When individuals consider Parkinson’s disease (PD), notable personalities such as Michael J. Fox and Muhammad Ali typically come to mind. However, the actual representation of Parkinson’s is considerably more varied than its media depiction, exposing substantial gaps in our knowledge due to the underrepresentation of Black, Latinx, Asian, and Indigenous communities in scientific research.

In clinical trials funded by the NIH, merely 8% of participants are Black and only 4% are Hispanic, which is significantly less than their respective proportions in the U.S. population. This disparity represents more than just a statistical shortfall; it reflects systemic racism that obstructs equal access to healthcare and research opportunities.

These inequalities are striking in clinical results. Black Americans frequently receive diagnoses of Parkinson’s at more advanced stages, missing opportunities for early intervention, whereas Latinx patients often do not have adequate access to neurologists or specialists in Movement Disorders. The origins of these inequalities are not rooted in biology; they arise from deep-seated obstacles within healthcare and research infrastructures.

Karen L., a Black woman featured in The PD Movers by the American Parkinson Disease Association (APDA), illustrates these difficulties. For years, her symptoms were wrongly attributed to aging or anxiety until her relentless advocacy resulted in a diagnosis of Parkinson’s. She remarked, “Had I been aware earlier, I could have fought it sooner. Yet, conversations around Black women and Parkinson’s are seldom held.” Regrettably, numerous communities of color have experiences similar to Karen’s of ignored or misdiagnosed symptoms, while clinical trials inadequately incorporate them.

The NIH’s Strategic Plan for Diversity, Equity, Inclusion, and Accessibility (DEIA) offers a promising approach moving forward. Nevertheless, its implementation in Parkinson’s research is inadequate. Researchers can obtain complete funding and publish results without including underrepresented groups or specifying study participants, a significant deficiency in both science and equity.

What makes the call for change more urgent now than ever? NIH Director Dr. Anita Bhattacharya informed Congress about proposed budget reductions that threaten vital research, particularly in addressing health disparities. The budget proposal for Fiscal Year 2026 aims for nearly a 40% cut in NIH funding, jeopardizing “decades of progress” and disproportionately impacting underserved populations.

There are practical solutions available. Funding organizations like the NIH must enforce accountability, ensuring the inclusion of diverse participants and the transparent reporting of demographic data in trials. Journals should reject studies that are incomplete or unrepresentative. Additionally, researchers should directly engage communities by utilizing accessible, multilingual materials and establishing trust through local collaborations.

Furthermore, investing in established programs like Dance for PD® in Mandarin or Spanish, or culturally specific support groups for Parkinson’s, is crucial. These programs challenge stigma, raise awareness, and enhance education and access to care. However, depending on volunteers and unstable funding, they require reliable, long-term financial support.

Achieving health equity in Parkinson’s research necessitates proactive leadership, ongoing community collaborations, policy advocates, caregivers, Parkinson’s patients, healthcare professionals, and researchers to ensure that science is inclusive and representative of all those living with Parkinson’s, rather than just historically privileged groups.

Parkinson’s does not make distinctions; research efforts should not either.

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Vicky Chan is the national manager of programs and community engagement at the American Parkinson Disease Association (APDA). She works on improving culturally sensitive outreach and nurturing long-term partnerships with underrepresented communities to expand access to Parkinson’s resources across the nation. With a wealth of grassroots organizational experience, Vicky is committed to enhancing health equity through more inclusive public health strategies.