Committee approves motion to move rare disease council bill to appropriations

The Health, Welfare and Institutions committee voted Tuesday to report and refer to appropriations a bill that will create a rare disease advisory council. Delegate Kathleen Murphy sponsored HB 1995, sharing that her daughter has cystic fibrosis and the costs associated with rare diseases can be financially challenging.


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“I think it’s time to establish an institution in Virginia that will advocate for those who have rare diseases,” she said in the meeting. “There are special needs for those who have rare diseases. There are financial challenges and the challenge of getting the needed medications.”

Murphy said she was told it would cost $42,716 the establish the council, but she expects on-going expenses can be addressed by fundraising.

“This merits our attention,” she said. “If people aren’t diagnosed early they can have horrible consequences.”

Another bill, HB 1963 — designed to fund local health departments with state funds and local matching funds — was also voted to report and refer to appropriations.

The committee also voted to report and refer to appropriations HB 2098 , which authorizes the governor to lease a portion of property, which was previously used by the Department of Behavioral Health and Development, as the Southwestern Virginia Mental Health Institute to Smyth County for a term of three years. The bill is sponsored by Israel O’Quinn.