Senator Brad Hoylman
Legislative Office Building
Albany, NY 12247 | Senator Joseph P. Addabbo, Jr. Senator Allessandra Biaggi Legislative Office Building Legislative Office Building | Senator Jabari Brisport Senator Cordell Cleare Legislative Office Building Legislative Office Building |
The American Epilepsy Society (AES) is the primary national professional society for epilepsy specialists. Our nearly 5,000 members are professionals engaged in the understanding, diagnosis, study, prevention, treatment, and cure of epilepsy. Our membership includes physicians, advanced practice providers, allied health professionals, and researchers spanning the basic, translational, and clinical areas.
We are writing to you to register our extreme concern regarding Senate Bill S67A/Assembly Bill A3298. The bill would require health care practitioners to provide patients with epilepsy at elevated risk for Sudden Unexpected Death in Epilepsy (SUDEP) with current and evidence-based information about SUDEP risk factors and conditions, as well as contact information for nonprofit organizations that provide support services for epilepsy conditions. While we appreciate the intent of this measure, the American Epilepsy Society is opposed to this bill.
AES has a position statement supporting the appropriate counseling of people with epilepsy on the risks of Sudden Unexpected Death in Epilepsy (SUDEP). AES encourages counseling and offers guidance for providers through an evidence-based approach to counseling patients, families, and caregivers about the risk of SUDEP.
It is our position that SUDEP counseling should be individualized within the patient-provider relationship, with consideration of the patient’s epilepsy type, preferences, and psychosocial circumstances. The American Academy of Neurology (AAN)/AES practice guideline on SUDEP is the basis for our guidance. Our counseling position statement lists very specific scenarios in which SUDEP counseling is advised.
According to the Centers for Disease Control and Prevention, SUDEP refers to deaths in people with epilepsy that are not caused by injury, drowning, or other known causes. Studies have suggested that they are extremely rare – current estimates are 1.16 cases in every 1,000 people with epilepsy, although estimates vary. However, SUDEP may account for less than half of all epilepsy-related deaths, with status epilepticus, accidents, drownings, and suicide among the most common epilepsy-related causes of death. The main risk factors for SUDEP are uncontrolled or frequent seizures,
particularly generalized convulsive (tonic-clonic or grand mal) seizures. The most important step to reduce the risk of SUDEP is for patients to take their seizure medicine as prescribed and if seizures continue to consider seeing an epilepsy specialist.
AES appreciates that the sponsors of this measure have narrowed the parameters from earlier versions of the bill. However, serious issues remain, not the least of which is legislating specifics of provider-patient communication and dictating what information the health care practitioner is required to provide. While we appreciate that the expectation of “evidence-based information” has been added, the measure goes on to note this may be obtained from “any local or national organization” that requests to have information included.
Further section 2d notes that the commissioner will provide guidance to health care practitioners on how to determine risk, an additional interference, and potential obstruction of the physician’s medical judgment.
Finally, the added section 3 appears to put a physician’s license at risk for failing to give this information, presumably in the form and at a time mandated by the commissioner. It is not clear how a warning would be initiated, who makes a judgment on its validity, and what happens on a second ‘offense.’
Physicians already have every incentive to ensure their patient receives the proper treatment to manage this difficult condition. Rather than attempting to legislate when, what, and how a physician must communicate with an epilepsy patient about the specific risk of SUDEP, focus would be better applied to assuring patients have access to specialist care, ready access to their prescribed medication, and adequate supporting services for the psychosocial and other comorbidities of epilepsy.
For all the reasons above, the American Epilepsy Society opposes this legislation.
If we may be of further assistance please contact our Executive Director, Eileen Murray, at emurray@aesnet.org or 312-883-3800.
Sincerely,
R. Edward Hogan, MD, FAES
2022 President, American Epilepsy Society
Director, Adult Epilepsy Section
Professor of Neurology
Washington University in St. Louis