New York Governor Paterson Vetoes Vital FD
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,
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
and scientific research for the benefit of people
afflicted with FD. The Foundation also conducts social service
public awareness programs for the benefit of the FD community and
for those in the general population
who may be at risk for FD.