epilepsy & Universal Healthcare
Universal Healthcare Is Only Part of the Solution
Every version of universal healthcare on the table addresses who pays for care. But for people with epilepsy, the medical bill has never been the larger share of the damage. The larger share is the job, and we know less about this part of the epilepsy community's financial/job struggles than we did thirty years ago.
In 2022, the International League Against Epilepsy convened a task force to answer what sounds like a simple question: what does epilepsy cost? The researchers searched the global cost-of-illness literature for studies rigorous enough to use.
They found 101 studies with usable data on direct healthcare costs. They found 13 with usable data on indirect costs.
Direct costs are the medical bill: the neurologist, the medications, the monitoring unit, the surgery. Indirect costs are what the condition does to your ability to earn a living.
One hundred and one, versus thirteen.
That ratio is the whole story, and it is worth sitting with before we talk about a single policy proposal. The part of this that lands on insurers and health systems has been studied to exhaustion. The part that lands on us has been studied thirteen times, worldwide, ever.
And the reason that matters is that the fragmentary evidence we do have suggests the unmeasured part is the bigger one.
The most-cited American estimate comes from a 2000 study by Begley and colleagues, which put the annual cost of epilepsy at $12.5 billion and found that indirect costs accounted for 86 percent of the total. The National Academy of Medicine, reporting the same study's components, gives $10.8 billion in indirect costs versus $1.7 billion in direct costs.
Two honest caveats, because I would rather give you a usable number than an impressive one. That study used 1995 data. And a systematic review of 22 cost-of-illness studies worldwide found indirect costs ranging from 12 to 85 percent of the total, which is a very wide range.
So the defensible version of the claim is the one the Institute of Medicine itself uses: studies of the economic impact of epilepsy find that indirect, productivity-related costs generally exceed direct, treatment-related costs.
That is a weaker sentence than "86 percent." It is also enough. Because when this country argues about universal healthcare, single payer, Medicare for All, a public option, whatever the branding is this cycle, it is arguing almost entirely about the smaller line. The one with 101 studies behind it.
If you have lived with epilepsy for a decade or more, you are certainly nodding your head right now. My 'Cadillac Coverage' (my term for the most expensive, top-of-the-line coverage) still didn't cover ambulance rides, which cost me $800 a pop.
You have a seizure at work. Something changes. Maybe nobody says anything explicit, maybe the schedule shifts, maybe the role gets restructured. And then, suddenly, you are looking for work again, with a condition you now have to decide whether to disclose, in a job market where you may not be able to drive to the interview. All while 100+ people are ready and waiting to take your role.
(Let's maybe take a moment to sit with the stress this creates for those with epilepsy. You've been promised that killer promotion one moment, and the next moment, your teammates are uncomfortable being in a meeting with you.)
More than a quarter of people with epilepsy are unemployed, a rate more than twice the national average, and higher than seizure control alone would predict. Among people whose seizures are not controlled, estimates run to five times the national average, and in some studies as high as 50 percent. Reported unemployment rates for people with epilepsy range from 25 to 69 percent, and the high school graduation rate has been reported at 64 percent against a national average of 82 percent.
That last one was crazy to me. That last one upset me.
Universal healthcare does one genuinely important thing here, and it is worth stating plainly before the criticism. It severs the link between employment and coverage. For a condition that attacks employment, that breaks one loop: seizure, job loss, insurance loss, medication interruption, seizure. Every person reading this who has rationed a prescription during a coverage gap knows exactly how that loop closes.
But breaking the coverage link is not the same as fixing the income problem, and in the American debate we keep treating those as the same sentence. They aren't. And one country shows exactly what happens when you fix one and not the other.
Germany
Germany has had universal coverage since 1883, when German Chancellor Otto von Bismarck introduced the world's first social health insurance law, known as the Bismarck model. Nobody there goes bankrupt from an epilepsy monitoring admission. The diagnosis fight, the fight to get more than just a medication dosage increase, the "is this center in my plan" fight: none of it exists.
And a recent multicenter German study found that unemployment and early retirement rates among patients with epilepsy remain significantly higher than in the general population, with 18 percent of patients having retired early because of epilepsy. The researchers also found that occupational reintegration measures, which could return many patients to their usual work, are hardly used. That's complacency, and as Americans, we're guilty of it too. It needs to stop now.
Eighteen percent retired early. In a country with universal coverage.
Because what ended those careers was not a medical bill. It was a seizure at work, an employer's risk calculation, a driving restriction, a set of side effects that made an eight-hour shift untenable, and a stigma that universal insurance does not treat.
A systematic review of the economic impact of epilepsy reached the same conclusion from the other direction: out-of-pocket costs and productivity losses create substantial household burdens that health insurance may offset, but populations covered for the upfront costs of care still bear significant economic burden.
That sentence should be tattooed on the epilepsy community's talking points. Covered for the upfront costs. Still bearing significant burden.
France Got It Right
France does something the United States does not do in any program, and single-payer advocates almost never cite it, which is strange, because it is the closest thing to a model built for us.
Severe epilepsy is on France's ALD 30 list, the schedule of long-term conditions set by decree. Getting that designation is not just a coverage decision. It opens a bundle of rights: care related to the condition reimbursed at 100 percent of the covered rate, coverage of transport costs under certain conditions, and eligibility for long-term work leave exceeding six months.
