When his mother, who had Alzheimer's disease, lost consciousness one day, Charles Flippen, MD, FAAN, and his sister took her to the emergency department for evaluation. “First, the nurse came into the examination room and did my mother's intake and took her medical history. Then a few minutes later a physician came in,” recalls Dr. Flippen, who is Black and an endowed chair in neurology at the David Geffen School of Medicine at UCLA. “He didn't give us his name. He just said, ‘I'm the doctor,’ and stated that my mother had likely had a stroke. He had not spoken to her or examined her, and she had not had any diagnostic testing. He just proceeded to tell us what was going to happen.”

Dr. Flippen's sister, who is also a doctor, said, “How could you know if you haven't examined her and she hasn't had any testing? By the way, my brother here is a neurologist.” The doctor looked embarrassed and said he'd be right back.

“That was the last we saw of him,” Dr. Flippen says. “About 10 minutes later, another doctor came in and began by asking us, ‘What happened with your mom?’” The episode turned out to be a seizure; if Dr. Flippen and his sister had not had medical knowledge, or had felt uncomfortable speaking up, their mother might have received inappropriate and possibly dangerous treatment.

This is just one of several experiences the Flippen family has had that illustrate disparities in neurologic care because of race. “You could assume that one situation was just bad care in general, but when things like this happen over and over again, you start to see a pattern,” says Dr. Flippen.

Take the time his mother-in-law experienced a stroke, and the doctor who treated her assumed it was due to bleeding in the brain, a hemorrhagic type of stroke that's more common in Black people. It's treated very differently from the way an ischemic stroke, caused by a blood clot, would be treated. “Because they assumed it was a hemorrhage before getting a scan, they were about to drop her blood pressure precipitously, which is the opposite of what you would do for an ischemic stroke,” Dr. Flippen says. “I told the nurse, ‘We don't have this information yet; you can't do that now.’ I was able to do that because I had the medical knowledge, but most people aren't in that position.”

Persistent Pattern

Twenty years ago, the Institute of Medicine (now known as the National Academy of Medicine) issued “Unequal Treatment,” a report documenting how racial and ethnic minorities experience a lower quality of health care than White Americans and are less likely to receive even routine medical procedures. Since then, studies have uncovered the same pattern repeatedly, including within the field of neurology. Compared with White people, people of color are diagnosed later, are more often misdiagnosed, have less access to specialists, and are less likely to receive the highest standard of care.

These disparities are manifested across a wide range of neurologic conditions. For example, a 2021 study by researchers at the University of California, San Francisco, found that Black, Hispanic, and Asian patients in California were significantly less likely than White people to receive an early diagnosis of dementia. Black patients and other people of color, as well as those of lower socioeconomic status, are much less likely to have access to surgery for epilepsy, according to a 2017 study in the Journal of Neurology. They also tend to be referred at a later stage of their disease for deep brain stimulation to treat parkinsonism, according to a 2020 study in Neurology. A 2021 study in Neurology found that these patients are less likely to receive state-of-the-art endovascular therapy for stroke. A report in a 2017 issue of Neurology said that Black and Hispanic patients are less likely to be seen by outpatient neurologists trained in the specialty than White patients.

Beverly Foster, who is Black and a member of the African American Advisory Board for the Charles F. and Joanne Knight Alzheimer's Disease Research Center (ADRC) at Washington University in St. Louis, says her own mother received excellent care for Alzheimer's disease in Kansas City in the late 1990s and early 2000s. After her mother died, Foster became an advocate for people with Alzheimer's disease and their families; serving on the advisory board, she has repeatedly heard stories of patients not getting the care they needed. “Many people end up sitting in emergency rooms for hours, or are sent home without being seen.”

And when Foster's eldest brother, Curtis, began showing signs of dementia in the mid-2010s, she and her siblings tried in vain to enroll him in clinical studies. “Two of my uncles developed Alzheimer's disease, so we really wanted to get my brother into a study since we have this family history,” Foster says. “My sisters and I would call and try to sign him up and never get a call back. There was one study where they finally got through the first step, but then no one ever followed up. They didn't seem to want to deal with us and get him signed up.”

