How many Black Americans live with Parkinson’s disease? The answer, as it turns out, is anyone’s guess.
Though Parkinson’s is the second most common neurodegenerative disease in the United States, data on how the disease impacts the Black community is sparse. There is not even a current estimate of how many Black Americans have Parkinson’s.
Why the knowledge deficit? The answer is multifaceted.
Lack of Clinical Trials Diversity
One major challenge is the underrepresentation of Black participants in clinical trials. Clinical research has led to important treatment options for controlling Parkinson’s symptoms. But trials have done little to shed light on how and why the disease affects Black Americans.
The vast majority of clinical testing focuses on people of white European ancestry. This underrepresentation of people of color in clinical trials is not limited to Parkinson’s research. But it’s especially limiting as the prevalence of Parkinson’s death and disability grows faster than that of any other neurodegenerative disease.
Health Equity Challenges
Health inequity also plays a role. Parkinson’s care in Black communities may be hindered by factors such as:
- Late-stage diagnosis and treatment
- Lack of access to medical specialists
- Reluctance to seek diagnosis and treatment, reflecting a lingering distrust of the health care system
Meanwhile, a national shortage of mental health professionals has patients of all races struggling to find help with the anxiety and depression that often accompany Parkinson’s disease. The problem is compounded for Black Americans, who often are more comfortable with professionals who understand the specific needs of Black patients.
With few Black patients seeking and receiving proper treatment for Parkinson’s and its comorbidities, the gap in information only grows.
Moving Toward Solutions
The number of people living with Parkinson’s is projected to reach 1.2 million by the end of the decade, making the effort to treat and cure this disease as critical as ever. But the nation and its policymakers must first understand how the disease impacts all patients, including Black Americans. Working together, policymakers and advocates can move toward solutions for increasing diversity in clinical trials, encouraging Black Americans to seek early diagnosis and – ultimately – ensuring access to timely Parkinson’s treatment.