Medication access¶
Status: data published September 2026.
The gap¶
For most conditions a missed dose is a nuisance. For epilepsy, going without medicine for a stretch is what causes harm. In a study of 33,658 adults with epilepsy on Medicaid, the periods when people were not taking their medicine carried about three times the death rate, one and a half times the emergency visits, and twice the rate of injury-causing crashes (Faught et al., Neurology 2008, PMID 18565827). A single forgotten dose is a different thing. A 2026 study of adults with frequent, drug-resistant seizures found that an occasional missed dose did not measurably raise seizure risk the next day (Goldenholz et al., Annals of Neurology 2026); the authors still stress taking medicine as prescribed. Nationally, among adults with active epilepsy, about 13 percent say they could not afford their prescription and about 9 percent skip doses to save money. Adults without epilepsy report about 6 percent on both of those questions (CDC, MMWR 2022;71(21), survey years 2015 and 2017). Two other things stand between a Minnesota family and the pill: supply problems (FDA lists discontinuations of several oral seizure products, and a shortage of the hospital IV form of valproate open since 2020) and distance. Minnesota lost 13 percent of its community pharmacies from 2009 to 2024, and about one in five residents now lives in an area with low or limited pharmacy access.
What the data shows¶
We pulled Minnesota Medicaid antiseizure prescriptions from 2019 through early 2026 from the federal State Drug Utilization Data. CMS hides any cell under 11 prescriptions, so the totals run slightly low, and gabapentin, pregabalin and clonazepam are left out because most of their use is for other conditions. The 2026 figures cover only part of the year.
| 2025 | Value |
|---|---|
| Antiseizure prescriptions paid by Minnesota Medicaid | about 335,000 |
| Total reimbursed | $44 million |
| Average cost, lamotrigine (most common) | $24 per prescription |
| Average cost, nasal diazepam (Valtoco) | $1,444 |
| Average cost, cannabidiol (Epidiolex) | $3,739 |
| Average cost, vigabatrin | $13,724 |
Clobazam prescriptions fell 34 percent between the first and second quarters of 2024. We first read that as a shortage, and we were wrong. We checked both national shortage trackers as they stood during 2024, using archived snapshots of the FDA list and the ASHP list, and neither recorded a clobazam shortage that year. The only clobazam entry anywhere is one company discontinuing its 20 mg tablet. Fifteen other seizure medicines fell by a fifth or more in the same quarter, and a shortage hits one drug at a time. Minnesota's Medicaid renewals after the pandemic ran through mid-2024, which fits the pattern better. Medicaid covers only part of the Minnesotans with epilepsy; commercial claims are held by MDH and we have asked for them.
What a Minnesota family actually pays¶
Medicaid prices are not what a working family sees. In September and October 2026 we pulled the federal drug pricing file, checked which seizure medicines have a generic, priced the twelve most-enrolled Minnesota individual-market insurance plans, and read the state's own claims data. Four things stand out.
Six seizure medicines have no generic version: Epidiolex, Fintepla, Xcopri, Ztalmy, Diacomit and nasal midazolam (Nayzilam). Other products, such as Valtoco nasal diazepam, have no generic in their own form. In Minnesota Medicaid in 2025 the six were 1.5 percent of seizure prescriptions and 32 percent of the spending, before manufacturer rebates.
Where a generic does exist, the gap is enormous. A month of generic clobazam costs a pharmacy about $15. The brand, Onfi, costs about $1,795. Generic levetiracetam is $4.43 against $595 for Keppra. A controlled trial that switched adults between two very different generic versions of lamotrigine found no detectable difference in drug levels or seizures (EQUIGEN, Lancet Neurology 2016, PMID 26875743). A change in pill color between refills did make people somewhat more likely to stop filling the prescription (Kesselheim et al., JAMA Internal Medicine 2013, PMID 23277164).
Minnesotans on commercial insurance pay far more than people on public programs. From the Minnesota All Payer Claims Database for 2022: $18.48 out of pocket per fill on a commercial plan, against $9.30 on Medicare and $1.31 on Minnesota Health Care Programs (Medical Assistance and MinnesotaCare). For several expensive drugs the median payment is $0.00 while the average is far higher: $96 a fill for cenobamate, $122 for cannabidiol, $228 for fenfluramine and $267 for eslicarbazepine. That is the deductible pattern. Across a year, commercial members taking fenfluramine paid $1,822 on average, eslicarbazepine $1,460, and cannabidiol $1,073. Those three averages rest on small numbers of people, 12, 13 and 71 respectively, and the database holds roughly 40 percent of Minnesota's commercial market, so read them as the shape of the problem rather than a statewide count.
Prices keep rising, and the state knows it. Minnesota's drug price transparency law requires manufacturers to report large increases. The state's public files show at least 50 on seizure drugs, effective 2022 to 2025; MDH withheld other reports over trade secret claims. Sabril rose about 15 percent in twelve months, to $20,182 for a bottle of 100 tablets. Onfi rose about 24 percent over three January increases. In each of the three annual reports we tabulated, anticonvulsants were a top-ten class by number of price increase filings, and the median two-year increase for the class went from 15 percent to 31 percent, though the number of products behind that median also fell. The reasons manufacturers give are boilerplate, and in two cases the reason was withheld as a trade secret.
