[MOUNT LAUREL, NJ, November 8, 2022] — The closing plenary session at the American Neurological Association 2022 Annual Meeting spotlighted multiple neurologic health inequities and their effects—from the previously unrecognized effects of multiple sclerosis among Black and Latino populations to disproportionate impacts of Alzheimer’s to inadequacies in neurologic health care for LGBTQ people. Speakers at the October 25 session, titled “Advancing Neurologic Equity: Challenges and Paths Forward,” also presented a new research study finding that neighborhood disadvantage strongly predicted likelihood of death from neurologic conditions like coma and stroke, even independent of individual wealth and demographics.
“Our most common burdensome disorders of the brain disproportionately affect persons who are marginalized on the basis of race, ethnicity, sexual orientation, gender identity, physical and mental disability, and [other] social and structural disadvantages,” said session co-chair Roy H. Hamilton, MD, MS, FANA, Associate Professor of Neurology at the University of Pennsylvania.
Plenary Highlights:
- Racial/ethnic disparities in neurologic diseases such as Alzheimer’s may be an increasing health care issue due to coming demographic shifts. Research and clinical practice must be prepared to confront these disparities.
- New research finds that neighborhood deprivation strongly predicts 30-day mortality for common neurologic events like coma and stroke, independent of individual poverty or demographics. It also predicts brain health issues among those not diagnosed with disease. New CMS hospital payment models incorporate Area Deprivation Index for resource allocation to directly address health inequities.
- Research based on white populations may have obscured the prevalence of multiple sclerosis among Black populations, and its severity among Black and Latinx populations.
- Research that only looks at large-scale ethnic groups misses important differences within those groups, including culture and experiences of discrimination.
- Clinical neurologists are often unaware of how to be inclusive of LGBTQ individuals, and unique risk factors they may face. Clinical research has failed to collect sufficient information to study brain health in LGBTQ populations.
In a diversifying nation, health disparities loom large
Monica Rivera Mindt, PhD, ABPP, Professor of Psychology and Latinx Studies at Fordham University and Professor of Neurology at Icahn School of Medicine at Mount Sinai, discussed how demographic trends are set to collide with health disparities to create health crises in neurologic disease. “This is an emerging, rapidly escalating public health issue that we’re talking about here,” she said. The U.S. expects to see major population increases among minoritized racial and ethnic groups, who often face health and socioeconomic disparities that lead to worse outcomes or higher risk for neurological disease. Black and Latinx adults 65 and older have up to three times higher risk of Alzheimer’s and related dementias compared with their non-Latinx white counterparts. Latinx and Black Americans also tend to be younger and have greater disease severity when diagnosed, and by 2030 will make up approximately 40% of the over 8 million Americans affected by Alzheimer’s and related dementias, reported Rivera Mindt.
Deprivation predicts neurologic health and mortality
Disparities among racial and ethnic groups are driven by socioeconomic factors and structural inequities. Jay Lusk, BSc, an MD/MBA student at Duke University, presented a new study showing that residence in a highly disadvantaged neighborhood predicted mortality for patients with MS, stroke, degenerative nervous system disorders, and other common neurological conditions. “Place matters in terms of healthcare outcomes,” he said. “There’s a very substantial association between … the extent to which a patient experiences neighborhood socioeconomic disadvantage and their likelihood of mortality within 30 days after hospital admission.” He noted massive differences in outcomes for certain disorders—for example, patients with non-traumatic coma from the most disadvantaged neighborhoods were 146% more likely to die than patients from the most well-resourced neighborhoods. This was true even after controlling for individual poverty, age, legal sex, and race/ethnicity.
“We know that social determinants impact brain health profoundly [and] brain health is not distributed equally,” said Amy Kind, MD, PhD, Associate Dean for Social Health Sciences and Programs at the University of Wisconsin School of Medicine and Public Health. Kind and her colleagues created the Area Deprivation Index (ADI), which measures social determinants of health at precise geographic resolution, with data made publicly available through the Neighborhood Atlas online and used in studies by Lusk and others.
ADI studies by Kind and colleagues among cognitively “healthy” individuals found that individuals living in highly disadvantaged neighborhoods had less tissue in certain areas of the brain, more rapid brain degeneration, and more cognitive decline. Other studies have found that children living in highly disadvantaged contexts showed marked differences in brain development.
