HOUSE BILL NO. 5465

A bill to establish a rare disease review committee within the department of health and human services and to prescribe its powers and duties; and to prescribe the powers and duties of certain state officers and entities.

the people of the state of michigan enact:

Sec. 1. As used in this act:

(a) "Committee" means the rare disease review committee created in section 3.

(b) "Department" means the department of health and human services.

(c) "Director" means the director of the department.

(d) "Rare disease" means a disease or condition that affects less than 200,000 individuals in the United States at any 1 time.

Sec. 3. (1) The rare disease review committee is created within the department.

(2) The committee consists of the following 9 members, appointed by the governor as follows:

(a) Two members representing the department.

(b) One physician who is licensed under part 170 or 175 of the public health code, 1978 PA 368, MCL 333.17001 to 333.17097 and 333.17501 to 333.17556.

(c) One individual who is selected from a list of nominees submitted by the senate majority leader.

(d) One individual who is selected from a list of nominees submitted by the speaker of the house of representatives.

(e) One registered professional nurse who is licensed under part 172 of the public health code, 1978 PA 368, MCL 333.17201 to 333.17242.

(f) One licensed bachelor's social worker or licensed master's social worker who is licensed under part 185 of the public health code, 1978 PA 368, MCL 333.18501 to 333.18518.

(g) Two members of the public.

(3) The governor shall appoint the first members to the committee by January 1, 2021.

(4) Members of the committee serve for terms of 2 years or until a successor is appointed, whichever is later, except that of the members first appointed 4 must serve for 1 year.

(5) If a vacancy occurs on the committee, the governor shall make an appointment for the unexpired term in the same manner as the original appointment.

(6) The governor may remove a member of the committee for incompetence, dereliction of duty, malfeasance, misfeasance, or nonfeasance in office, or any other good cause.

(7) The governor shall call the first meeting of the committee. At the first meeting, the committee shall elect a chairperson from among the members appointed under subsection (2)(a) and shall elect other officers as it considers necessary or appropriate. After the first meeting, the committee shall meet at least quarterly, or more frequently at the call of the chairperson or if requested by a majority of the members of the committee.

(8) A majority of the members of the committee constitute a quorum for the transaction of business at a meeting of the committee. A majority of the members present and serving are required for official action of the committee.

(9) The business that the committee performs must be conducted at a public meeting of the committee held in compliance with the open meetings act, 1976 PA 267, MCL 15.261 to 15.275.

(10) A writing prepared, owned, used, in the possession of, or retained by the committee in the performance of an official function is subject to the freedom of information act, 1976 PA 442, MCL 15.231 to 15.246.

(11) Members of the committee serve without compensation. However, members of the committee may be reimbursed for their actual and necessary expenses incurred in the performance of their official duties as members of the committee.

Sec. 5. (1) The committee shall develop a list of rare diseases for purposes of this act and make the list available to the public by posting the list on the department's website. The committee shall biennially review the list and make any updates to the list that the committee determines necessary or appropriate.

(2) Subject to subsections (3) and (4), the committee shall annually select at least 1 rare disease from the list described in subsection (1) and do all of the following:

(a) Make findings on the prevalence of the rare disease in this state.

(b) Make findings on the estimated overall cost of the rare disease over the course of 1 year.

(c) Make any other finding on the rare disease that the committee considers relevant.

(d) Develop recommendations on legislation to address the findings described in subdivisions (a), (b), and (c).

(3) When selecting a rare disease under subsection (2), the committee shall consider each of the following rare diseases and determine whether any of the following rare diseases should be prioritized over another rare disease occurring in the United States that is on the list described in subsection (1):

(a) Spina bifida.

(b) Krabbe disease.

(c) Cystic fibrosis.

(d) A pediatric autoimmune neuropsychiatric disorder if the disorder is considered a rare disease.

(e) Long QT syndrome.

(f) Cytomegalovirus.

(4) In making findings and developing recommendations under subsection (2), the committee shall consult with persons that specialize in the rare disease.

(5) By September 30, 2021 and annually thereafter, the committee shall prepare a report of the findings and recommendations described in subsection (2) and shall submit the report to the standing committees of the house of representatives and senate on health policy.

(6) The director shall ensure that each report prepared by the committee is made available to the public on the department's website for at least 4 years.