1.1 A bill for an act
1.2 relating to health;
establishing the Minnesota Parkinson's Research Trust Fund;
1.3 requiring a report;
appropriating money;proposing coding for new law in Minnesota
1.4 Statutes, chapter 144.
1.5 BE IT ENACTED BY THE LEGISLATURE
OF THE STATE OF MINNESOTA:
1.6 Section 1. [144.0531]
MINNESOTA PARKINSON'S RESEARCH TRUST FUND.
1.7 Subdivision
1.Short title. This section may be cited as the "Minnesota
Parkinson's
1.8 Research Trust Fund
Act."
1.9 Subd.
2.Purpose and findings. The
legislature finds:
1.10 (1) Parkinson's disease
is a progressive neurological disorder affecting approximately
1.11 one million Americans,
with an estimated 90,000 new diagnoses each year;
1.12 (2) the financial burden
of Parkinson's disease on individuals, families, and the health
1.13 care system is immense,
with annual costs in the United States exceeding $52,000,000,000,
1.14 including medical
expenses and lost income;
1.15 (3) there is currently
no cure for Parkinson's disease, and innovative research is essential
1.16 to advance therapies,
improve patient outcomes, and alleviate the burden of Parkinson's
1.17 disease; and
1.18 (4) caregivers of
individuals with Parkinson's disease provide critical support, often at
1.19 significant personal and
financial sacrifice.
1.20 Subd. 3.Establishment
of the fund. The Minnesota Parkinson's Research Trust Fund
1.21 is established in the
state treasury. The trust fund is a
special revenue fund and is not part
1.22 of the general fund.
Money in the trust fund is held in trust and may be expended only as
2.1 provided in this
section. The trust fund shall be used to support innovative research on
2.2 Parkinson's disease
and provide caregiver assistance as provided in this section.
2.3 Subd.
4.Purposes. The Minnesota Parkinson's Research Trust Fund is
established to:
2.4 (1) create and
expedite innovation in research on Parkinson's disease and related disorders
2.5 to: (i) improve the
health of residents of Minnesota; (ii) enhance the potential for a medical
2.6 or scientific
breakthrough in research on Parkinson's disease and related disorders; and
(iii)
2.7 enhance the research
superiority of Minnesota regarding Parkinson's disease and related
2.8 disorders;
2.9 (2) attract scientific
researchers and create exceptional jobs in Minnesota; and
2.10 (3) develop and
implement a research plan to foster synergistic collaboration between
2.11 eligible institutions of
higher education, institutional partners, and other grant recipients for
2.12 research on Parkinson's
disease and related disorders.
2.13 Subd. 5.Powers
and duties. (a) The commissioner:
2.14 (1) may award grants to
institutions of learning, advanced medical research facilities,
2.15 public or private
persons, and collaboratives in Minnesota that are involved in Parkinson's
2.16 research that furthers
the purposes of this section, including:
2.17 (i) implementation of a
research plan;
2.18 (ii) research, including
translational and clinical research, into the causes of, means of
2.19 prevention of, and
treatment and rehabilitation for Parkinson's disease and related disorders;
2.20 (iii) research,
including translational research, to develop therapies, protocols, medical
2.21 pharmaceuticals, or
procedures for the substantial mitigation of the symptoms of Parkinson's
2.22 disease and related
disorders;
2.23 (iv) facilities, equipment,
supplies, salaries, benefits, and other costs related to the
2.24 research of Parkinson's
disease and related disorders; and
2.25 (v) prevention programs
and strategies to mitigate the detrimental health impacts of
2.26 Parkinson's disease and related
disorders;
2.27 (2) shall collaborate
with relevant state agencies, coordinating councils, and consortiums
2.28 to enhance health care
and research for Parkinson's disease and related disorders;
2.29 (3) shall establish the
appropriate standards and oversight bodies to ensure grant money
2.30 is used for the purposes
of this section;
2.31 (4) shall employ
necessary staff to administer the trust fund;
3.1 (5) shall manage grant
accounting, grant monitoring, technical and document management
3.2 of the grant
application review process, legal services, and compliance services;
3.3 (6) shall monitor
grant contracts authorized by this section and ensure each grant recipient
3.4 complies with the
terms and conditions of the contract;
3.5 (7) shall ensure all
grant proposals comply with this section and rules adopted under
3.6 this chapter before
the proposals are submitted to the oversight committee for approval;
3.7 (8) shall monitor
grant proposals for conflicts of interest; and
3.8 (9) shall collaborate
with the statewide research and clinical data registry for research
3.9 related to Parkinson's
disease and related disorders.
3.10 (b) The commissioner
shall implement, monitor, and, as necessary, revise the research
3.11 plan.
3.12 Subd. 6.Administration
and oversight. (a) The commissioner of health shall establish
3.13 a Neurodegenerative
Disease Advisory Council to oversee the administration of the trust
3.14 fund. The advisory
council shall consist of representatives from:
3.15 (1) leading research
institutions in Minnesota;
3.16 (2) Parkinson's advocacy
organizations;
3.17 (3) caregiver support
groups; and
3.18 (4) the medical
community specializing in neurological diseases.
3.19 (b) The advisory council
shall establish guidelines for grant applications, selection
3.20 criteria, and reporting
requirements to ensure transparency and accountability.
