Advocates offer guidance for national plan to end Parkinson’s

A trio of leading advocacy organizations has offered guidance to the U.S. federal government on key priorities for a national plan to end Parkinson’s disease.

In June, the National Institute of Neurological Disorders and Stroke (NINDS), a branch of the National Institutes of Health (NIH), issued a request for information seeking feedback on major gaps in current Parkinson’s care and goals for future initiatives. In response, three groups — the American Parkinson Disease Association (APDA), The Michael J. Fox Foundation for Parkinson’s Research (MJFF), and the Parkinson’s Foundation —  offered a set of key priorities and goals.

“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,” Anne Hubbard, chief public policy officer at APDA; Dan Feehan, chief policy and government affairs officer at MJFF; and Andi Lipstein Fristedt, executive vice president and chief strategy and policy officer at the Parkinson’s Foundation, said in a joint statement.

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Easing financial hardship, improving outcomes among key goals

The organizations said they submitted “detailed recommendations spanning research, care and services” that are organized around a set of “high-impact goals.”

One key goal for the plan, according to the groups, is to reduce the financial hardship for people with Parkinson’s and their families. This includes initiatives to improve access to affordable services, strengthen caregiver support, expand workplace accommodations, and implement policies to offset the direct and indirect costs of the disease.

Other goals are to improve health outcomes and quality of life for patients by ensuring timely Parkinson’s diagnosis and access to high-quality care and support services; find ways to ease Parkinson’s symptoms, slow or stop disease progression, or prevent the disease altogether; improve the quality of care provided through federally funded programs; research the links between environmental exposures and Parkinson’s risk and implementing programs aimed at limiting risk; and increase federal investment in research to understand the underlying causes of Parkinson’s.

The recommendations will be reviewed by the Advisory Council on Parkinson’s Research, Care, and Services, which advises the Secretary of Health and Human Services (HHS). The council, which is charged with developing a national plan to end Parkinson’s, recently met for the second time.

“We appreciate the commitment that leaders at HHS, NIH and NINDS have shown to developing this plan in partnership with the Parkinson’s community,” the organizations’ leaders said. “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.”