Read that list again. Coverage, transportation, and income protection, attached to one designation, triggered by one form your doctor files.
The transport piece is real and specific: medical transport related to the condition is reimbursed at 100 percent of the ceiling, and even a 'non-exonerating ALD' gets transport reimbursed at 55 percent. It requires a medical prescription and proof that the patient meets defined impairment criteria.
Formulary protection also operates at the prescription level rather than through a national drug list. If a French physician writes "non substitutable" on the prescription, the pharmacist cannot dispense a generic instead, and cannot withhold direct billing on the grounds that the drug isn't generic. The rationale is explicitly pharmacological: generics contain the same active ingredients, but differences in excipients and formulation can shift the active concentration in metabolism by about 20 percent. Like any other condition, care decisions should remain between the doctor and the patient.
That is a healthcare system that has thought specifically about what epilepsy does to a person's life, rather than treating us as a line item in a chronic disease average.
Two honest caveats, because this is not a fairy tale.
Roughly 30 percent of French epilepsy patients on polytherapy who are eligible for 100 percent coverage do not actually receive it. Universal systems have take-up failures too, and a benefit you don't know to claim is a benefit you don't have.
More to the point, the protection is under attack right now. Épilepsie-France issued a public statement opposing proposed changes to coverage, arguing that 100 percent reimbursement must be maintained for patients whose daily lives are already constrained by heavy treatment regimens, frequent hospitalizations, and limited mobility.
So even in the system that gets this most right, epilepsy-specific protections still have to be defended. Universal coverage does not end the fight. But it would be a big step in a big, frustrating, heartbreaking, traumatic fight to make things right for everyone in our community.
No Money = Seizures
(I Wish I Were Being Dramatic)
Here is the finding that ties the economic argument to the clinical one, and it is the single most useful number in this piece.
In a claims analysis, a $10 increase in out-of-pocket spending was associated with a 16 percent decrease in the proportion of days covered, the standard measure of anti-seizure medication adherence. The investigators noted that policies imposing higher out-of-pocket costs on patients who have failed a particular treatment financially disincentivize those patients from taking the treatment that might actually work for them.
Ten dollars. Sixteen percent.
For most conditions, a sixteen percent drop in adherence is a slow-moving risk factor. For epilepsy, it is a seizure, and a seizure is a car crash, a suspended license, a hospital admission, an employer conversation.
This is why treating cost-sharing as a purely financial policy lever is wrong for us. For our condition, a copay is a clinical variable.
The CDC has already documented the downstream effects: adults with epilepsy are more likely than adults without it to report an inability to afford prescription medicine or specialty care, more likely to take less medication than prescribed in order to save money, more likely to be in families having trouble paying medical bills, and more likely to delay care because of insufficient transportation. A nationally representative analysis found that people with active epilepsy experience significantly higher rates of economic instability, food insecurity, and social isolation.
Food insecurity. In a chronic neurological condition. That is what the eighty-six percent looks like from the inside.
Sudden Blackout Believes in Universal Healthcare
But here are our additional must-haves that need to be brought to Congress.
One
Income protection has to be part of the conversation. France attaches long-term leave eligibility to the same designation that grants coverage. The United States splits this across Social Security, state disability programs, the ADA, and employer policy, with different definitions and different agencies, and asks a person mid-seizure-cluster to navigate all of them. Any universal coverage proposal that doesn't address income replacement is leaving the larger share of our burden untouched.
Two
Protect the drug. Medicare Part D currently designates anticonvulsants as one of six protected classes, meaning plans must cover all or substantially all of them and cannot impose step therapy on a patient already stabilized. That protection is specific to Part D. A national formulary is not obliged to carry it forward, and given the $10-to-16-percent finding, "file for an exception" is not an acceptable substitute. Demand explicit statutory language.
Three
Cover the ride. Medicaid must provide non-emergency medical transportation. Medicare is prohibited from paying for transportation. France covers it as part of the chronic illness designation. The United Kingdom's Public Health Insurance covers it based on assessed medical need, with a separate travel cost reimbursement scheme for low-income patients. A program modeled on Medicare inherits Medicare's exclusion by default, and we are a population that, in many cases, cannot legally drive to the appointment.
I would also love it if a doctor could give you a specific designation regarding your condition. That designation would then serve as automatic acceptance into many of these programs. Making things complicated for people with neurological conditions looking for solutions to problems they can't control is, well, bullsh*t.
Four
Protect the centers. Six states have no accredited epilepsy center at all. Eliminating insurance networks converts access from a contracting problem into a geography problem, which is real progress. But comprehensive epilepsy centers are low-volume and expensive, exactly the service line that gets squeezed under global budgeting.
Bottom Line
I am arguing that the epilepsy community keeps being invited into this debate on the wrong terms. We get asked whether we want our medical bills covered.
Our problem is that the same event, a seizure at work, produces a medical cost and an income loss simultaneously, and this country has built two entirely separate policy systems to handle them, neither of which talks to the other. Universal healthcare, in every version currently proposed, is a reform of one of those systems.
That is worth having. But it is not sufficient. We need to fight for our community, for ourselves, and for the young people being diagnosed today, whose lives this condition will or will not turn upside down.