May 10, 2018, Introduced by Reps. Tedder, Hauck, Graves, Howrylak, Kahle, Sheppard, Calley, Hornberger, Brinks, Hammoud, Camilleri, Garrett, Love, Hertel, Maturen and Crawford and referred to the Committee on Health Policy.
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) Two physicians licensed under article 15, each of whom has
expertise in treating patients with rare diseases and 1 of whom is
a pediatrician who provides care to children with rare diseases.
(b) One registered professional nurse licensed under article
15 who has expertise in providing care to patients with rare
diseases.
(c) A representative of the biopharmaceutical industry.
(d) Two representatives of hospitals licensed under article
17.
(e) A representative of the health insurance industry.
(f) A representative of the scientific community who is
engaged in research on rare diseases.
(g) Two parents who have a child with a rare disease.
(h) Two individuals who have a rare disease.
(i) Two representatives from rare disease patient
organizations in this state.
(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 8 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 8 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 make recommendations to the legislature on
the quality, cost-effectiveness, and access to treatment and
services provided to individuals with rare diseases in this state,
including which issues described in this subdivision should be
prioritized in this state.
(b) Identify best practices for rare diseases from other
states and at the national level that could improve the 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, 2019, 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.