deluna said. “We really try to overcome all those barriers.”
The clinics can be a patient’s home for epilepsy care. But without insurance, their other health care needs may go unaddressed, sometimes making it harder to control the seizures, said Martin, the foundation’s CEO. Unmanaged diabetes, for example, can increase the risk of a seizure.
Martin said Medicaid coverage could help their patients cover treatment options the clinic can’t, including surgery or implant devices. The public insurance plan covers transportation to medical appointments, too.
Under the current state system, Texans with epilepsy who successfully apply for federal disability assistance are automatically eligible for Texas Medicaid. But Martin said the process is not easy and it’s common for patients to apply and get rejected multiple times.
It can take months for a disability applicant to receive a determination, and months more to appeal a denial.
“In states that don’t have clinics like ours, people don’t know where to go,” Martin said.
HHSC’s epilepsy funding is critical, Martin said, but has never covered the full cost of running the clinics. She’s bracing now for a 15% drop in annual state funds to her organization over the next five-year grant cycle, which starts in September. The nonprofit will need to raise about $170,000 in donations to maintain current service levels in the coming budget year.
According to HHSC, the Texas Epilepsy Program, which is funded with general revenue dollars, served about 3,700 people annually in fiscal years 2023 and 2024, down from a reported 13,400 in 2021.
HHSC attributed the large decline not to a decrease in patients, but to an improved tracking methodology.
“This new method provides a more accurate count of clients served in the program using HHSC funds,” the agency said in a written statement.
Federal cuts raise alarms
Recent changes at the federal level could make circumstances even harder for people with epilepsy, both coverage-wise and for patients hoping for medical breakthroughs.
In the early months of Donald Trump’s second term, epilepsy research and programs at the Centers for Disease Control and Prevention and the National Institutes of Health were included in the administration’s scientific layoffs and funding cuts.
Trump also signed his “big, beautiful” tax bill in July, which will cut almost $1 trillion in Medicaid spending and mandate work requirements for Medicaid expansion enrollees. About 10 million people are expected to become uninsured in the next decade because of the cuts. It’s too early to know exactly how the changes will impact people with epilepsy. The White House says people with disabilities on Medicaid “will receive no loss or change in coverage.”
But Gallipoli, at Epilepsy Alliance America, said it’s hard to believe such a massive Medicaid cut won’t affect people with epilepsy, who are significantly more likely to be insured by the program than those without the disorder.
“We need all of our members of Congress to be looking out for people with epilepsy and in the current moment, they are not,” she said.
Smith, in Floresville, finally found epilepsy care about four years ago at a clinic run by Epilepsy Foundation Central & South Texas. Providers there helped her get her seizures under control; now they are few and far between. The last one happened almost a year ago. She can drive again.
She got more good news this summer. During an emergency visit for a different health issue that left her with more medical bills she can’t pay, a navigator helped her apply again for Affordable Care Act marketplace coverage.
Smith qualified for a zero-premium plan — the only kind she can afford.
But she’s scared it might not last. If her premiums increase, which could happen if insurers raise prices and Congress lets enhanced ACA subsidies expire this year, she said she’ll have to drop it.
“It’s taken so much away from me,” she said about living with epilepsy. “It steals your time, it takes your memory away … It hinders everything.”
This story is part of “Uninsured in America,” a project led by Public Health Watch that focuses on life in America’s health coverage gap and the 10 states that haven’t expanded Medicaid under the Affordable Care Act.