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Looked Over, Left Behind: Black Americans Face Gaps in Parkinson's Care

Whether due to provider shortcomings, barriers to care, or a lack of awareness about the neurological disorder, experts worry Black individuals aren’t getting the help they need.

By Steven Ross Johnson, US News & World Report

The first signs that raised concerns for Halston Mathis about her stepfather, Wendell Gardner Jr., a former DC Superior Court judge, appeared a few years ago after he’d retired from the bench. She noticed him having hand tremors and problems with his voice, and then issues maintaining his balance.

“He told my mom that the pockets in his jeans were too tight, and that was why he could never get his hands in his pocket,” Mathis recalls. “That was why he said it was shaking.”

At first, Mathis and her family – including her stepfather, who was over 70 – assumed his symptoms were just a part of aging.

But in April 2020, Gardner was diagnosed with Parkinson’s disease and Lewy body dementia, one of the most common causes of dementia.

“It seems like two months after he was diagnosed his symptoms just tripled in severity,” Mathis says. “Everything became more intense.”

Mathis acknowledges her stepfather might have been diagnosed sooner had he not masked his symptoms. But she also contends clinicians initially assumed his symptoms were tied to his advancing age, which led to delays in testing him for a possible neurological disorder or referring him to a specialist, despite requests from her mother for more to be done.

“He could afford the care, they were just not giving him those options,” Mathis says. “My mom had to be very forceful to say, ‘Something is not right.’”

The challenges Mathis and her family experienced in trying to get her stepfather appropriate care are indicative of broader concerns that Black patients with Parkinson’s face – limited access to the resources and supports that would help detect and address problems at earlier stages.

Such concerns have prompted advocates and health care providers to try to raise awareness about Parkinson’s disease in the Black community, and to try to foster stronger provider-patient relationships that can lead to earlier testing and treatment.

“The onus is on the medical community,” says Dr. Chantale Branson, a neurologist with a specialization in movement disorders and an assistant professor of medicine at the Morehouse School of Medicine in Atlanta. “It’s about getting the word out and having these conversations outside of the medical office and talking with people within their community and trying to reach everyone.”

Recognizing the Problem

Multiple data sources point to lower rates of Parkinson’s disease among Black individuals compared with whites. Yet underdiagnosis may account for at least some of such overall shortfalls, with past studies indicating Black individuals were less likely than whites to receive a Parkinson’s diagnosis and to receive specialist care.

Research also indicates Black patients may be diagnosed at later stages, and that they suffer from poorer outcomes. For example, Black individuals with parkinsonism – a broader group of brain conditions that includes Parkinson’s disease – have been shown to experience greater disability and disease severity. Research also points to Black patients with Parkinson’s disease having higher rates of dementia and lower health-related quality of life than white patients, and being at higher risk of death from Parkinson’s.

Dr. Nabila Dahodwala, a professor of neurology at the Penn Medicine health system’s Pennsylvania Hospital, says a major challenge in addressing inequities related to Parkinson’s disease has been a lack of research specifically examining the epidemiology of neurological conditions like Parkinson’s within minority populations.

Nearly 1 million Americans live with Parkinson’s disease, according to patient advocacy organization the Parkinson’s Foundation, with around 90,000 new cases occurring annually. Yet there are currently no reliable estimates of the number of Black individuals with Parkinson’s in the US, experts say, nor of what share of the Parkinson's population is made up of individuals who identify as a racial or ethnic minority.

“It’s a tough process that if the patient or family member doesn’t recognize symptoms or does not think it’s affecting their life, and if the provider is not looking for symptoms, is not familiar with Parkinson’s disease, or is not comfortable with the exam, you’re not going to get the diagnosis,” Dahodwala says. “Without a simple test for it, it leads to a lot of variability in how people receive care.”

