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Big “Wins” and Next Steps in State Advocacy: Your Parkinson’s Advocacy Is Making a Difference

Maryland Governor Wes Moore with Julia Pitcher

The Michael J. Fox Foundation’s (MJFF) public policy team began engaging on state-specific legislation in 2022 and has since overseen numerous legislative victories. Each state has their own legislative body that introduces, debates and votes on proposed laws. On a national level, Congress (comprised of the House of Representatives and the Senate) passes bills that are then sent to the President to either sign into law or veto. In states, a legislative body (which is typically bicameral — meaning that the legislature consists of two separate legislative chambers or houses) passes bills that are sent to a governor to either sign into law or veto. 

As most state legislatures have concluded their legislative sessions for 2023, we are able to review the wins, losses and important lessons learned in state capitols across the country. 

Parkinson’s Research Registries 

Graphic for 2023 targeted states for registry legislation

A resource for better understanding Parkinson’s disease are research registries. By collecting health information on individual cases of Parkinson’s, researchers can monitor and identify connections to environmental and chemical exposures. This could help accelerate research and progress toward a cure. In 2023, we pursued legislation related to Parkinson’s research registries in 10 states — with five passing legislation! Maryland, Missouri, Nevada and Ohio passed bills to establish Parkinson’s research registries, while Nebraska, home of the nation’s first Parkinson’s research registry, included provisions to increase funding for their registry as part of their annual state budget. 

Access to Biomarker Testing 

Over a dozen state legislatures have introduced legislation to expand health care coverage for biomarker testing. To date, the following state legislatures have passed legislation to expand access to biomarker testing: Arizona, Georgia, Kentucky, Louisiana, Maryland, Nevada, New Mexico, New York, Oklahoma and Texas. 

This legislative action to expand access biomarker testing coverage coincides with the Fox Foundation’s groundbreaking news, announced in April, 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. You can read more about this extraordinary scientific breakthrough, and the accompanying study posted in The Lancet Neurology, here.

Preventing Genetic Testing Discrimination 

Genetic tests provide helpful information for patients as they make life decisions, including securing a life insurance policy for themselves and/or their families. While federal laws are in place that prohibit health insurers from using information learned through genetic testing, such as a gene mutation linked to neurological disorders, to deny health care coverage or engage in price discrimination, these protections do not extend to life insurance, long-term care insurance and disability insurance coverage. Several state legislatures have introduced bills that would extend protections against discrimination based on the results of a genetic test to additional types of insurance policies. Nearly a dozen states introduced legislation this year alone — with Tennessee enacting a bill extending these protections to life insurance.

You can contact us at Here’s to the work ahead! 

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