SB 689

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.