State legislatures are great incubators for change, and they can play a pivotal role in accelerating research and ensuring quality of life for people living with Parkinson’s and their families.

The Michael J. Fox Foundation is advocating for legislation in over a dozen states this year — Arizona, California, Colorado, Connecticut, Delaware, Hawaii, Illinois, Indiana, Iowa, Louisiana, New Jersey, New York, Maine, Massachusetts, Pennsylvania and South Carolina.

Most state legislative sessions are short — about 3-6 months — which means many 2024 sessions are already halfway over. Have you urged your lawmakers to prioritize Parkinson’s yet? Read on to find out what we’re working on in your state and reach out to your legislators before it’s too late! 

Funding Parkinson’s Research 

Establishing or increasing state funding for Parkinson’s research can lead to breakthroughs that will improve the lives of people living with Parkinson’s disease and contribute to the search for a cure. 

Since 2010, MJFF has been dedicated to building, strengthening and expanding the infrastructure for a landmark longitudinal study known as Parkinson’s Progression Markers Initiative (PPMI). With nearly $450 million invested in PPMI, 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. 

Public sector partnership and investment in PPMI is needed to accelerate research for earlier diagnosis, better treatments and ultimately, a cure for Parkinson’s disease. This year, the MJFF Public Policy team is working to secure Parkinson’s research funding in California, Connecticut, Illinois and Pennsylvania.  

Creating Parkinson's Research Registries 

Statewide, population-based registries are used to measure the incidence and prevalence of Parkinson’s disease. These research registries are rich data sources that can fuel research and help researchers, clinicians and policymakers better understand Parkinson's and how to treat it.

Passing legislation to create state-level registries aims to: 

• Identify high-risk groups and support patient contact studies. 

• Determine an accurate rate of incidence and prevalence of Parkinson’s disease by state. 

• Study patterns of Parkinson’s disease over time. 

• Improve understanding of potential links between Parkinson's and risk factors such as pesticide usage and military service. 

To date, there are existing or recently established Parkinson’s research registries in California, Maryland, Missouri, Nebraska, Nevada, Ohio, South Carolina, Utah, Washington and West Virginia. This year, MJFF is pursuing Parkinson’s research registry legislation in Connecticut, Massachusetts, New Jersey and New York. 

In early April, thanks to our legislative champions and public policy advocates, the New York State Senate unanimously voted to pass S.4674A, bringing New York one step closer to creating a Parkinson’s research registry. The legislation must pass in the Assembly before heading to Governor Kathy Hochul’s desk for signature. If you live in New York, now is the time to ensure that your Assemblymember supports this legislation (A.5803B). Find your Assemblymember here and reach out to their office to ask for their support on behalf of the Parkinson’s community.  

Increasing Access to Biomarker Testing 

Biomarker testing is the analysis of a person’s tissue, blood and other substances, known as biomarkers, that can provide information about a disease. While most current applications of biomarker testing are in oncology and autoimmune diseases, there is research underway to benefit other patients including those with neurological conditions like Parkinson’s. 

While biomarker testing can provide people with critical information about their health, insurance coverage is failing to keep pace with innovation. We urge states to take legislative action to require health plans, including Medicaid, to cover biomarker testing so that more individuals have access to this important health care tool. 

Legislative action on biomarker testing access coincided with the MJFF’s groundbreaking news, announced in April 2023, that researchers have discovered a new biomarker tool that can reveal a key pathology of the Parkinson’s: abnormal alpha-synuclein — known as the “Parkinson’s protein” — in brain and body cells. 

Last year, twelve states passed legislation related to expanding insurance coverage for biomarker testing — Arizona, California, Georgia, Kentucky, Louisiana, Maryland, New Hampshire, Nevada, New Mexico, New York, Oklahoma and Texas. In 2024, MJFF is pursuing legislation in Colorado, Connecticut, Hawaii, Indiana, Iowa, Maine and Pennsylvania. 

Expanding Genetic Testing Protections 

Federal law prohibits health insurers from using information learned through genetic testing, such as a gene mutation linked to neurological disorders, to deny coverage or engage in price discrimination. These protections, however, do not extend to life insurance, long-term care insurance and disability insurance coverage. 

States can fill this gap by passing legislation to prohibit discrimination based on genetic predisposition for life insurance, long-term care insurance and disability insurance coverage. These laws should address the refusal to issue or renew a policy, charging increased rates or restricting any length of coverage and requiring genetic testing before approving coverage. No one should face discrimination in pursuit of their health care needs. 

MJFF is working to pass genetic testing protections legislation in Arizona, Delaware, Iowa, Louisiana, New York and South Carolina this year. 

Improving Access to Care, Increasing Environmental Transparency and More 

MJFF also advocates for state policies and programs that: 

• Improve prescription drug access and affordability. 

• Address social determinants of health such as access to stable housing, reliable transportation and healthy foods. 

• Remove barriers to behavioral health services, including expanding the behavioral health workforce. 

• Increase environmental transparency, such as requiring states to publish locations where toxic chemicals have been approved for use. 

Inspired? Act Now! 

Use our simple online form to contact your lawmakers and urge them to support these policy changes now. It only takes a few minutes — and yet, your advocacy can help effect real change. 

If you live in or work in any of the states we're working in this year, please reach out to us at policy@michaeljfox.org for more specifics on active bills.