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Sponsors
1 Co-sponsor
History
- Referred to health
- Referred to health
Companion bill
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Establishes program for familial dysautonomia and Tay-Sachs disease screening; authorizes department of health to provide grants
In Assembly Committee · Ways And Means · Sponsor Jeffrey Dinowitz
Full text
The text isn't available here yet. Check nysenate.gov.
Sponsor's memo
BILL NUMBER:S738
Title of bill
An act to amend the public health law, in relation to the establishment of a program for familial dysautonomia, Canavan's disease and Tay-Sachs disease screening and counseling
Purpose or general idea of the bill
To provide for the establishment and operation of a state funded voluntary familial dysautonomia, Canavan's disease, and Tay-Sachs disease screening and counseling program, and to develop and disseminate educational materials relating to these diseases. This bill would permit the commissioner of health to make grants and enter into contracts with public and nonprofit, private entities for projects for the establishment and operation of this program. Participation would be wholly voluntary, The program would be established and operated primarily through existing health programs. All tests, medical records and other information regarding screening and counseling would be kept strictly confidential. Within one year of enactment of this legislation, the commissioner will submit a report to the governor and the legislature on the administration of this article and on recommendations for additional legislation.
Summary of specific provisions
Section 1 of the bill adds a new article 27-DDD to the public health law outlining the legislative intent functions and duties of the New York State Commissioner of Health, costs, participation, application, confidentiality information, and reporting.
Section 2 of the bill provides for an effective date.
Justification
Familial dysautonomia, Canavan's disease, and Tay-Sachs disease are fatal, inherited diseases whose victims rarely live past the age of five. At present, there is no cure for the disease. The disease occurs most often in children of Jewish extraction and of Eastern European origin. One in every thirty Ashkenazi Jews (those of Eastern European descent) is a carrier of the Tay-Sachs gene. Couples who are both carriers, have a 25% chance of having a Tay-Sachs child. The estimated cost of caring for a Tay-Sachs child during their short life is estimated to be $50,000 to $150,000. The emotional cost to the family of a Tay-Sachs child, is simply immeasurable. Simple and inexpensive tests have been devised which identify those who are Tay-Sachs carriers. Voluntary, confidential screening and counseling would be available under this program. Clearly, New York State should establish Tay-Sachs disease counseling and screening programs for its citizens as California did in its October 1977 Tay-Sachs disease prevention month.
Prior legislative history
2009-10: S.7976 (Squadron) Passed Senate, A.1135 (Dinowitz), Passed Assembly 2007-08: A.3907 (Dinowitz) - Passed Assembly 2005-06: A.2461-A Passed Assembly/S.5660-A Referred to Health 2003-04: A.9262-A Passed Assembly
Fiscal implications
To be determined.
Effective date
The 180th day after it shall have become a law, with provisions.
Summaries, headlines and scores are AI-generated from the official bill text. How we score bills. Source: NYS Open Legislation.