Two 2026 bills (HF 3652 and SF 3786) would have added epilepsy to Minn. Stat. 62Q.481, which since January 2025 has capped what a Minnesotan pays for diabetes, asthma and severe allergy medicine at $25 a month, for plans that state law regulates. The Department of Commerce, using claims from 2021 to 2024, projects that people filling an epilepsy drug will pay an average of $44.71 in cost sharing in each month they fill one in 2027, with $17.35 of that above the $25 line. People filled in about six months of the year on average, so this is not a figure for every month. Spread across everyone with private coverage, the change costs about four cents per member per month. Both bills died with this legislature and would need to be reintroduced in 2027.
EDAN requested and received from the Minnesota Department of Health the summary data underlying the averages made available by the Minnesota Department of Commerce. In 2024, 4,341 commercially insured Minnesotans with epilepsy filled a prescription for a first-line seizure medication. In 12 percent of the months with a filled prescription, out-of-pocket payment exceeded $25 per 30-day supply, by $55 on average. Total out-of-pocket payment in excess of $25 per 30-day supply equaled $385,732 that year. For comparison, in 2021, out-of-pocket payment exceeded $25 per 30-day supply in 14.6 percent of months. These summary estimates were calculated using the Minnesota All Payer Claims Database (MN APCD), which does not receive claims from most self-insured employer plans and includes data representing about 40 percent of the commercial market, so the true number of people affected is larger. The drug list MDH used focused on first-line therapies and excluded several newer add-on drugs, among them cannabidiol, fenfluramine and cenobamate, so the amounts above $25 are a floor. MDH did not count how many different people went over $25 in a year, only how many member months did.
| 2021 | 2022 | 2023 | 2024 | |
|---|---|---|---|---|
| Members with an epilepsy diagnosis | 6,964 | 7,156 | 6,691 | 6,401 |
| Filled a first-line seizure prescription | 4,630 | 4,749 | 4,434 | 4,341 |
| Months over $25 per 30-day supply | 14.6% | 13.7% | 13.4% | 12.0% |
| Patient cost sharing | $1.21M | $1.18M | $998K | $985K |
| Amount above $25 | $537K | $509K | $396K | $386K |
Minnesota Department of Health, Health Economics Program, MN APCD Extract 29. Commercial members with 12 months of medical and pharmacy coverage and an epilepsy or seizure diagnosis. The twelve first-line drugs MDH counted are brivaracetam, carbamazepine, lacosamide, lamotrigine, levetiracetam, oxcarbazepine, perampanel, phenobarbital, phenytoin, topiramate, valproic acid and zonisamide. "Months over $25" is the share of months with a fill in which the patient paid more than $25 per 30-day supply. Most self-insured (ERISA) plans are not included.
Sources: Minnesota Department of Health (All Payer Claims Database and prescription drug price transparency reports); CMS National Average Drug Acquisition Cost; FDA Orange Book; 2026 plan benefit summaries and formularies from HealthPartners, Medica, UCare and Blue Plus (Blue Cross and Blue Shield of Minnesota); plan enrollment from the CMS rate review file for 2026.
Explore: what a $25 cap would change, plan by plan¶
We read the 2026 benefit summary and drug list of twelve Minnesota plans, the three with the most members at each of the four largest individual-market carriers, and priced the twenty seizure medicines most prescribed to commercially insured Minnesotans against each, along with five costly brands. Together they held about 30 percent of the people in that market. Pick a medicine to see what a member pays today and what the cap would leave. For the common generics the cap changes little, because most plans already charge $25 or less. The brand drugs split two ways: on some plans the cap takes hundreds of dollars off the month, and on others the drug is missing from the plan's list, where a cap on cost sharing does not reach it.
Explore: which drugs, and what they cost¶
Click a drug name in the legend to show or hide it. The most common drugs are cheap generics. The drugs a child with hard-to-control epilepsy needs are the expensive ones.
Check yourself¶
1. Six seizure medicines have no generic. What share of Minnesota Medicaid seizure-drug spending did they take in 2025?
About 32 percent, before manufacturer rebates, while making up 1.5 percent of the prescriptions.
2. In 2024, in what share of months did commercially insured Minnesotans filling a first-line seizure prescription pay more than $25?
12 percent, down from 14.6 percent in 2021, in the All Payer Claims Database counts MDH ran for EDAN. The database leaves out most self-insured employer plans.
3. Why does a broad drop across many drugs in one quarter probably not mean a shortage?
Shortages hit one molecule. A drop across unrelated drugs at once points to fewer people enrolled or late reporting. In 2024 Minnesota's Medicaid renewals fit that pattern.
What we are doing this year¶
- Keeping this dashboard current each quarter and flagging shortage signals.
- Mapping distance from every school district to the nearest retail pharmacy. First pass, September 2026: 15 districts are more than 15 miles from any retail pharmacy, and 14 of those also post no findable seizure plan. Grygla, Red Lake, Floodwood, and Nett Lake are farthest. Look up any district in the Distance to Care Lookup.
- Supporting reintroduction of the HF 3652 / SF 3786 cap in the 2027 session. It would limit what a patient pays for epilepsy drugs to $25 a month in state-regulated plans, the same protection diabetes and asthma already have. Actuaries from Actuarial Research Corporation, in an evaluation done for the Department of Commerce, priced it at four cents per member per month. Students are ready to testify when a new bill is heard.
Who uses this data¶
The cost and claims numbers on this page are meant for the legislators carrying the cost-sharing cap and for the Epilepsy Foundation of Minnesota. Families who need help paying for medicine now should contact the Epilepsy Foundation of Minnesota.