It's all too familiar, says Charlene Gamaldo, MD, FAAN, professor of neurology at the Johns Hopkins University School of Medicine in Baltimore. “People of color tell me they weren't believed when they said they had pain or discomfort and were questioned about why they needed a pain medication,” she says. “Patients for whom English is not the first language say they felt they were rushed through their appointments and talked down to.”

The COVID-19 pandemic has only magnified disparities. A review published by Harvard neurologists in the January 2021 issue of Nature Reviews Neurology found that Black patients with acute stroke were less likely than White patients to receive stroke teleservices during the pandemic and that gaps in access to acute stroke care were also observed among Latino patients. They reported that low-income patients with Parkinson's disease had worse access to care than those with higher incomes, and this gap was greater for patients from racial and ethnic minority groups.

Recognizing Bias

Inequities in treatment result in part from the unconscious, or implicit, biases of health care providers—as with Dr. Gamaldo's patients who told her they were treated as though they were seeking opioids when they reported pain and asked for pain relief. Implicit bias could lead to medical professionals assuming that patients from a lower socioeconomic background will be less likely to follow up on their treatment plans and take their medications or rushing to a diagnosis the way the doctor treating Dr. Flippen's mother did. In one example of how unconscious bias can affect health care, a study published in Neurology in 2013 found that young Black patients with stroke and transient ischemic attack were more likely to have their urine tested for drugs than other stroke patients.

But disparities also are the result of broader social and economic inequities in society—such as lack of access to health care, education, and quality food; economic instability; and limited social and community support—that disproportionately affect people of color.

It's hard to know where to begin addressing these inequities, says Olajide Williams, MD, chair of neurology at Columbia University's Irving Medical Center in New York City. “I've had patients who ration their pills because they can't afford co-pays or don't call 911 because they're scared of the ambulance bill.” Some of Dr. Williams' patients cannot afford both their medication and groceries for their families. “If you're battling poverty and hunger,” he says, “health is no longer a priority—until the disease is raging or death is knocking at your door.” By then, it's a catastrophic situation that requires emergency care. “Those folks end up in the hospital, typically with no insurance or emergency Medicaid, and their condition spirals out of control. And structural racism exacerbates all these problems.”

Structural racism refers to centuries of economic, governmental, and social policies that have produced systemic inequities in housing, education, health care, and other areas. For instance, redlining—in which federal home loan programs refused to insure mortgages in areas with predominantly Black populations—made mortgages less accessible to Black homeowners, while the midcentury interstate highway boom often carved up thriving Black communities. As a result, many of America's towns and neighborhoods are still segregated today, with many Black and Latino families living in neighborhoods with poorer housing, struggling schools, unhealthier air, and limited resources.

And in many of these areas, neurologists are scarce. “At community hospitals, the reality is that even if you have access to a neurologist, it's hard to get the tests that help you determine what you have, like sleep tests, neuropsychological tests, and electromyograms to test for muscle function,” says Nicte Mejia, MD, MPH, assistant professor of neurology at Harvard Medical School and director of Neurology Community Health, Diversity, and Inclusion at Massachusetts General Hospital. “We need neurologists and neurologic services in these communities.”

Instituting Change

Individual neurologists and neurology programs, and even the field of neurology as a whole, can't bring overnight change to the entire health care system, but they are taking steps to try to address disparities, including training to educate neurologists on interacting effectively with people from different cultures and backgrounds, programs to encourage the hiring of more neurologists of color, and efforts to increase access to neurologic care in marginalized communities.

The American Academy of Neurology's Inclusion, Diversity, Equity, Anti-Racism, and Social Justice (IDEAS) Subcommittee, along with several other diversity leadership groups, is developing tools and resources to promote greater gender, racial, and ethnic diversity in neurology departments, expand leadership in neurology among members of underrepresented groups, and help advance the careers of minority medical students. The AAN recently received a grant from the Health Equity Innovation Fund to develop a multifaceted anti-racism core curriculum and training specifically for neurologists.

