SF 2344 (LSB 5584XS (3) 91)

SENATE FILE 2344

BY  STAED

A BILL FOR

An Act relating to Parkinson’s disease prevention, research, and care, making appropriations, and including effective date provisions.
BE IT ENACTED BY THE GENERAL ASSEMBLY OF THE STATE OF IOWA:

    Section 1.  NEW SECTION.  135.196  Parkinson’s disease prevention, research, and care fund —— state plan.
   1.  Fund —— grants.
   a.  A Parkinson’s disease prevention, research, and care fund is created in the state treasury under the control of the department. The fund shall consist of moneys appropriated to or deposited in the fund. Notwithstanding section 8.33, moneys in the fund that remain unencumbered or unobligated at the close of a fiscal year shall not revert but shall remain available for expenditure for the purposes designated. Notwithstanding section 12C.7, subsection 2, interest or earnings on moneys in the fund shall be credited to the fund.
   b.  Moneys in the fund are appropriated to the department to be used for any of the following purposes:
   (1)  To award grants to public or private entities, including but not limited to institutions of higher education governed by the state board of regents, for any of the following purposes:
   (a)  To create and expedite innovation in research on Parkinson’s disease and related disorders to improve the health of residents of this state, enhance the potential for a medical or scientific breakthrough in research on Parkinson’s disease and related disorders, and enhance the quality and quantity of research in this state regarding Parkinson’s disease and related disorders.
   (b)  To attract, create, or expand research capabilities to promote a substantial increase in research on Parkinson’s disease and related disorders, strategies for prevention of Parkinson’s disease and related disorders, and the creation of associated jobs in this state.
   (c)  To support caregivers of individuals living with Parkinson’s disease, including respite care, training, and mental health resources.
   (2)  To develop, implement, and revise the state plan under subsection 5 to foster synergistic collaboration between institutions of higher education governed by the state board of regents and their partners and other grant recipients in research on Parkinson’s disease and related disorders.
   2.  Advisory council.  The department shall establish a neurodegenerative disease advisory council within the department to advise the department on establishing guidelines for grant applications, grant award selection criteria, and reporting requirements by grant recipients under this section, and to establish and revise the state plan under subsection 5. The council must include members from leading research institutions in this state, members from organizations advocating for individuals with Parkinson’s disease, members from caregiver support groups, and members from the medical community who specialize in the diagnosis and treatment of neurological diseases. Notwithstanding section 4A.5, the council shall not dissolve.
   3.  Reports by recipients.  A recipient of a grant under this section shall annually submit a report to the department in a manner determined by the department. The report must include information detailing, as applicable, the progress of funded research, outcomes and measurable impacts of caregiver support programs, recommendations for improving grants awarded under this section, and any other information required by the department.
   4.  Report by department.  On or before January 31 of each year, the department shall submit a report to the governor and the general assembly. The department shall also publish the report on the department’s internet site. The report must provide, for the previous fiscal year, a list of recipients of grants, the amounts of the grants, the accomplishments and achievements of grant recipients, the fund’s financial statements, an assessment of the effectiveness of the department’s strategies and plans in awarding grants, an estimate of the cost to this state of caring for individuals with Parkinson’s disease and related disorders, a statement of the effectiveness of the department’s recordkeeping standards and oversight methods for the use of grants, and any recommendations for proposed legislation.
   5.  State plan.  The department shall develop and periodically revise a state plan to address neurodegenerative diseases, with Parkinson’s disease as the initial and primary focus. The plan shall address related neurodegenerative diseases only to the extent that a related neurodegenerative disease informs Parkinson’s disease, prevention, diagnosis, care, and research. The department shall publish the plan on the department’s internet site. The plan must include but is not limited to estimates of the prevalence, incidence, and demographic distribution for Parkinson’s disease and related disorders; the identification of data gaps; short-term and long-term goals and measurable objectives for prevention, diagnosis, care, research, surveillance, workforce, and support services; a strategy for improving early diagnosis and timely access to specialists; care coordination and caregiver support strategies; a workforce development plan including training for neurologists, primary care clinicians, allied health professionals, and long-term care staff; a public awareness and education plan emphasizing equity and culturally competent outreach; a data and registry integration strategy, including mechanisms for secure data sharing and research access; a research and innovation agenda with prioritized areas for translational and clinical research; recommendations for sustainable financing, including public and private funding streams and potential creation of dedicated research or program funds; evaluation metrics; and a strategy and schedule for revising the plan at least every five years.
   6.  Cooperation.  For purposes of this section, the department may collaborate and coordinate with private sector entities and with federal, state, and local government entities to enhance the effectiveness of grants awarded under this section, leverage available resources effectively, and avoid duplication. The department may enter into agreements with such entities to facilitate data sharing and collaborative research, provided the data does not contain confidential information. This subsection does not apply to federal, state, and local law enforcement agencies.
   7.  Rules.  The department shall adopt rules pursuant to chapter 17A to implement and administer this section.
    Sec. 2.  APPROPRIATION.  There is appropriated from the general fund of the state to the department of health and human services for the fiscal year beginning July 1, 2026, and ending June 30, 2027, the following amount, or so much thereof as is necessary, to be used for the purposes designated:
   For deposit in the Parkinson’s disease prevention, research, and care fund created in section 135.196, as enacted by this Act:
   ...................................................................... $  3,000,000

