SB689: Bill Text

SB689,4,15 b. Provides an update on the status of funding of the council, including a list of grants that were sought, accepted, used, and a description of remaining grant balances.

SB689,4,17 c. Provides recommendations to the governor and the legislature on ways to address the needs of people living with rare diseases in the state.

SB689,4,25 2. Annually, the council shall, under s. 13.172 (3), submit a report to the chief clerk of each house of the legislature, for distribution to the appropriate standing committees that address issues of health and mental health. The report shall provide in-depth information regarding the issues described under subd. 1.a. to c., and shall include specific recommendations regarding legislation to address the needs of the rare disease community. Upon request by any of these standing committees, the council shall present information regarding the report at a public hearing.

SB689,5,4 (f) Terms. 1. a. The initial chairperson elected under par. (c) shall serve an initial term that runs through June 30, 2025. At the end of his or her initial term, and every 2 years thereafter, members of the council shall, by a majority vote, elect a new chairperson.

SB689,5,8 b. The initial vice chairperson elected under par. (d) shall serve an initial term that runs through June 30, 2025. At the end of his or her initial term, and every 2 years thereafter, members of the council shall, by a majority vote, elect a new vice chairperson.

SB689,5,10 2. Except as provided under subd. 1., council members under par. (b) 1., 2., and 7. to 11. shall serve 3-year terms.

SB689,5,12 3. Except as provided under subd. 1., council members under par. (b) 3. to 6. shall serve 2-year terms corresponding with the legislative biennium.

SB689,5,15 (g) Vacancies. If a vacancy occurs for any member position under par. (b) 12., the members under par. (b) 1., 3., and 5. shall elect a person to fill the vacancy in a timely manner.

SB689,5,17 (h) Meetings. 1. The initial meeting of the council shall occur within 90 days after the effective date of this subsection .... [LRB inserts date].

SB689,5,21 2. For an initial period determined by the chairperson, the council shall meet at least monthly in person or through use of an online platform. After that initial period, the council will meet on a quarterly basis in person or through use of an online platform on a schedule determined by the chairperson and vice chairperson.

SB689,2 Section 2 . 255.075 of the statutes is created to read:

SB689,5,24 255.075 Rare disease advisory council. (1) In this section, “council” means the rare disease advisory council under s. 15.197 (23).

SB689,6,3 (2) The council shall advise the department regarding issues relating to rare diseases and shall conduct any combination of 4 to 6 of the following activities to benefit the rare disease community in this state:

SB689,6,6 (a) Convene public hearings, make inquiries, and solicit comments from the general public throughout the state to assist the council with an ongoing survey of the needs of rare disease patients, caregivers, and health care providers in the state.

SB689,6,10 (b) Consult, as needed, with experts on rare diseases both on the council and outside the council to develop policy recommendations to improve patient access to and the quality of rare disease specialists, affordable and comprehensive health care coverage, relevant diagnostics, timely treatment, and other needed services.

SB689,6,14 (c) Research and make recommendations to state agencies and insurers that provide services to persons with a rare disease on the impact of coverage, cost-sharing, tiering, or other utilization management procedures on the provision of treatment and care services.

SB689,6,18 (d) Research and identify priorities related to treatments and services provided to persons with rare diseases in the state, and develop policy recommendations that include safeguards against discrimination for these populations on such issues, including in disaster and public health emergency related planning.

SB689,6,20 (e) Evaluate and make recommendations to improve the Wisconsin newborn screening program.

SB689,6,22 (f) Evaluate and make recommendations to improve coverage of treatment and medications for rare disease patients under the Medical Assistance program.

SB689,6,25 (g) Publish a list of existing, publicly accessible resources on research, diagnosis, treatment, and education relating to rare diseases in Wisconsin on the council's Internet site.

SB689,7,2 (h) Identify areas of unmet need for research that can inform future studies and reports by the council.

SB689,7,5 (i) Establish resources for academic institutions, state agencies, health care professionals, and other entities to provide training to employees in this state on rare diseases.

SB689,7,7 (j) Identify and distribute educational resources for health care providers to foster recognition and optimize treatment of rare diseases in this state.

SB689,7,9 (k) Research and identify best practices in the research, diagnosis, and treatment of rare disease in this state.

SB689,7,11 (L) Establish best practices and protocols to use during a state of emergency to aid rare disease patients.

SB689,7,13 (3) (a) The council shall include in its reports required under s. 15.197 (23) (e) a list of all funding sources.

SB689,7,15 (b) The council has no limit on the amount of money they may accept on behalf of the council.

SB689,7,17 (c) The council may use any funding it receives to carry out its duties under sub. (2).

SB689,7,20 (d) No member of the council may solicit or receive funding on behalf of the council from a lobbyist, as defined under s. 13.62 (11), or from a principal, as defined under s. 13.62 (12).

SB689,7,24 (4) The council shall provide opportunities for the public to obtain updates and provide input into the council's work, and shall create and maintain a public Internet site that allows for meeting minutes and notices of upcoming meetings to be posted and public feedback to be submitted.

SB689,7,25 (End)