Fall / Winter 2023 | Policy 17
Left : Barbara Zimmerman , a community advocate and care partner to her husband Jim , addressed New York legislators last spring .
Right : MJFF ’ s director of state government relations Julia Pitcher greeted Maryland governor Wes Moore . Maryland established a Parkinson ’ s registry and passed biomarker testing legislation this year .
Increasing Access to Biomarker Testing
Biomarkers for Parkinson ’ s — including the new test discovered this year — will have significant research implications .
MJFF joined a coalition advocating for legislation to require health insurance plans to cover the cost of testing for all diseases with an available biomarker — a list that now includes Parkinson ’ s . As a result , 12 states are slated to remove this barrier to biomarker testing .
Expanding Protections against Genetic Testing Discrimination
Opting to receive genetic testing is a personal decision , and increasingly , something people turn to for critical information .
Federal law prohibits health insurers from using that information to deny coverage or engage in price discrimination , but these protections do not extend to life , long-term care or disability insurance . To fill this gap , MJFF worked with nearly a dozen state legislatures to expand protections . Only Tennessee was successful , but other states will consider similar bills in 2024 .
Meanwhile , in Our Nation ’ s Capital ...
On the federal level , The National Plan to End Parkinson ’ s Act was reintroduced this spring . This bill — the first solely dedicated to ending Parkinson ’ s — was filed last Congress but did not come up for a vote . As this newsletter went to print , the bill boasts over 110 total co-sponsors , thanks in part to the 19,000 advocates who urged their legislators to sign on . MJFF continues to secure additional sponsorship and support advocacy in key districts .
Bolstered by the energy of community advocates , these legislative efforts move us closer to a future without Parkinson ’ s . You can get involved too — visit michaeljfox . org / advocacy to learn more .