The American Parkinson Disease Association (APDA), The Michael J. Fox Foundation for Parkinson’s Research (MJFF), and the Parkinson’s Foundation have outlined key priorities and desired outcomes to help inform the first National Plan to End Parkinson’s, as the federal Advisory Council charged with developing the Plan meets for the second time.
Each organization recently submitted recommendations to the National Institutes of Health’s Request for Information (RFI) on the National Plan to End Parkinson’s. The RFI, issued by the National Institute of Neurological Disorders and Stroke (NINDS) on June 23, closed on August 22. It offered people living with Parkinson’s and atypical parkinsonisms, families, care partners, clinicians, researchers and organizations the opportunity to identify the most important gaps and priorities for action in research, care and services. The responses will be shared with the Advisory Council on Parkinson’s Research, Care, and Services, which advises the Secretary of Health and Human Services.
The RFI comes at a moment of growing momentum on Parkinson’s disease and its environmental triggers – including California’s recent announcement that it will phase out paraquat, a widely used herbicide that research has linked to increased risk of Parkinson’s disease, following similar bans in Vermont and more than 70 countries.
In a joint statement, Anne Hubbard, chief public policy officer, American Parkinson Disease Association (APDA); Dan Feehan, chief policy and government affairs officer at The Michael J. Fox Foundation; and Andi Lipstein Fristedt, Parkinson’s Foundation executive vice president & chief strategy and policy officer, said:
“The Request for Information was an important opportunity for the Parkinson’s community to tell the federal government what a meaningful National Plan must deliver for the 1.2 million Americans living with Parkinson’s and atypical parkinsonisms. Our organizations submitted detailed recommendations spanning research, care and services. We appreciate the commitment that leaders at HHS, NIH and NINDS have shown to developing this plan in partnership with the Parkinson’s community. We look forward to continuing to work alongside the federal agencies and the Advisory Council to ensure the voices of people living with Parkinson’s, their families and their care partners shape — and see their priorities reflected in — every stage of the National Plan.”
The three organizations’ RFI responses are organized around six high-impact goals and desired outcomes for the National Plan by 2035:
Reduce the financial impact of Parkinson’s on families living with Parkinson’s.
Desired Outcome: By 2035, reduce the financial hardship experienced by people living with Parkinson’s disease and their care partners through affordable access to care and services, stronger caregiver support, workplace accommodations, and policies that help offset the direct and indirect costs of the disease and strengthen long-term economic security.
Improve health outcomes for, and the quality of life of, individuals living with Parkinson’s.
Desired Outcome: By 2035, ensure timely diagnosis and access to high-quality, coordinated, person-centered care and supportive services that optimize health, function, independence, and quality of life for people living with Parkinson’s disease.
Prevent Parkinson’s, ameliorate symptoms, and slow or stop progression.
Desired Outcome: By 2035, effective mitigation efforts are in place to reduce environmental and toxic exposures that lead to Parkison’s, and more people living with Parkinson’s benefit from medical and non-medical interventions that prevent disease, reduce symptoms, and slow or stop progression.
Improve the quality of care provided to beneficiaries with Parkinson’s who receive coverage through a federally-funded health care program, such as the Medicare program under title XVIII of the Social Security Act or the Medicaid program under title XIX of such Act.
Desired Outcome: By 2035, beneficiaries with Parkinson’s who receive coverage through federally funded healthcare programs have access to coordinated, high-quality, person-centered care that improves outcomes, reduces avoidable complications, supports independence throughout the disease course, and is aligned with the evidence base.
Research the association between environmental triggers and Parkinson’s to help reduce exposure to potential triggers.
Desired Outcome: By 2035, environmental and occupational factors associated with Parkinson’s are better understood, monitored, and mitigated, resulting in stronger evidence to inform prevention strategies and public policy, reduced exposure to potential risk factors, and ultimately fewer new cases of Parkinson’s disease.
Research and better understand the underlying factors contributing to Parkinson’s.
Desired Outcome: By 2035, increased federal investment in Parkinson’s disease research funding will accelerate scientific discoveries that deepen understanding of the biological, genetic, environmental, and clinical factors underlying Parkinson’s, leading to the development of therapies that prevent, slow, stop, or reverse disease progression and ultimately enable a cure.
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