No Help from Schwarzenegger in California

RSD Education Bill Vetoed by the Governor

Public Awareness Campaign Denied Signature for Little Understood Disease that Affects Up to 6 Million Americans

Sacramento, CA, October 7, 2005 – Today, Governor Arnold Schwarzenegger vetoed AB 1648, the Reflex Sympathetic Dystrophy Education and Research Program Act, introduced by Assemblywoman Fran Pavley (D-Agoura Hills). The bill would have authorized the State Department of Health Services to establish and implement a Reflex Sympathetic Dystrophy public awareness campaign using non-public funding. “It is unfortunate that the Governor vetoed AB 1648 since RSD affects more Americans than victims of breast cancer and HIV / AIDS combined.

The RSD and pain community is to be commended for its efforts to raise public awareness since there is no way to detect or cure this painful disease,” said Assemblywoman Pavley. RSD, which is estimated to affect between 1.5 and six million Americans, is a little understood chronic neurological pain condition of the central nervous system characterized by severe, burning pain (often described as being doused with gasoline and lit on fire). Many patients suffer alone in pain because of the stigma and misunderstanding associated with the disease. RSD is typically triggered by a minor injury or trauma.

Cynthia Toussaint, the bill's sponsor and founder of For Grace, a nonprofit dedicated to achieving the ethical and equal treatment of all women in pain, said, "RSD is a devastating illness if not caught and treated early. In signing AB1648, the Governor would have recognized the importance of educating allCalifornians about the consequences of delayed diagnosis and treatment for RSD.

"Toussaint, who suffers from RSD herself, knows all too well the consequences of delayed treatment and misdiagnosis. For 13 years, doctors told her that the chronic pain she felt was "all in my head. "Toussaint testified before the California Assembly and Senate Health committees this year in support of AB 1648, known as "Cynthia's Bill" in Sacramento. “The demise of 1648 is an unfortunate example of the short-sighted politics and economics that rule Sacramento today.

Make no mistake—hundreds of thousands will continue to suffer needlessly due to the ravages of RSD—and that's a terrible shame as the opportunity for change was just a signature away”, concluded Toussaint.