SB689: Bill Text

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.

For further information see the state fiscal estimate, which will be printed as an appendix to this bill.

The people of the state of Wisconsin, represented in senate and assembly, do enact as follows:

SB689,1 Section 1 . 15.197 (23) of the statutes is created to read:

SB689,2,3 15.197 (23) Rare disease advisory council. (a) Creation. There is created in the department of health services a rare disease advisory council.

SB689,2,5 (b) Membership. The council created under this subsection shall consist of all of the following members:

SB689,2,7 1. The chairperson of the senate committee that addresses health issues or another member of that committee designated by the chairperson.

SB689,2,10 2. The ranking minority member of the senate committee that addresses health issues or another member of that committee designated by that ranking minority member.

SB689,2,12 3. The chairperson of the assembly committee that addresses health issues or another member of that committee designated by the chairperson.

SB689,2,15 4. The ranking minority member of the assembly committee that addresses health issues or another member of that committee designated by that ranking minority member.

SB689,2,17 5. The chairperson of the assembly committee that addresses mental health issues or another member of that committee designated by the chairperson.

SB689,2,20 6. The ranking minority member of the assembly committee that addresses mental health issues or another member of that committee designated by that ranking minority member.

SB689,3,2 7. One representative from the University of Wisconsin Hospitals and Clinics Authority.

SB689,3,3 8. One representative from the Medical College of Wisconsin.

SB689,3,6 9. The program director of the minority health program in the department of health services, or the equivalent position in state government, or his or her designee.

SB689,3,7 10. The state Medicaid director or his or her designee.

SB689,3,8 11. The commissioner of insurance or his or her designee.

SB689,3,10 12. The following members appointed by a majority vote of the members under subds. 1., 3., and 5.:

SB689,3,11 a. One geneticist licensed and practicing in Wisconsin.

SB689,3,14 b. One registered nurse or advanced practice registered nurse with experience treating rare diseases who is licensed or certified under ch. 441 and practices in this state.

SB689,3,16 c. One physician with experience treating rare diseases who is licensed under ch. 448 and practices in this state.

SB689,3,18 d. One hospital administrator from a hospital in this state that provides care to persons diagnosed with a rare disease or his or her designee.

SB689,3,20 e. Two patients who have a rare disease, including one who is at least 18 years of age, but under 30 years of age, and one who is 30 years of age or older.

SB689,3,22 f. Two caregivers of persons with a rare disease, including one who is providing care to a child and one who is providing care to a spouse or parent.

SB689,3,24 g. One representative of a rare disease patient organization that operates in this state.

SB689,4,2 h. One pharmacist with experience dispensing drugs used to treat rare diseases or a representative of the biopharmaceutical industry.

SB689,4,4 (c) Election of the initial chairperson. The initial chairperson shall be elected by majority vote of the members under par. (b) 1., 3., 5., and 7. to 11.

SB689,4,7 (d) Election of the initial vice-chairperson. The vice-chairperson shall be elected by a majority vote of the members appointed under par. (b) 2., 4., 6., and 7. to 11.

SB689,4,11 (e) Reports. 1. No later than one year after the effective date of this act .... [LRB inserts date], and biennially thereafter, the council shall submit a report to the governor, the secretary of health services, and the commissioner of insurance that does all of the following:

SB689,4,12 a. Describes the activities and progress of the council.

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)