APDA’s Federal Advocacy Priorities
Priority: Strengthen Federal Investment in Parkinson’s Research
Chief Public Policy Officer
Federal funding for Parkinson’s research remains far below what is needed to spur breakthroughs in prevention, diagnosis, treatments, and ultimately cures. With the population aging and no therapies available to stop disease progression, increased investment is essential.
Why It Matters
- The number of people in the US living with PD is expected to double by 2040.
- Adjusted for inflation, PD costs the U.S. more than $60 billion annually, far exceeding current federal research investment.
- New discoveries—including a validated biomarker—mean we are closer than ever to transformative treatments.
Our Ask to Congress
- Grow federal investment in Parkinson’s research to at least $600 million annually by 2028 to reflect the true burden and urgency of the disease.
Priority: Advance the National Parkinson’s Project
In 2024, Congress passed the National Plan to End Parkinson’s Act, creating the first-ever federal initiative aimed at preventing, treating, and ultimately curing Parkinson’s disease.
The Project brings a whole-of-government approach to PD by:
- Developing a coordinated national strategy to prevent, diagnose, treat, and cure Parkinson’s.
- Aligning Parkinson’s research and services across federal agencies.
- Encouraging the development of safe, effective treatments and improving early diagnosis.
- Reviewing the health and caregiving impact on families affected by PD.
The Parkinson’s Advisory Council
The law also created a federal council that will:
- Evaluate the implementation and outcomes of the National Parkinson’s Project.
- Recommend improvements to prevent, diagnose, treat, and cure PD.
- Report annually to Congress on progress and remaining needs.
Our Ask to Congress
- Urge HHS and the White House to seat the NPP Advisory Council.
Priority: Parkinson’s Disease and Veterans
The Department of Veterans Affairs’ Parkinson’s Disease Research, Education, and Clinical Centers (PADRECCs) provide healthcare for more than 110,00 Veterans living with PD.
Why it Matters:
- Veterans may be at an increased risk of PD because of their service.
- Growth in the Veteran population living with PD will require additional need for PADRECC services.
Our Ask to Congress:
In November 2025, APDA was pleased to announce its first legislative win with the passage of the government funding bill which included $16 million in dedicated funding for the PADRECCS. This is a $1.5 million increase over FY 2025 levels. APDA will continue to advocate for increases in PADRECC funding to ensure that funding is not only sustained but grows to meet the needs of Veterans living with PD.
Priority: Parkinson’s Disease and the Department of Defense
Between FY 1997 and FY 2024, over $525 million in total funding was dedicated to the Department of Defense (DOD) Parkinson’s Research Program. The program was designed to support high impact PD research that alters disease progression, improves disease symptoms, and develops treatments that benefit service members and their families, Veterans, and the general public. Unfortunately, the program was cut in March 2025.
Why it Matters:
- PD affects an estimated 110,000 Veterans
- Peer-reviewed studies identified military service-related risk factors associated with the development of PD, including:
- Environmental hazards
- Traumatic brain injury
- Depression
- Prolonged physiological and mental stress
- Repeated or prolonged disturbed sleep
- Prolonged or repeated autonomic nervous system disruption
Our Ask to Congress:
- Restore the Parkinson’s Disease Research Program with a $25 million commitment in FY 2026.
Priority: Parkinson’s Disease and Paraquat
Scientists have determined that Parkinson’s is most likely caused by a combination of genetic and environmental factors. Paraquat, used in commercial herbicides, has been linked to an increased risk of Parkinson’s disease.
Why it matters:
- Paraquat is banned in 70 countries worldwide, including China and the UK, which manufacture it and sell it to the US.
- Reducing and eliminating exposure to Paraquat can reduce Parkinson’s disease risk.
Our Ask to Congress:
- Ban paraquat
Priority: National Neurological Conditions Surveillance System
In 2016, Congress authorized the Centers for Disease Control and Prevention (CDC) to develop the National Neurological Conditions Surveillance System (NNCSS) as part of the 21st Century Cures Act.
Why it Matters:
- State surveillance efforts, via registries and other methods, are not standardized and frequently go unfunded.
- A National Neurological Conditions Surveillance System represents an opportunity collect the following data points:
- Prevalence (number of people with various neurological conditions).
- Mortality (number of deaths) from neurological condition.
- The system will also help clarify variances in prevalence, mortality, and incidence by
- Demographics (e.g., age, sex, race/ethnicity).
- Geography (e.g., region, state).
- Other factors (e.g., presence of other diseases).
Our Congressional Ask:
$5 million in funding for FY 2026
Priority: First Responders and Parkinson’s Disease
APDA is proud to collaborate with the first responder community on two key legislative proposals:
- Parkinson’s Protection for Fire Fighters Act of 2025
- The bill officially establishes PD as one of the “certain illnesses and diseases deemed to be proximately caused by employment in fire protection activities.” APDA is proud to support fire fighters who are exposed to numerous neurotoxic chemicals as they do their vital work.
- Supporting Blue Envelop Programs Act
- The bill provides federal funding to support, expand, and create Blue Envelope Programs across the country. APDA is proud to support initiatives, like Blue Envelop programs, which are a critical step toward safer, more informed interactions between first responders and people living with Parkinson’s disease, as well as those living with other cognitive disorders that make communication difficult.
Priority: Access to Care and Parkinson’s Disease
APDA is proud to collaborate with coalitions focused on improving access to care via several key legislative proposals:
- Access to Genetic Counselors Act
- The bill recognizes genetic counselors as Medicare providers and reimburses their services at 85% of the cost of a physician. APDA is a proud member of a broad coalition of academic medical centers, clinician groups, graduate programs, health and hospital systems, patient advocacy groups, and individual genetic counselors support this bipartisan, bicameral effort.
- Extension of Medicare Coverage for telehealth
- The FY 2026 Funding Bill included an extension of Medicare telehealth benefits through January 30, 2026. APDA is a proud member of the Alliance for Connected Care which is advocating for a long-term telehealth fix to ensure stability and protect access to telehealth services.