After a string of successes in 2023, The Michael J. Fox Foundation’s (MJFF) Public Policy team approached this year’s state legislative sessions with two goals: To build on wins to date and to introduce new ways for lawmakers to support the Parkinson’s community in their states. 

This year, we saw an expansion in state Parkinson’s registries, improved insurance coverage for biomarker testing, new genetic testing protections, increased environmental advocacy and more.  

With most legislative sessions now closed, join us in celebrating our wins and laying the groundwork for continued advocacy in 2025. Don’t forget to sign up to get opportunities to advocate in your home state! 

Creating Additional Parkinson's Research Registries

Statewide population-based registries are rich data sources that can fuel research and help researchers, clinicians and policymakers better understand Parkinson's and how to treat it by: 

• Identifying high-risk groups and supporting patient contact studies. 

• Determining accurate incidence and prevalence rates by state.  

• Studying patterns of the disease over time.  

• Improving understanding of links between Parkinson’s and risk factors such as pesticide exposure and military service.  

In 2022, when MJFF began lobbying state lawmakers and rallying local advocates in earnest, just four states had Parkinson’s disease registries. Today, that number is up to 13, with Connecticut and New York passing legislation this year! Work in Massachusetts and New Jersey will continue as their legislative sessions are ongoing. 

Increasing Access to Biomarker Testing  

Analysis of tissue, blood and other substances, known as biomarker testing, can provide patients with critical information about their health. While most applications of biomarker testing are in oncology or autoimmune diseases, there is research underway to benefit people living with Parkinson’s and other neurological diseases.  

We urge states to require health plans, including Medicaid, to expand access to this important health care tool by covering the cost of biomarker testing for all conditions, including Parkinson’s. This year, Colorado, Connecticut, Florida, Indiana and Iowa passed legislation to do so, bringing the total number of states ensuring access to biomarker testing to 19.

Expanding Genetic Testing Protections

Federal law prohibits health insurers from using information from genetic testing — like the presence of a gene mutation linked to a neurological disorder — to deny coverage or engage in price discrimination. However, these federal protections do not extend to life insurance, long-term care insurance and disability insurance coverage. The good news: Local lawmakers can fill this gap for their constituents by passing state legislation.  

Louisiana did just that, enacting a law that prohibits insurers from increasing premiums or denying, canceling, limiting or refusing to renew coverage based on genetic testing results. In addition, Nebraska passed the Genetic Information Privacy Act which prohibits direct-to-consumer testing companies from disclosing genetic test results to insurers and employers without consent. 

New This Year: Advocating for Environmental Policy Change

For more than a decade, MJFF has joined advocates and partner organizations across the country to call for the ban of harmful chemicals, including trichloroethylene and paraquat, which may increase Parkinson’s risk by up to 500 percent. 

For the first time this year, MJFF took our environmental advocacy to the state level by joining forces with the Environment Working Group’s outpost in California, where the country’s first state-level ban of paraquat has been proposed. 

The California State Assembly passed the bill earlier this year, with state Senate deliberations expected to occur during summer 2024. As the bill moves through the legislative process, MJFF will engage local advocates in California to bolster our efforts and champion this bill all the way to the governor’s desk. Even more, MJFF will work to empower states nationwide to follow California’s lead and safeguard public health through transformative environmental change in 2025 and beyond. Stay tuned! 

New This Year: Funding Parkinson’s Research

In 2024, MJFF embarked on a new effort to secure state funding for Parkinson's research by advocating for public sector partnership and investment in our landmark longitudinal study, the Parkinson’s Progression Markers Initiative (PPMI). 

MJFF has been building, strengthening and expanding PPMI since 2010. With nearly $450 million invested to date, the study has 50 clinical sites in 12 countries and more than 2,500 participants. An additional 40,000 volunteers also share data with PPMI through its online platform.  

MJFF introduced this effort in California, Connecticut, Illinois and Pennsylvania due to the presence of established clinical sites in these states, making it possible to hit the ground running. While these states did not invest in Parkinson’s research through PPMI this year, this is just the beginning of a long-term endeavor.   

Inspired? Act Now!

Join our Parkinson’s Policy Network to get access to opportunities to advocate for policy change to accelerate science, expand access to care and improve everyday life for people living with Parkinson’s in your state now, and in the future.