In Lusk’s study, ADI did not appear to impact readmission rates for all neurologic conditions, suggesting that health care interventions in that area may be equitable with regard to neighborhood socioeconomic status. When it comes to mortality, however, the long-term cumulative effects of deprivation may be too great. The negative effects of neighborhood disadvantage even rivaled the positive effect of treatments such as mechanical thrombectomy for stroke. “That is a tremendous call to action,” said Lusk. “We’ve devoted millions of dollars to this transformative technology. Yet there are underlying factors that have effects beyond our ability as individual clinicians or even individual health systems to control.” This is especially significant given that health care payment schemes may penalize critical health care facilities in disadvantaged areas for high mortality rates. Kind and Lusk noted that the Centers for Medicare and Medicaid Services will soon use ADI metrics as part of their payment scheme for accountable care organizations, seeking to correct this imbalance.
A critical goal for neurology: understanding LGBTQ issues
Research by Nicole Rosendale, MD, Assistant Professor of Neurology at University of California San Francisco noted that a significant proportion of neurologists are unprepared to deal with LGBTQ patients, especially transgender patients, who often report discrimination in health care. Neurologists are aware that disparities exist, but Rosendale found that “Only about 35% would tailor their neurologic care based on someone’s sexual orientation and/or gender identity,” and only half knew about increased prevalence of stroke risk factors within the LGBTQ community. Another study showed that 78% of doctors were afraid to collect sexual orientation and gender identity information, although most patients were happy to provide it. “If we just ask it of everyone and make it systematic and routine, that reduces the stigma,” said Rosendale. She presented the example of a trans man whose breast cancer was not diagnosed until it had spread to his brain. “Knowing who the person is in front of us, what their identity is, their medical history, is really, really essential.”
A distorted research picture
Research—and the clinical tools derived from it—disproportionately represent white populations. “Multiple sclerosis has been considered a ‘white’ disease for many, many years, which has led to unintended consequences of other populations being ignored scientifically,” noted Lilyana Amezcua, MD, Associate Professor of Neurology at the University of Southern California. Yet emerging research suggests that Black people may be at higher risk than previously thought. Black and African American individuals with MS also tend to have worse social determinants of health and clinical outcomes, and Black and Latinx individuals who develop MS are more likely to do so (and die from it) at an earlier age.
Without a culturally informed, evidence-based approach to providing assessment and care for minoritized individuals, diagnostic tools based on this research, including cognitive tests, are more likely to mis-classify or mis-diagnose them, reported Rivera Mindt. And therapeutics may also work differently. For example, the APOE4 gene, an important risk factor for Alzheimer’s, does not appear to be as strong a predictor of Alzheimer’s risk for Black and Latinx populations—and therefore, potential therapies targeting that gene may be less likely to benefit them.
In addition, said Rivera Mindt, “We really need to be paying attention to within-group variance” rather than treating ethnocultural groups as monoliths. A nationwide study of people with HIV that she and colleagues conducted found that Latinx individuals of Caribbean/Puerto Rican nativity were at significantly greater risk for cognitive impairment compared to individuals of Mexican/Mexican American nativity and non-Latinx whites.
A literature review by Rosendale also highlighted an alarming lack of population-level research into neurologic health issues among LGBTQ people. She pointed out that sexual orientation and gender identity data are often not collected in research studies—and if they are, the categories are often limited or confusing. “Often studies are forced to collapse large swaths of the community into a big bucket of ‘sexual minorities’ or ‘LGBTQ people,’ even though there are unique risk factors.”
The way forward
“We need to develop measures of discrimination and engage communities and health care leaders in designing system level health care interventions with culturally appropriate programs,” said Amezcua. “We also need to support health care systems to provide clinicians relevant training, and that needs to start early. That includes learning about our own implicit biases and learning cross-cultural communication.”
“These are very challenging problems that are baked into the structure of our society,” said Lusk. “I don’t think that’s going to be fixed by an individual health system or an individual provider, but we have an opportunity to come together to build interventions that can make an impact. We have to understand the mechanisms, whether they be biological, social, or structural, and develop our interventions in a way that are actively designed to promote health equity for all.”
About the American Neurological Association (ANA)
From advances in stroke and dementia to movement disorders and epilepsy, the American Neurological Association has been the vanguard of research since 1875 as the premier professional society of academic neurologists and neuroscientists devoted to understanding and treating diseases of the nervous system. Its monthly Annals of Neurology is among the world’s most prestigious medical journals, and the ANA’s Annals of Clinical and Translational Neurology is an online-only, open access journal providing rapid dissemination of high-quality, peer-reviewed research related to all areas of neurology. The acclaimed ANA Annual Meeting draws faculty and trainees from the top academic departments across the U.S. and abroad for groundbreaking research, networking, and career development. For more information, visit www.myana.org or @TheNewANA1.