3.21 Subd. 7.Reporting
requirements. Recipients of grant funds shall submit an annual
3.22 report to the
commissioner detailing:
3.23 (1) the progress of
funded research;
3.24 (2) outcomes and
measurable impacts of caregiver support programs; and
3.25 (3) any additional
recommendations for improving the program's effectiveness.
3.26 Subd. 8.Annual
report. (a) No later than January 31 of each year, the commissioner
3.27 shall prepare and submit
to the chairs and ranking minority members of the legislative
3.28 committees with primary
jurisdiction over health finance a report on:
3.29 (1) the trust fund's
grants under this section;
4.1 (2) a list of
recipients of grants awarded during the preceding state fiscal year and the
4.2 grant amount awarded
to each recipient;
4.3 (3) any research
accomplishments a grant recipient or the recipient's partners achieved
4.4 during the preceding
state fiscal year;
4.5 (4) an assessment of
the progress of grant recipients;
4.6 (5) a statement of
strategic research plans;
4.7 (6) an estimate of the
financial cost to Minnesota of Parkinson's disease and related
4.8 disorders during the
most recent state fiscal year for which data is available, including the
4.9 amounts Minnesota
spent related to Parkinson's disease and related disorders under Medicaid,
4.10 the Teacher Retirement
System of Minnesota, and the Employees Retirement System of
4.11 Minnesota; and
4.12 (7) a statement of
grant's compliance program activities, including any recommendations
4.13 identified through the
activities.
4.14 (b) The commissioner
must publish the report on the department's website.
4.15 Subd. 9.State
plan to address neurodegenerative diseases. (a) Within 12 months of
4.16 the effective date of
this act, the commissioner, with input from the council and stakeholders,
4.17 shall develop and
publish a state plan to address neurodegenerative diseases.
4.18 (b) At a minimum, the
plan shall include:
4.19 (1) current estimates of
prevalence, incidence, and demographic distribution for each
4.20 condition and
identification of data gaps;
4.21 (2) a determination of
objectives that include prevention, diagnosis, care, research,
4.22 surveillance, workforce,
and support services;
4.23 (3) strategies for
improving early diagnosis and timely access to specialists;
4.24 (4) care coordination
and caregiver support strategies;
4.25 (5) a workforce
development plan, including training for neurologists, primary care
4.26 clinicians, allied
health professionals, and long-term care staff;
4.27 (6) a public awareness
and education plan emphasizing equity and culturally competent
4.28 outreach;
4.29 (7) a data and registry
integration strategy, including mechanisms for secure data sharing
4.30 and research access;
5.1 (8) a research and
innovation agenda with prioritized areas for translational and clinical
5.2 research;
5.3 (9) recommendations
for sustainable financing, including public and private funding
5.4 streams and potential
creation of a dedicated research or program fund; and
5.5 (10) evaluation
metrics and a schedule for monitoring, reporting, and planning updates
5.6 at least every five
years.
5.7 (c) The draft plan
shall be made available for public comment for at least 30 days before
5.8 finalization.
5.9 Subd.
10.Coordination of activities. (a) The commissioner shall
coordinate activities
5.10 under this section with
relevant federal agencies, federally supported research centers,
5.11 academic medical
centers, and private sector partners to leverage resources and avoid
5.12 duplication.
5.13 (b) To the extent
permitted by law, the commissioner may enter into memoranda of
5.14 understanding to
facilitate data sharing and collaborative research.
5.15 Subd.
11.Protections and limitations. (a) Nothing in this section shall
be construed to
5.16 require insurance
coverage beyond what is otherwise required by state or federal law.
5.17 (b) Participation in the
registry is voluntary, and no person shall be denied services or
5.18 benefits for refusing to
enroll.
5.19 (c) Data collected under
this section shall not be used for nonresearch law enforcement
5.20 or discriminatory
purposes.
5.21 Subd.
12.Rulemaking authority. The commissioner may adopt rules or
regulations
5.22 necessary to implement
this section.
5.23 Subd.
13.Severability. If any provision or application of this section
is held invalid,
5.24 the remainder shall
continue in effect.
5.25 EFFECTIVE DATE. This
section is effective October 1, 2026.
5.26 Sec. 2. APPROPRIATION AND
ALLOCATION OF FUNDS.
5.27 (a) $25,000,000 in fiscal year 2027 is appropriated from the
general fund to the
5.28 commissioner of health
to implement Minnesota Statutes, section 144.0531.
5.29 (b) Of the amount in
paragraph (a):
6.1 (1) $20,000,000 shall
be awarded through competitive grants to state universities, research
6.2 institutions, and
medical centers actively engaged in Parkinson's research with priority given
6.3 to innovative
therapies and projects aimed at finding a cure;
6.4 (2) $3,000,000 shall
be used to establish and expand programs that support caregivers
6.5 of individuals living
with Parkinson's disease, including respite care, training, and mental
6.6 health resources; and
6.7 (3) $2,000,000 shall
be used to establish a Neurodegenerative Disease Advisory Council
6.8 that shall develop and
publish a state plan to address neurodegenerative diseases.
6.9 EFFECTIVE DATE.
This section is effective July 1, 2026.