   1.  Of the moneys appropriated in this section, $1,000,000 shall be allocated to award grants to institutions of higher education governed by the state board of regents, or public or private research institutions or medical centers actively engaged in Parkinson’s disease research, with priority given to applications aimed at developing a cure for Parkinson’s disease.
   2.  Of the moneys appropriated in this section, $1,000,000 shall be allocated to award grants to support caregivers of individuals living with Parkinson’s disease, including respite care, training, and mental health resources.
   3.  Of the moneys appropriated in this section, $1,000,000 shall be allocated to establish the state plan to address neurodegenerative diseases required under section 135.196, subsection 5, as enacted by this Act.
    Sec. 3.  INITIAL STATE PLAN.  The department shall publish on the department’s internet site the initial state plan required under section 135.196, subsection 5, as enacted by this Act, on or before October 1, 2027. The department shall make a draft plan available for public comment at least thirty calendar days before publication.
    Sec. 4.  EFFECTIVE DATE.  This Act takes effect October 1, 2026.
EXPLANATION
The inclusion of this explanation does not constitute agreement with
the explanation’s substance by the members of the general assembly.
   This bill creates a Parkinson’s disease prevention, research, and care (PDPRC) fund under the control of the department of health and human services (HHS). Moneys in the PDPRC fund are appropriated to HHS to be used to (1) award grants to public or private entities for purposes specified in the bill, including to support research on Parkinson’s disease and related disorders and to support caregivers of individuals living with Parkinson’s disease, and (2) develop, implement, and revise a state plan to address neurodegenerative diseases (state plan), with an initial and primary focus on Parkinson’s disease.
   The bill requires HHS to establish a neurodegenerative disease advisory council within HHS to advise HHS on matters relating to grants and the state plan.
   The bill requires grant recipients to report annually to HHS, and requires HHS to report annually to the governor and general assembly.
   The state plan must be published on HHS’s internet site and must include elements set forth in the bill. The bill requires HHS to publish the initial state plan on or before October 1, 2027, with a draft plan available for public comment at least 30 days before publication.
   The bill authorizes HHS to collaborate and coordinate with public and private entities, other than federal, state, and local law enforcement agencies, to enhance the effectiveness of grants awarded under the bill, leverage available resources effectively, and avoid duplication. HHS may enter into agreements with such entities to facilitate data sharing and collaborative research, provided the data does not contain confidential information.
   For FY 2026-2027, the bill appropriates $3 million from the general fund of the state to the PDPRC fund.
   The bill takes effect October 1, 2026.