Millman’s Rare Diseases Bill Passes Assembly

Legislation seeks to require coverage for treatment of rare diseases
February 27, 2009
Albany, NY — Yesterday, the Assembly voted unanimously to pass legislation introduced by Assemblywoman Joan Millman (A.301) to extend health insurance coverage for federally-approved medication that was not the subject of a clinical trial for that particular rare disease. Millman’s legislation will benefit patients suffering from life-threatening and disabling rare diseases that often are not the subjects of clinical trials because so few people suffer from these diseases. Following passage of her bill, Assemblywoman Millman shared a special moment on the Assembly floor with a young girl who is battling Giant Axonal Neuropathy, a rare disease. A.301 has been referred to the Senate Committee on Health, where it will be considered before it can be brought before the full Senate for a vote.

“I urge the Senate to act on this legislation,” Millman said. “Current law does not provide access to clinical trials and other life-saving treatment for those suffering from rare diseases. Many patients cannot afford to pay out of pocket for potentially life-saving treatments. 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.