Racial Inequalities in the Treatment of Parkinson Disease - PMD Alliance

Interview with: Disep Ojukwu, MD, MBA, MPH 

How Do Racial Inequalities Affect Health?  

When Disep Ojukwu, MD, MBA, MPH saw the data with her colleagues, they knew: this is not something to keep quiet about.  

As she began reviewing the statistics around who receives access to Parkinson disease treatments and who doesn’t, she realized there was a recurring pattern: large racial inequalities that put Black patients at greater risk. Propelled by the events and climate of 2020, she and her coauthors decided to pull the unsettling findings together in a single paper to elucidate the problems that exist and begin working toward solutions. It was time to give voice to the inequalities not only in the Parkinson’s niche, but across the healthcare industry. 

Black girl holding racism is a pandemic sign

Understanding the Barriers 

“The data were clear,” Dr. Ojukwu explained. “Consistently, independent studies revealed that Black individuals with PD weren’t getting the treatment they needed, when they needed it, compared with White individuals.” 

As she probed deeper, she discovered the following inequalities (among others) that are published in the current literature by other researchers: 

  • While the number of White individuals with Parkinson disease is nearly two times the number of Black individuals with the disease, Black patients have a higher risk of death after adjusting for age, sex, comorbidity, socioeconomic status, and treating physician specialty. One reason for this is Black individuals overwhelmingly receive delayed diagnoses. Even if they do access treatment, it often isn’t until after their disease has progressed, heightening their risk of mortality. 
  • Black patients are eight times less likely than White patients to receive deep brain stimulation (DBS), a treatment option that has been effective for PD for more than 20 years.
  • Research is crucial to moving toward a cure for PD. But most clinical trials don’t report the racial composition of their participants. The data shows that, even when they do, less than 2% of participants are Black 

The Roots of Health Inequalities in the United States  

As history has made clear and Dr. Ojukwu explains, “racial disparities are not new and they exist across the globe.” In the United States, current inequities are rooted in our past. For example, in what became known as the Tuskegee Syphilis Study, beginning in 1932 and continuing until 1972, the United States Public Health Service misled over 600 Black men, mostly sharecroppers in Tuskegee, Alabama, in a human-subjects medical experiment. As Dr. Ojukwu recounts, “They were promised free health care but, instead, were given placebos so that scientists could study their blood. None of the men were told that they had syphilis. Even after penicillin became the standard treatment for syphilis in 1947, the men were intentionally denied treatment.” This study, one of many instances of foul medical play, sowed the seeds of distrust of the healthcare system by many Black communities. 

We need to create a new paradigm. 

How to Move Towards Health Equity 

Dr. Ojukwu believes change is possible. “Shifting to greater health equity is a marathon, not a sprint,” she told us, “but, together, we can create change through consistent, focused efforts and an innovative spirit.” She went on, “I applaud PMD Alliance for having this conversation and wanting to be part of the solution. Because racial discrimination is deeply embedded in the fabric of our system and the answers are not simple, this will require many people, across disciplines, joining together over time to create lasting change.” We must all be part of the shift. 

Man holding Equal Rights sign

Everyone Can Play a Role in Finding Solutions 

“I live in Northern California,” Dr. Ojukwu said, “and what I’ve learned from my community is that the people here, in the Bay Area, are willing to face these challenging issues squarely to bring about long-overdue transformation. They’re engaging in grassroots efforts and are determined to ensure that equity, diversity, and inclusion are mainstay values in our society.” 

She believes that creating change also involves partnerships. Parkinson’s organizations have the resources. The question is: how do they get them into the hands of people who need them? “It’s about getting proximate and listening,” she says, “rather than serving from a distance. I encourage these organizations to foster partnerships with local leaders, such as faith-based clergy. These trusted entities can serve as a bridge to build trust where trust is lacking from a history of racial discrimination and social marginalization. These key relationships can also aid in transmitting important healthcare knowledge to underserved communities.” 

Building a Better Tomorrow, Today 

On an individual level, Dr. Ojukwu insists that caring about these disparities matters, even if you’ve never faced them yourself. “We live in a global community that is connected in ways that were non-existent before,” she says. “What affects one person eventually affects all of us. We don’t have the luxury of deafening our ears to the plight of others, so it behooves all of us to stand up against injustice wherever it exists for the betterment of all.” 

As a medical doctor, Dr. Ojukwu chooses to engage in these difficult conversations because, as she says, “it is the right thing to do.” “I, too, have a dream,” she tells us, “that one day all patients, regardless of racial or ethnic origin, will be treated with the utmost respect and value that they deserve.” 

May we behold that dream together, taking action one small step at a time toward the world we envision. 

Deep dive with Dr. Ojukwu's wHolistic™ talk about Racial Inequities in the Treatment of Parkinson Disease

Dr. Disep Ojukwu

Disep Ojukwu, MD, MBA,MPH is a volunteer research assistant in the Halpern-Malenka Laboratory at Stanford University. Under the direction of Dr. Casey Halpern, Dr. Ojukwu focuses on health disparities in movement disorders, particularly Parkinson’s disease and essential tremor. She received her MD/MBA degree from St. George’s University School of Medicine and her Master of Public Health degree from Loma Linda University School of Public Health as a triple major in epidemiology, international health, and biostatistics. She also obtained her Bachelor of Science degree in Biochemistry from UCLA. Before attending medical school, she worked as a public health statistician and was actively involved in evaluating health disparities among African American communities in San Bernardino County, California.

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