Opinion: A CT bill would put epilepsy patients at risk. I watched it happen to my mother

Hartford Courant – Monday, March 30, 2026
By James Hart

James Hart is executive director, Epilepsy Foundation of Connecticut.

I was three years old when my mother had a stroke. It took her nearly a year to relearn how to walk and talk. In the years that followed, epilepsy became a permanent part of our lives. She could no longer work or drive, and I grew up watching her navigate a world that was not built with her in mind.

I still remember a day when I had friends over for a playdate and my mom had a breakthrough seizure. What I remember most is the look on her face afterward. She was not frightened. She was embarrassed, worried that other parents would not trust her to keep their kids safe.

That seizure was not the result of a doctor’s decision. It happened because a change to her Medicaid coverage forced a change to her medication. My mother had spent years calibrating the right drugs at the right doses. One disruption was all it took to send her into a seizure requiring an ambulance and weeks of recovery. I called 911 for her more times than I can count.

She passed away from Sudden Unexpected Death in Epilepsy, known as SUDEP, about a week before my thirteenth birthday. My uncle Phil, who also had epilepsy and relied on Medicaid, passed away recently after years of struggling to afford his medications. He put prescriptions on credit cards and waited on tax refunds to cover the balance, managing copay gaps and medication side effects on a minimal fixed income. These are the most vulnerable among us.

Their stories are why I became executive director of the Epilepsy Foundation of Connecticut, and why I feel compelled to speak plainly about House Bill 5040, part of the governor’s healthcare budget implementer. The bill proposes creating a comparative effectiveness review process for prescription drugs on the Medicaid formulary. Healthcare costs are a legitimate concern, but for the approximately 36,000 Connecticut residents living with epilepsy, many of whom depend on Medicaid, the way this bill is written poses a serious threat.

Many comparative effectiveness frameworks rely on a metric called the quality-adjusted life year, or QALY, which assigns numerical value to health outcomes. The problem is that people with disabilities and chronic conditions start with a lower QALY score by definition. The math will always make their care look more expensive than it is worth. Lifesaving treatments are labeled as not cost-effective. Medications that prevent seizures and preserve independence get deprioritized, not because they do not work, but because the model does not fully account for the person they are working for.

Epilepsy treatment is not one-size-fits-all. Patients and care teams often spend years finding the precise combination of medications, doses, and timing that controls seizures. A formulary change driven by a blunt cost metric, rather than individual clinical need, can undo that work in an instant. HB 5040 currently includes no clear protections against this. There are no provisions accounting for the complexity of conditions like epilepsy, and no safeguards against the known inequities in QALY-based frameworks. Those are not minor technical gaps. For the most vulnerable patients, they represent a foreseeable harm.

I respect that Connecticut lawmakers face genuine pressure to reduce healthcare costs. But cost containment cannot come at the expense of those already most at risk. My mother deserved a system that protected her access to the care that kept her alive.

My uncle Phil deserved one that did not force him to choose between his prescriptions and his credit card balance. I urge lawmakers to reject the comparative effectiveness review provisions of HB 5040, or at minimum amend it with meaningful protections for patients with complex chronic conditions. The 36,000 Connecticut residents living with epilepsy deserve a system that sees them as individuals, not line items. They have already paid a high enough price.

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