The Michael J. Fox Foundation has launched a public policy department to advance government initiatives that improve the lives of people with Parkinson's, their families and caregivers. This department will advocate for policies that accelerate the development of new Parkinson's disease (PD) therapies and increase access to health care services for those living with PD today.
Historically, the Parkinson's Action Network (PAN) has served as the unified voice of the PD community on public policy and advocacy issues. Key PAN staff and programs are transitioning to MJFF to advance this important work. During its tenure, PAN helped to increase federal research funding for PD through the National Institutes of Health and the Department of Defense; was part of a class action lawsuit against the Center for Medicare and Medicaid Services to expand physical, occupational and speech-language therapy services for people with PD; and worked to enact legislation that created the Morris K. Udall Centers of Excellence for Parkinson's Disease Research.
Advocacy has been an important part of MJFF's mission throughout its history. The Foundation has contributed funding and resources to public policy work to serve the PD community, and it also organizes an extensive network of grassroots advocates who support clinical trial participation and fundraise for Parkinson's research. This unification will allow MJFF to provide a cohesive research and policy effort to enhance these advocacy priorities and further the policy work of PAN. Leadership from MJFF in this area can accelerate PD research, bring new treatments to market quickly and increase quality of life.
Representatives of state, regional and national PD organizations who previously served on the PAN Board are joining the Foundation's new Unified Parkinson's Advocacy Council, providing ongoing counsel to ensure MJFF remains the unified voice of the PD community on all policy matters. A Public Policy Council made up of experts will provide guidance and advice on policy strategies. Additionally, the Foundation launched a dialogue with patients and close supporters of both organizations in early 2016 to ensure its programmatic activity reflects the top public policy concerns of the community.
To learn more about MJFF's work in this area, read our FAQ's below or click on our additional resources to the right. Stay tuned for updates as MJFF's public policy programming grows.
How will this integration support drug development and research toward a cure?
Since MJFF launched in 2000, the landscape of Parkinson's disease drug development has evolved significantly. At launch, the state of Parkinson's research as a whole lay primarily in basic research — the field held only a rudimentary understanding of the biology of PD, little biomarker development was taking place, researchers were working with the (now-eclipsed) premise that dopamine replacement alone could meet Parkinson's patients' medical needs and few promising drug candidates were advancing toward clinical testing.
Today, more PD drug candidates are reaching late-stage clinical testing and entering complex regulatory and reimbursement approval processes. For some untreated symptoms of Parkinson's disease, such as cognitive decline, regulatory pathways may not yet exist.
Further, government funding for the National Institutes of Health (NIH) — U.S. taxpayers' vehicle to finance basic scientific and medical research — does not match current research needs. The NIH is the largest funder of PD research, and changes to its budget put more responsibility on private companies for discovery and validation.
As companies consider costly research investments, a coordinated and streamlined regulatory and reimbursement strategy is a valuable asset, alleviating some of the risk associated with Parkinson's drug development.
What issues will MJFF's new public policy team focus on?
Is PAN moving to NYC?
What is the timeline for the unification?
What will happen to PAN's Grassroots Leaders program?
How will MJFF's new public policy department work with the rest of the PD community?
What's happening to the PAN website?
How can I take action on policy issues?
Announcing MJFF Public Policy and Advocacy Work
Read our white paper on community priorities for PD Policy.