Lawmakers advocate for awareness, research on Sudden Unexpected Death in Epilepsy

HARRISBURG, April 17 – State Reps. Lisa Borowski, D-Delaware and Craig Williams, R-Delaware, called on the House yesterday to pass their legislation that would raise awareness about Sudden Unexpected Death in Epilepsy (SUDEP) and enhance the accursacy of a SUDEP determination by coroners. 

The lawmakers’ two SUDEP bills are under consideration by the House Health Committee. H.B. 1871 would require a primary care provider who diagnoses a patient with epilepsy, or provides care to a patient that has been diagnosed with epilepsy, to provide the patient (and the patient’s guardian, if applicable) with information about SUDEP. H.B. 1872 would provide further instruction to coroners about when to list SUDEP as the cause of death when performing an autopsy on someone known to have epilepsy.

“For the past 16 months as a freshman legislator, I’ve spent a considerable amount of time talking to the neighbors I serve to understand their concerns, and how I can work on their behalf and initiate legislation to solve problems and make a positive impact on everyday lives,” Borowski said. “No meeting touched my heart more than the one I had with John and Colleen Hosbach…SUDEP is a condition that needs urgent attention, because we know very little about it.”

In cases of SUDEP, the person with epilepsy was otherwise healthy, and no other cause of death is found in the autopsy. It often occurs at night or when the person is sleeping, leaving any seizures unwitnessed. Possible causes include interruption to breathing, heart rhythm, and/or brainstem function.

“When Mrs. Hosbach contacted my office to share Morgan’s story, I knew we needed to take immediate action,” Williams said. “Morgan passed shortly after having a seizure. Had the family known of the risk of Sudden and Unexpected Death in Epilepsy, they might have been in a position to save her. Rep. Borowski and I quickly teamed up to offer a non-partisan solution. Our legislation is based upon model law in other states, which takes affirmative action to warn families about this danger. This isn’t a time for a taskforce or hearings. It is time for action. I hope our legislation can bring some moment of comfort to the Hosbach family and the many families like them.”

The lawmakers were joined by family members of Morgan Rose Hosbach, a young woman from Delaware County who died from SUDEP in 2022 at age 23. Morgan’s epilepsy was well managed and under supervision by her healthcare team, but neither she nor her family were told about SUDEP or its risk factors at any point after she was diagnosed with epilepsy at age three, according to family members.

“My reason for being here today is that at no time during any of her appointments did any doctor make us aware of SUDEP or ways to mitigate the risk,” said Colleen Hosbach, Morgan’s mother. “It should be no different than any other diagnosis in which doctors disclose all the potential risks.”

“Every day we wake up and say to ourselves, ‘I wish we knew.’ What could we have done if we were educated about SUDEP?” said John Hosbach, Morgan’s father. “These bills are critical to the research and future of bringing SUDEP awareness to our families.”

According to Andrea Zonneveld, director of community education and outreach for the Epilepsy Association of Western & Central PA, one in 4,500 children and one in 1,000 adults with epilepsy will pass away from SUDEP.

“Families and patients deserve to know that people with epilepsy have a risk of SUDEP,” Zonneveld said.