What's happening
This bill requires healthcare practitioners to provide epilepsy patients with written information about sudden unexpected death in epilepsy and related support resources.
Why it matters
Patients with epilepsy will receive standardized, evidence-based information about the risk of sudden unexpected death in epilepsy (SUDEP), which is often under-discussed in clinical practice. This means more patients and families will be aware of a serious, but preventable, risk.
Healthcare practitioners (doctors, nurse practitioners, physician assistants) are now explicitly responsible for providing both educational materials and support resource contacts, increasing accountability and consistency in patient care. This could lead to more informed treatment decisions and better preparation for patients and caregivers.
The Department of Health must ensure that all provided information is culturally and linguistically appropriate, making crucial health information more accessible to New Yorkers of diverse backgrounds. This focus helps reduce disparities in epilepsy care and education.
Epilepsy-related nonprofits can request to have their materials included on the Department of Health’s website, potentially expanding the reach of support services and educational resources available to patients and their families. This creates a more robust network of support and information sharing.
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Who cares
Headline styles
Inform Epilepsy Patients on Risks
Plain English, a few words. Used as the page title.
Sponsors
3 Co-sponsors
History
- Committed to rules
- Advanced to third reading
- 2nd report cal.
- 1st report cal.420
- Print number 5397a
- Amend and recommit to health
- Referred to health
- Referred to health
Companion bill
The same bill in the other chamber. A bill becomes law when one version passes both houses and the governor signs it, so either number can carry it.
Epilepsy Death Risks Disclosure
Assembly Floor Calendar · Sponsor Harvey Epstein
Full text
2 pagesUnderlined is new[Struck] is removedOfficial text on nysenate.gov ↗
STATE OF NEW YORK
5397--A
2019-2020 Regular Sessions
IN SENATE
April 29, 2019
Introduced by Sens. HOYLMAN, CARLUCCI, RIVERA, SALAZAR -- read twice and ordered printed, and when printed to be committed to the Committee on Health -- recommitted to the Committee on Health in accordance with Senate Rule 6, sec. 8 -- committee discharged, bill amended, ordered reprinted as amended and recommitted to said committee
AN ACT to amend the public health law, in relation to information provided to patients regarding sudden unexpected death in epilepsy
The People of the State of New York, represented in Senate and Assembly, do enact as follows:
Section 1. Subdivision 2 of section 2995 of the public health law is amended by adding two new paragraphs (f) and (g) to read as follows:
(f) "Health care practitioner" shall mean a physician, nurse practitioner, or physician assistant licensed or certified pursuant to title eight of the education law.
(g) "Sudden unexpected death in epilepsy" shall mean sudden, unexpected death in patients with epilepsy, with or without evidence of a seizure.
§ 2. The public health law is amended by adding a new section 2997-f-1 to read as follows:
§ 2997-f-1. Provision of information relating to sudden unexpected death in epilepsy. 1. Any health care practitioner who is treating a patient for epilepsy, who has primary responsibility for the treatment and care of the patient, shall provide such patient with the following written information:
(a) current and evidence-based information about sudden unexpected death in epilepsy risk factors and conditions that has been reviewed by one or more accredited medical experts and national epilepsy organizations; and
(b) contact information for nonprofit organizations that provide information and support services for epilepsy conditions.
EXPLANATION--Matter in italics (underscored) is new; matter in brackets
[ ] is old law to be omitted.
LBD11201-05-0
S. 5397--A 2
2.(a) The commissioner shall provide written information to health care practitioners necessary to implement subdivision one of this section, and shall post such information on the department's website.
(b) The commissioner shall ensure that such information is culturally and linguistically appropriate for all recipients.
(c) Any local or national organization that provides education or services related to epilepsy conditions may request that the commissioner include such organization's informational material and contact information on the department's website. Once such a request is made, the commissioner may add the information to the department's website at his or her discretion.
§ 3. This act shall take effect on the ninetieth day after it shall have become a law.
Reflowed for reading: line numbers and page breaks removed. Cite the official text.
Sponsor's memo
Title of bill
An act to amend the public health law, in relation to information provided to patients regarding sudden unexpected death in epilepsy
Purpose or general idea of bill
The bill would require health care practitioners to provide patients with epilepsy with current and evidence-based information about SUDEP risk factors and conditions, as well as contact information for nonpro- fit organizations that provide support services for epilepsy conditions.
Summary of specific provisions
Section 1 of the bill amends section 2995 of the Public Health Law (Structure and definitions) by adding definitions for "health care prac- titioner" and "Sudden unexpected death in epilepsy."
Section 2 of the bill adds a new section 2997-f-1 to the Public Health Law (Provision of information relating to sudden unexpected death in epilepsy) to require health care practitioners who are treating patients for epilepsy to provide them with information regarding sudden unex- pected death in epilepsy risk factors and conditions, and with contact information for nonprofit organizations that provide support for epilep- sy conditions.
Section 2 also requires the Department of Health to provide culturally and linguistically appropriate written information to health care prac- titioners necessary to implement the above requirement, and to post such information on the Department's website. It would also allow nonprofit organizations to provide the Department with resources and contact information which may also be added to the website.
Section 3 of the bill is the effective date.
Justification
According to the Centers for Disease Control (CDC), sudden unexpected death in epilepsy (SUDEP) is the cause of epilepsy-related mortality at an annual rate of 1.16 cases per every 1,000 people with epilepsy. Currently, SUDEP is not widely discussed between doctors and their patients, yet the best way to prevent SUDEP is to reduce the number of seizures suffered by a person with epilepsy as much as possible. To be able to reduce their number of seizures, a person with epilepsy needs to know their triggers for seizures, take their medicine on time, and know the risk factors for SUDEP to better understand and plan for the future.
This legislation would require health care practitioners to provide patients they are treating for epilepsy with current and evidence-based information about SUDEP and to connect them with nonprofit organizations that can offer further assistance and support. It would also require the Department of Health to provide information to health care practitioners to assist with compliance and to post such information on its website.
Legislative history
2019: S.5397 (Hoylman) - Died in Health
Fiscal implications
To be determined.
Effective date
This act shall take effect on the ninetieth day after it shall have become a law.
Summaries, headlines and scores are AI-generated from the official bill text. How we score bills. Source: NYS Open Legislation.