Rare disease advisory council. (FE)

What it would have done

Summary by the Legislative Reference Bureau, the Legislature's nonpartisan drafting office. It's their wording, not ours.

This bill establishes a rare disease advisory council in the Department of Health Services to advise DHS and provide recommendations to both the governor and the legislature regarding issues relating to rare diseases. Under the bill, the council is required to conduct activities to benefit the rare disease community in the state, selecting any combination of four to six options from a list of potential activities that includes, among other things: 1) convening public hearings, making inquiries, and soliciting comments from the general public to assist the council with an ongoing survey of the needs of rare disease patients, caregivers, and health care providers in the state; 2) researching and making recommendations to state agencies and insurers; 3) researching and identifying priorities related to treatment and services provided to rare disease patients and developing policy recommendations that include safeguards against discrimination; 4) evaluating and making recommendations to improve coverage under the Medical Assistance program; 5) publishing a list of publicly available resources; 6) establishing resources to assist with training employees on rare diseases; and 7) researching and identifying best practices in the research, diagnosis, and treatment of rare disease in the state.

The bill requires the council 1) to provide opportunities for the public to obtain updates and provide input into the council's work and 2) to create and maintain a public website that allows for meeting minutes and meeting notices to be posted and public feedback to be submitted.

Who's behind it

2 senators are its authors⁠. All 2 are Republicans.

11 more lawmakers signed on in support⁠.

What it would cost

State agencies filed a cost estimate. Each opens as a PDF from the Legislature.

• Fiscal Estimate From DHS