Albany – At its first meeting of the new legislative session, the New York State Assembly Committee on Health will consider legislation (A.301) introduced by Assemblywoman Joan Millman to extend health insurance coverage for federally-approved clinical trials likely to benefit patients suffering from life-threatening and disabling rare diseases.
A.301 will be reviewed Thursday, January 22, 2009 by the Health Committee, and pending approval by the committee, the bill will then move to a vote on the Assembly floor. Last session, Millman’s bill was successful in the Health Committee but was never brought to the full Assembly for a vote.
“I am hopeful that this session A-301 finally becomes law,” said Millman. “Current law does not provide access to clinical trials and other life-saving treatment for those suffering from rare diseases. It is a shame that a patient might forego treatment for a rare disease simply because his or her health insurance does not cover it. Through discussions with my colleagues many have recognized the importance of this issue and now the bill has over 30 cosponsors.”
Groups such as the Sarcoma Foundation of America, Creutzfeldt-Jakob Disease Foundation and New Yorkers for Accessible Health Care Coverage have endorsed A-301. A list of rare diseases is maintained by the National Institutes of Health Office of Rare Diseases through the creation of the federal Rare Diseases Act of 2002.