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New York Governor Paterson Vetoes Vital FD Legislation
Bill would have established program for screening, education and counseling
for Familial Dysautonomia (FD)


An important piece of legislation was recently passed by the New York State legislature. It provided for a state-funded FD disease screening and counseling program, and the development and dissemination of educational materials. It would have also permitted the commissioner of health to make grants and enter into contracts with public and private nonprofit entities for the establishment and operation of the program. The program included FD, Canavan's, and Tay-Sachs disease.

In order for the bill to become law, Governor Paterson would have had to approve it. The Dysautonomia Foundation wrote to the Governor, urging him to approve the bill, thereby helping families avoid the tragedy of a devastating genetic disease and ultimately saving taxpayers considerable expense, since a genetic screening and education program could be far less costly than the expense of Medicaid-provided healthcare for people afflicted with serious medical problems. The Foundation also contacted FD families throughout the state and urged them to send letters to the governor.

Unfortunately, the governor chose to veto the bill. "While I have signed hundreds of bills into law that will help improve the lives of all New Yorkers," the governor wrote, "I have an obligation and responsibility to reduce taxpayer costs beyond what our State can afford. Many of the bills I have vetoed are worthy projects with laudable goals, but in the face of this current fiscal crisis, we must adjust our budget priorities to reflect our economic reality."  (See the governor's press release, here.)

We believe the governor made a strategic error, overlooking the long-term health and fiscal benefits of this legislation to New Yorkers.

In a separate release, the governor wrote, "Informing prospective parents who may be at risk of being carriers of the importance of genetic testing is a worthy goal, and there are a number of existing programs that offer such screening along with genetic counseling. But this bill would require the establishment of a new program mandating that certain activities be carried out, whether by the Department of Health or by the recipients of grants, and this cannot be accomplished without funding."

We appreciate the governor's sensitivity to the problem of genetic disease and New York's budget problems, but we can't agree with the governor's apparent refusal to consider both the future expense of genetic disease-related healthcare costs as well as the inadequacy of current screening and education programs in his explanation for his veto.

We are hopeful that this legislation will pass again next year, after the gubernatorial election, and will then be approved and become New York State law.

The Dysautonomia Foundation

The Dysautonomia Foundation is a nonprofit organization supporting the best possible medical care
and scientific research for the benefit of people afflicted with FD. The Foundation also conducts social service
and public awareness programs for the benefit of the FD community and for those in the general population
who may be at risk for FD.

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