The AAN also has established an Underrepresented in Neurology initiative to recruit more people of color. “Only about 1 to 2 percent of practicing neurologists are Black, and we want to increase those numbers,” says Jimmy Berthaud, MD, MPH, assistant professor of neurology at the University of Michigan Medical School in Ann Arbor.

In November 2020, Dr. Mejia conducted a webinar for AAN members on factors that foster structural racism in neurology care and interventions to promote health justice. And at the AAN's virtual Annual Meeting in April 2021 (and in an ongoing series of webinars), neurologists have been educated on health care disparities and how they can address them. The 2021 virtual meeting included more than 25 programs related to this topic, including implementing equity, diversity, and inclusion in medical schools; addressing biases that patients may have against neurologists from diverse backgrounds; and promoting diversity in small and solo practices.

Individual hospitals and health systems also are creating programs aimed at rooting out inequities in both neurology and health care in general. At Massachusetts General Hospital, neurologist Altaf Saadi, MD, MSc, has been expanding neurologic care at community health centers in underserved neighborhoods. “For many of these patients, it can be very challenging to get to our main hospital for routine outpatient care,” says her colleague Dr. Mejia. “A key strategy will be to have neurologists embedded in community health centers and small community hospitals, which may not have on-site neurologists. The expansion of telehealth is also a way to improve access to neurologic care in underserved communities.”

Improving access may affect some hospitals and health systems financially. People on Medicaid don't always receive the highest tier of care because reimbursement to hospitals and physician practices is lower, and many institutions are unwilling or unprepared to accept more than a certain number of Medicaid patients. “That's something we have to address,” says Dr. Flippen. “At my institution, and in our department, we are looking to improve equity in the payer mix. Your institution's values should be reflected in your balance sheet. Maybe our profit margin won't be as high, but we will be meeting our moral obligation.”

Bringing real and lasting change to the system is much more complex, says Dr. Williams. “We have to address those social determinants of health that put people in these situations, unfairly in many cases, through marginalization. The problems are seismic and require seismic solutions.”

It's a question of resources, says Mitchell Elkind, MD, FAAN, professor of neurology at Columbia University's Irving Medical Center and immediate past president of the American Heart Association. “We have to do a better job of getting health care to all people by increasing access to health insurance. For example, 17 states in the United States chose not to expand Medicaid coverage, and the disparities that exist in health care follow disparities in coverage and the resources put toward it.”

A 2020 report from the Commonwealth Fund found that the expansion of health care coverage created by the Affordable Care Act of 2010 (ACA) led to historic reductions in racial disparities. Black adults living in states that expanded Medicaid reported coverage rates and access to care as good as or better than those reported by White adults in states that did not expand Medicaid. Hispanics in both expansion and nonexpansion states reported modestly higher rates for having a usual source of health care. But improvements have stalled in the past few years and have even been eroded somewhat, which the report attributes to efforts to weaken the ACA.

“We need to continue advocating for a governmental response that provides health insurance and access to everyone, reduces poverty, allows people to live in safe neighborhoods, and provides access to quality education,” says Dr. Elkind.

Change can happen at the local level, says Dr. Williams. “We need to champion elected officials who promote these policies. We need to fight for universal coverage and good quality health insurance that covers everyone for the conditions they have. There's no one silver bullet; we need millions of silver bullets, and we all have to work for them.”

Beverly Foster and her siblings never found a clinical trial for their brother before he died in 2018. But Foster says she works on the Knight ADRC's African American Advisory Board in memory of him and her other family members who have had Alzheimer's disease. “I continue to advocate for my family and for others, and especially people of color and Black people in particular,” she says. “We have the highest rates in so many comorbidities and risk factors, and I want us to be leaders in caring for ourselves.”

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How to Advocate for the Best Health Care
Despite structural inequities that can affect health care, people can take steps now to ensure they and their loved ones are getting the best care.