Bill places focus on rare diseases

FRANKFORT – A bill that would promote research, treatment and education on rare diseases passed the state Senate today by a 32-0 vote.

Known as Senate Bill 7, the legislation would establish the Kentucky Rare Disease Advisory Council & Trust Fund, said Sen. Julie Raque Adams, R-Louisville, who sponsored the bill. She said the council would seek funding from federal grants, private foundations and donations instead of asking for state tax dollars.

A rare disease, sometimes referred to as an orphan disease, would be defined in the legislation as a disease that affects fewer than 200,000 people. Adams said that there are 7,000 rare diseases affecting about 30 million people across the nation.

The council would consist of at least 14 members appointed by the governor and include doctors, nurses, hospital officials, insurance officials, medical researchers and people diagnosed with rare diseases, as outlined in SB 7. The
members would meet at least three times a year, be unpaid for their work on the council and serve four-year terms.

SB 7 now goes to the state House for consideration.

If it becomes law, the council and trust fund would be dissolved on Dec. 1, 2028, unless otherwise reestablished by the General Assembly.