What's happening
This bill requires newborns to be tested for spinal muscular atrophy and mandates public education about the disease and available resources.
Why it matters
Earlier detection of spinal muscular atrophy (SMA) through mandatory newborn screening can significantly improve health outcomes. , as timely diagnosis allows for quicker intervention and access to treatments that can slow or prevent progression of the disease.
Mandating public education about SMA ensures that expectant parents and families are better informed about symptoms, risks, and available resources. , which may reduce fear, uncertainty, and stigma, and help families navigate care options more effectively.
Hospitals and healthcare providers will be required to distribute up-to-date information on SMA. , enhancing support networks for affected families and potentially increasing awareness in the broader community about rare genetic disorders.
The Department of Health is empowered to issue rules for implementing these changes. , allowing for flexibility in updating educational materials and testing protocols as medical knowledge and treatment options evolve.
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Who cares
Hospitals and other institutions caring for newborns
The bill would require spinal muscular atrophy testing for infants in their care who are 28 days old or younger.
New York State Department of Health
The department would have to develop and publish spinal muscular atrophy educational materials online and distribute information on birth defects, treatment and family resources to hospitals performing the testing.
Women who may become pregnant, expectant parents and parents of infants
The bill would provide information about spinal muscular atrophy risks, diagnosis, treatment and resources for families of affected children.
Headline styles
Test Newborns for SMA
Plain English, a few words. Used as the page title.
Sponsors
Senator · Senate District 62
No co-sponsors yet.
History
- Reported and committed to finance
- Referred to health
Full text
2 pagesUnderlined is new[Struck] is removedOfficial text on nysenate.gov ↗
STATE OF NEW YORK
7048
IN SENATE (Prefiled)
January 3, 2018
Introduced by Sen. ORTT -- read twice and ordered printed, and when printed to be committed to the Committee on Health
AN ACT to amend the public health law, in relation to the testing of newborns for spinal muscular atrophy and public education thereon
The People of the State of New York, represented in Senate and Assembly, do enact as follows:
Section 1. Subdivision (a) of section 2500-a of the public health law, as amended by chapter 184 of the laws of 2013, is amended to read as follows:
(a) It shall be the duty of the administrative officer or other person in charge of each institution caring for infants twenty-eight days or less of age and the person required in pursuance of the provisions of section forty-one hundred thirty of this chapter to register the birth of a child, to cause to have administered to every such infant or child in its or his care a test for phenylketonuria, homozygous sickle cell disease, hypothyroidism, branched-chain ketonuria, galactosemia, homocystinuria, critical congenital heart defects through pulse oximetry screening, spinal muscular atrophy, and such other diseases and conditions as may from time to time be designated by the commissioner in accordance with rules or regulations prescribed by the commissioner. Testing, the recording of the results of such tests, tracking, follow-up reviews and educational activities shall be performed at such times and in such manner as may be prescribed by the commissioner. The commissioner shall promulgate regulations setting forth the manner in which information describing the purposes of the requirements of this section shall be disseminated to parents or a guardian of the infant tested.
§ 2. The public health law is amended by adding a new section 2500-1 to read as follows:
§ 2500-1. Spinal muscular atrophy public education. 1. The department shall develop and publish informational materials for women who may become pregnant, expectant parents and parents of infants regarding:
(a) the incidence of spinal muscular atrophy;
(b) the risks of spinal muscular atrophy;
EXPLANATION--Matter in italics (underscored) is new; matter in brackets
[ ] is old law to be omitted.
LBD13373-01-7
S. 7048 2
(c) birth defects caused by spinal muscular atrophy;
(d) methods of diagnosing spinal muscular atrophy; and
(e) available methods of treating spinal muscular atrophy and resources available for families of children born with spinal muscular atrophy.
2. The department shall publish the information required pursuant to subdivision one of this section on its internet website, and distribute information regarding birth defects, treatment and resources to all hospitals performing spinal muscular atrophy testing pursuant to section twenty-five hundred-a of this title.
3. The department may promulgate rules to implement the purposes of this section.
§ 3. This act shall take effect immediately; except that section one of this act shall take effect on the one hundred twentieth day after it shall have become a law; provided, however, that effective immediately, the addition, amendment and/or repeal of any rule or regulation necessary for the implementation of section one of this act on its effective date are authorized and directed to be made and completed on or before such effective date.
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 the testing of newborns for spinal muscular atrophy and public education thereon
Purpose or general idea of bill
This legislation requires that a test be undertaken on newborns for spinal muscular atrophy and that a spinal muscular atrophy public educa- tion program be undertaken.
Summary of specific provisions
Section 1 amends Subdivision (a) of section 2500a of the public health law to add spinal muscular atrophy to the list of tests performed on an infant prior to 28 days.
Section 2 adds a new subdivision 2500-1 by creating a spinal muscular atrophy public education program.
Section 3 is the effective date.
Justification
Spinal Muscular Atrophy is a disease that affects motor nerve cells of the spinal cord, taking away an individual's ability to walk, eat and breathe. It is the NUMBER ONE genetic cause of death for infants. Impor- tantly, In December of 2016 the first ever treatment for SMA was approved, making this disease treatable making early detection even that more important. By requiring screening for newborns this genetic disease can be identified as quickly as possible and death or degradation of quality of life can be prevented.
Prior legislative history
New Bill
Fiscal implications
None.
Effective date
Immediately, except for section one which will take effect 120 days.
Summaries, headlines and scores are AI-generated from the official bill text. How we score bills. Source: NYS Open Legislation.