Dahodwala feels many clinicians have what she describes as “neurophobia” when it comes to addressing a possible neurological condition in their patients. She says providers can be uncomfortable counseling patients, conducting a neurological examination, or looking for signs that would prompt them to call for a specialist. That reluctance, combined with historical issues involving implicit racial bias among health care providers when assessing patients of color, can make it difficult for Black patients to have their concerns identified or to access appropriate care.

Another useful approach, she says, would involve creating a set of “red flag signs” for providers untrained in neurology to follow when evaluating a patient, helping them determine when to consult a specialist.

“We need a larger workforce, but also a workforce that’s more spread out across the country and not just in localized academic medical centers,” Dahodwala says.

A Need for Outreach

A study published in 2014 points to how attitudes can vary among racial and ethnic groups as to why a person may not seek Parkinson’s-related care. Language difficulties were identified as a perceived barrier among Chinese Americans, for example, while mistrust of the medical establishment was a concern among African Americans.

The same study also found a low level of knowledge about Parkinson’s disease among older Chinese American, African American, and white adults in the community, and that Chinese Americans and African Americans were more likely to perceive Parkinson’s disease as a normal part of aging – as was the case with Mathis’ stepfather.

Branson, of Morehouse School of Medicine, says such attitudes highlight some of the stigma that exists around Parkinson’s disease, which can make patients unwilling to talk about their symptoms with friends or family members.

“Some people feel like the disease changes them,” Branson says. “And they want to continue with their persona and who they were before receiving that diagnosis.”

Addressing those issues is one aspect of the work Branson is conducting as part of the PD GENEration: Mapping the Future of Parkinson’s Disease initiative – a collaborative from the Parkinson's Foundation and partners including the pharmaceutical and health care company Sanofi that was launched in 2020 and offers free genetic testing and genetic counseling to people with Parkinson’s.

Goals of the study include identifying potential participants in clinical trials for treatments and bolstering research into the disease. MSM began recruiting participants for the PD GENEration project in July 2021, and has focused on enrolling more Black individuals to improve their disease management and connections to clinical trials.

Similarly, The Michael J. Fox Foundation has been involved in the Black and African American Connections to Parkinson’s Disease study, which seeks to learn more about Parkinson’s-related gene changes among people who are Black or African American.

“Including the Black community in PD research is critical,” Branson says. “It will help advance scientists’ understanding of how the disease specifically affects this population and which treatments are most effective.”

Connecting more with the community also has been a key part of Penn Medicine’s efforts to reduce health care inequities among Black patients with Parkinson’s. Dahodwala says the health system is one of several area providers participating in the Delaware Valley Endeavor for Racial SolidarITY in PD, or DIVERSITY PD, project.

Led by Philadelphia-based advocacy organization The Parkinson Council, the initiative works to partner with community groups to hold educational programs that raise awareness about neurological conditions and seeks to help community members who exhibit possible signs of Parkinson’s get access to an appointment.

“If people are being identified who may have Parkinson’s disease but can’t get care, we’ve been kind of providing an avenue for community members to get care at specialty centers,” Dahodwala says.

Wendy Lewis, CEO of The Parkinson Council, says the program over the past several years has helped create an infrastructure of trusted physicians, nurses, rehabilitation specialists, social workers, and community health workers to expand access to care for community members with neurodegenerative conditions.

Lewis says the program was launched in the wake of the 2020 protests over the murder of George Floyd by a Minneapolis police officer, as previous investments aimed at addressing health inequities were examined and found to be ineffective.

She says a relatively small share of Philadelphia residents who are Black receive neurological care at academic medical centers in the area, despite Black individuals making up a large portion of the population.

Lewis says it is imperative for health care providers to make a concerted effort to find those who have been underserved in terms of neurology care instead of relying on them to visit their facilities.

Yet ultimately, she says, patients and their family members must advocate for themselves by asking questions about their care to ensure their concerns are being addressed.

“A lot of people of color now are feeling very empowered to ask those questions about their care where they used to just defer to their doctors, because it was assumed they were the doctors and they know better,” Lewis says. “If you come in armed with information, doctors have to take your needs more seriously – it’s about making people accountable.”

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