Senate passes Holy bill to create advisory council on rare diseases

A bill passed unanimously by the Senate last night would add Washington to the handful of states with advisory councils on rare diseases.

Senate Bill 5886, a bipartisan proposal introduced by 6th District Sen. Jeff Holy, would establish an advisory council on rare diseases within the state Department of Health to advise on research, diagnosis, treatment and education related to rare diseases. Under the measure, the advisory council must submit annual reports on the council’s work and other findings and recommendations to the governor and Legislature starting Dec. 1, 2024.

“This bill would benefit those in Washington who suffer from a rare disease, as well as those who might be afflicted with a rare disease in the future,” said Holy, R-Cheney. “Rare diseases take a substantial financial and emotional toll on patients and their families. This bill could help this vulnerable population by creating an advisory council to focus on the concerns of rare-disease patients in our state. Hopefully, that work can eventually lead to fewer cases of rare diseases in Washington, as well as fewer deaths, through early diagnosis and intervention.”

A rare disease is defined as any condition that affects fewer than 200,000 people in America. Rare diseases include genetic conditions, infections, cancers and autoimmune diseases. The National Institutes of Health estimates there may be as many as 7,000 rare diseases, and that 25 million to 30 million Americans may be living with a rare disease.

Under SB 5886, the rare diseases advisory council would consist of 12 voting members serving three-year terms, including four clinicians and researchers specializing in rare diseases, four individuals representing patients, the director of the program for children with special health care needs , a representative from the state Health Care Authority, and two representatives from the life-sciences industry focusing on developing therapeutic products for rare-disease patients or related research efforts.

SB 5886 now goes to the House of Representatives for consideration.