What's happening
This bill requires newborn testing and public education for spinal muscular atrophy, including informational resources for families and hospitals.
Why it matters
Early detection of spinal muscular atrophy (SMA) through mandatory newborn screening can significantly improve health outcomes. , as early intervention and treatment are critical for this progressive and often fatal neuromuscular disorder.
Providing comprehensive educational resources to prospective and new parents can empower families to recognize early signs and access support. , helping reduce anxiety and increase preparedness if their child is affected by SMA.
Hospitals will be required to distribute up-to-date information about SMA, its risks, diagnosis, and available treatments. , ensuring that all families, regardless of background or location, receive consistent and accurate guidance.
Statewide public health efforts will raise awareness of SMA, potentially leading to better resource allocation and advocacy for affected families. , and could encourage earlier research participation or access to new therapies.
Albany, before your first meeting.
Every bill that moved yesterday, summarized in a sentence and ranked by impact. The Albany Scorecard follows on Sundays.
Free. Unsubscribe in one click. Want alerts on specific bills? Create an account.
Who cares
Headline styles
Test Newborns for SMA
Plain English, a few words. Used as the page title.
Sponsors
No co-sponsors yet.
History
- Referred to health
- Referred to health
Full text
2 pagesUnderlined is new[Struck] is removedOfficial text on nysenate.gov ↗
STATE OF NEW YORK
3355
2019-2020 Regular Sessions
IN SENATE
February 6, 2019
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. Paragraph 1 of subdivision (a) of section 2500-a of the public health law, as amended by chapter 307 of the laws of 2018, is amended to read as follows:
1. 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:
i. phenylketonuria[,];
ii. homozygous sickle cell disease[,];
iii. hypothyroidism[,];
iv. branched-chain ketonuria[,];
v. galactosemia[,];
vi. homocystinuria[,];
vii. critical congenital heart defects through pulse oximetry screening[,];
viii. with regard to any newborn infant who is identified as, or suspected of, having a hearing impairment as a result of a screening conducted pursuant to section twenty-five hundred-g of this title, cause to be administered to such infant a urine polymerase chain reaction (PCR) test for cytomegalovirus, unless the parent of the infant objects thereto; provided that if the commissioner determines that another test for cytomegalovirus is diagnostically equivalent to or better than the urine polymerase chain reaction test, the commissioner may, by regu-
EXPLANATION--Matter in italics (underscored) is new; matter in brackets
[ ] is old law to be omitted.
LBD09416-01-9
S. 3355 2
lation under this section, allow or require the use of that other test[, and];
ix. spinal muscular atrophy; and
x. 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.
§ 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;
(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. 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. Importantly, 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
2017-2018: S7048 committed to Finance
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.