Lincoln Abeyta was 10 years old when he died in August 2024. His parents used a seizure monitoring system that alerts after 15 seconds of movement. The seizure lasted about 10.
His name is now attached to a Colorado statute that took effect Aug. 12, and the problem it addresses is one most people never think about: what gets written on a death certificate when someone with epilepsy dies suddenly and an autopsy finds nothing.
Often the answer is nothing useful. “Too often, death certificates list causes as ‘unknown,’” Brian Abeyta, Lincoln’s father, told lawmakers during a Senate recognition of Purple Day in March.
A Death That Leaves No Physical Trace
Sudden unexpected death in epilepsy, known as SUDEP, is defined by what investigators cannot find. It is a sudden, non-traumatic, non-drowning death in a person with epilepsy where a postmortem examination turns up no anatomical or toxicological cause. It frequently happens during sleep and is frequently unwitnessed.
Incidence clusters around 1.2 per 1,000 person-years among adults with epilepsy and about 0.22 per 1,000 in children, according to a published review, rising to roughly 6.7 per 1,000 in drug-resistant epilepsy. SUDEP is the leading cause of epilepsy-related death in adults. The CDC frames the same numbers differently, telling families that about one in 1,000 adults with epilepsy may die from SUDEP in a given year.
Those figures come with a caveat researchers repeat constantly. Relying only on death certificates likely undercounts SUDEP, partly because many practitioners are unfamiliar with it and partly because autopsy findings are nonspecific.
Epilepsy is not rare. The Centers for Disease Control and Prevention estimated that 3.4 million Americans had active epilepsy in 2015, roughly 3 million adults and 470,000 children, with about 56,800 of them in Colorado. Sen. Iman Jodeh, who sponsored the measure, told the chamber that she is one of roughly 60,000 Coloradans living with the condition.
The mechanism behind SUDEP remains unsettled. The prevailing account holds that a generalized tonic-clonic seizure triggers a centrally mediated collapse of cardiorespiratory function, ending in apnea and cardiac arrest. Orexin, adenosine, and serotonin signaling have all been explored as drug targets. None of it leaves a visible mark for a pathologist to find.
What Colorado Actually Requires
Senate Bill 26-077 is short. Beginning July 1, 2027, a death certification professional must ensure they are aware of the most recent epilepsy-related death certification recommendations from a nationally recognized and reputable organization associated with their medical practice focus, or from the National Association of Medical Examiners.
By June 1, 2027, the state health department must electronically notify all registered users of the Colorado vital events system of the requirement.
The operative provision is the second one. If a death certification professional determines a death is consistent with known or suspected SUDEP, the signed act requires the certificate to identify epilepsy as a contributing or suspected cause of death. The department may also publish online guidance for clinicians and certifiers. The statute has its own short title: Lincoln’s Law.
Jodeh carried it in the Senate. Reps. Lindsay Gilchrist and Katie Stewart carried it in the House. It passed the Senate 33 to 2 and the House 57 to 6 and was signed on April 20.
The Bill Got Smaller on Its Way Through
Worth noting for anyone tracking what the state committed to: the version introduced in January was broader. It would have required a statewide public health campaign on epilepsy and its mortality risks, mandated reporting of all epilepsy-related deaths to a SUDEP registry, and required death investigations to determine whether a death was a direct result of a seizure or epilepsy.
Those elements did not survive. What passed is essentially an awareness-and-documentation requirement, and the final fiscal note records no appropriation.
That narrowing matters for what the law can accomplish. Better death certificate coding improves the data available to researchers and gives families an answer where they previously got none. It does not, by itself, fund a registry, launch an awareness campaign or change how any patient is treated.
Testimony in support came from the Epilepsy Foundation of Colorado and Wyoming, from Children’s Hospital Colorado, and from Lincoln’s parents, Traci and Brian Abeyta, who have pushed for the change since their son’s death.
Why Counting Matters in a Condition Like This
Public health responds to what it measures. If SUDEP is systematically recorded as an unknown cause, it appears smaller than it is in mortality statistics, which affects research funding, clinical attention, and the likelihood that a neurologist raises the topic with a family.
There is also the counseling gap. Advocates argue that families who know the risk exists can at least ask about seizure control, nighttime monitoring, and medication adherence.
The most consistent finding across SUDEP research is that frequent generalized tonic-clonic seizures raise risk. Long duration of epilepsy, nighttime seizures, and certain genetic syndromes also appear on risk lists. Better seizure control is the intervention with the most support.
Whether Colorado’s approach spreads will depend partly on whether it produces usable data. A documentation mandate with no funding and no registry is a modest instrument, and its effect will show up slowly, in mortality statistics rather than in headlines.
None of this substitutes for medical advice. People with epilepsy who have questions about their own risk, or about whether their seizures are adequately controlled, should raise them with a neurologist rather than adjusting anything on their own.
Key Questions Answered
What does Colorado’s new law require?
When a death certification professional determines a death is consistent with known or suspected SUDEP, the death certificate must list epilepsy as a contributing or suspected cause.
When does it start?
The act took effect on Aug. 12, 2026. The certification requirements begin July 1, 2027, with state notification to certifiers due by June 1, 2027.
What is SUDEP?
A sudden, non-traumatic, non-drowning death in a person with epilepsy where autopsy finds no anatomical or toxicological cause. It often occurs during sleep and is often unwitnessed.
How common is it?
Estimates cluster near 1.2 per 1,000 person-years in adults with epilepsy and rise substantially in drug-resistant epilepsy. Researchers believe death certificate data undercount it.
Who is most at risk?
Risk is highest among people with frequent generalized tonic-clonic seizures, long-standing epilepsy, and poorly controlled seizures.
Does the law change medical care?
No. It governs documentation and certifier awareness, not treatment.
What was removed from the original bill?
Provisions for a statewide awareness campaign, a SUDEP registry and expanded death investigation requirements were not in the final version.
Leave a Reply