HOUSE BILL NO. 4654

A bill to amend 1978 PA 368, entitled

"Public health code,"

(MCL 333.1101 to 333.25211) by adding sections 5135 and 5135a.

the people of the state of michigan enact:

Sec. 5135. (1) The rare disease advisory council is created within the department.

(2) The council shall consist of the director, or his or her designee, and the following members, appointed by the governor:

(a) One researcher who specializes in rare diseases.

(b) Two individuals with a rare disease or who are parents or caregivers of an individual with a rare disease.

(c) One representative of health care industries operating in this state that support the care and treatment of individuals with rare diseases.

(d) Two representatives from rare disease patient organizations in this state.

(e) One health care professional who has expertise in treating patients with rare diseases.

(3) Subject to subsection (13), the governor may appoint additional members to the council that the governor considers necessary or appropriate.

(4) The members first appointed to the council must be appointed within 90 days after the effective date of this section.

(5) Members of the council shall serve for terms of 4 years or until a successor is appointed, whichever is later, except that of the members first appointed 3 shall serve for 1 year, 3 shall serve for 2 years, and 1 shall serve for 3 years.

(6) A vacancy on the council must be filled in the same manner as the original appointment. An individual appointed to fill a vacancy created other than by expiration of a term must be appointed for the unexpired term of the member whom he or she is to succeed in the same manner as the original appointment.

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

(8) The director shall call the first meeting of the council. At the first meeting, the council shall elect from among its members a chairperson and other officers as it considers necessary or appropriate. After the first meeting, the council shall meet at least quarterly, or more frequently at the call of the chairperson or if requested by 4 or more members.

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

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

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

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

(13) At or after the first meeting of the council, the council may make recommendations to the governor on the appointment of additional members to the council that the council considers necessary or appropriate to carry out its duties.

(14) As used in this section and section 5135a:

(a) "Council" means the rare disease advisory council created in subsection (1).

(b) "Rare disease" means a disease that affects fewer than 200,000 individuals in the United States.

Sec. 5135a. (1) The council may do 1 or more of the following:

(a) Apply for and accept grants and gifts from government and private sources. The department shall provide clerical and administrative assistance to the council in applying for grants under this subdivision, as the director considers necessary or appropriate.

(b) Hold public hearings and make inquiries and receive comments from the general public to assist the council in developing recommendations under this section.

(c) Consult with experts on rare diseases to assist the council in developing recommendations under this section, including, but not limited to, experts from the private sector, organized labor groups, government agencies, and institutions of higher education.

(2) The council shall do all of the following:

(a) Research and identify priorities relating to the cost-effectiveness of and access to treatments and services provided to individuals with rare diseases in this state, and develop policy recommendations aimed at preventing discrimination against individuals with rare diseases with respect to the cost-effectiveness of and access to treatments and services and other related issues.

(b) Identify best practices for rare diseases from other states and at the national level that could improve the education, care, and treatment of adults and minors with rare diseases in this state.

(c) Coordinate with other rare disease advisory bodies, community-based organizations, and other public and private organizations in performing its duties under this section to ensure greater cooperation between this state, other states, and the federal government regarding the research, diagnosis, and treatment of rare diseases, by disseminating the council's research, findings, and recommendations when appropriate.

(d) Serve as an advisory body on rare diseases to the legislature, the department, and the governor.

(e) Research and make recommendations to the legislature on the most appropriate method to collect data on rare diseases.

(f) Provide information or advice on rare diseases to the department or governor, as the director or governor considers necessary or appropriate.

(g) Beginning December 31, 2021, and by December 31 of every other year beginning after the first report is submitted to the legislature under this subdivision, submit a written report to the legislature on the activities, findings, and recommendations of the council.

Enacting section 1. This amendatory act takes effect 90 days after the date it is enacted into law.