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Bill places focus on rare diseases

 Sen. Julie Raque Adams, R-Louisville.
Sen. Julie Raque Adams, R-Louisville.

FRANKFORT, Ky. (Jan. 10, 2018) – A bill that would promote research, treatment and education on rare diseases advanced out of the state Senate Committee on Health & Welfare this morning.

Known as Senate Bill 7, the legislation would establish the Kentucky Rare Disease Advisory Council and Trust Fund, said Committee Chair and sponsor Sen. Julie Raque Adams, R-Louisville.

In response to a question by Sen. David P. Givens, R-Greensburg, Adams said the council would not receive state tax dollars. Adams said the council would seek out federal grants, donations and money from private foundations to pay for outreach and research.

Pat Dunegan, whose wife has an unusual gastrointestinal disease, testified that people with rare diseases struggle to obtain correct diagnoses, find medical specialists and get access to new and experimental therapies and medications. He said he hoped SB 7 would give a voice to those who battle these diseases.

Pat, and his wife, Jennifer, were later honored on the Senate floor.

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. SB 7 states 80 percent of rare diseases are genetic in origin and can be linked to mutations in a single gene or in multiple genes which can be passed down from generation to generation.

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.

Givens said he liked a committee substitute that amended SB 7 to eliminate some old commissions that no longer meet or have outlived their stated purposes. The substitute also corrected some language in existing statutes such as updating the name of some departments or agencies.

Givens also praised the bill for including a sunset clause. If it becomes law, the council and trust fund would be dissolved on Dec. 1, 2028, unless otherwise reestablished by the General Assembly.