“The heartbreaking realities of health disparities were widely discussed at ACR,” says patient advocate Dawn Gibson. “It feels like we’re reaching consensus that diagnosis, treatment, and outcomes can vary widely by income and race. We might be getting to the end of the beginning of the health disparities conversation.”
Thankfully, identifying and addressing racial and socioeconomic health disparities are becoming a core part of the ACR meeting agenda. More than 30 research abstracts on these topics were presented (you can see a full list here and here). Two of the most popular and widely attended sessions during the meeting included one on implicit bias, with a presentation from Jillian Rose, PhD, Director of Community Engagement, Diversity, and Research at Hospital for Special Surgery, and one on microaggressions and gaslighting, with a presentation from Ashira Blazer, MD, Assistant Professor in the New York University School of Medicine Division of Rheumatology.
Below, you’ll find some notable research findings about health disparities, but as you read them, it’s important to put them in the right context. Ask the question: “How is racism operating to produce this disparity?” noted Dr. Blazer during her presentation. “When we measure racial differences in medicine, we are largely measuring the effects of racism. Whenever we see differences across race, the first thing we say can’t be, let’s find a gene for this, or let’s find a molecular signal for this, or what’s the difference in biology across the races?”
Dr. Blazer called for a multi-layered approach to tackling racial disparities in health care. “We have to understand the scope of the problem, we have to study it, we have to say ‘racism,’” she said, pointing out some important and tangible areas of focus:
- Journals have to prioritize this and invite good-quality data
- Physicians need to listen and understand the unique challenges patients face
- Doctors and trainees should be educated with comprehensive cultural competence and avoidance of bias
- Patients need to have agency as advocates, educators, and researchers
- Diversify and focus on recruitment, equity, and inclusion for rheumatologists and other related health professionals
A common theme that emerged was the importance of listening to patients and making them feel seen and heard, which Dr. Rose accomplished during the session on implicit bias when she addressed how explicit and implicit bias impacts different identity groups, such as race, ethnicity, weight, gender, and financial status.
“As a trans person I nodded along as she shared that many trans people don’t see a doctor when needed for fear of being mistreated — harassed, assaulted, or denied care — and often must educate their providers about trans literacy,” says patient advocate Charis Hill.
Dawn Gibson said that the research focus on disparities at ACR was validating in some ways, but challenging in many others.
“Disparities aren’t all in your head and it’s NOT personal. If you aren’t getting proper care it’s time to seek out additional guidance and resources from trusted peers and organizations. Some people will have to work harder than others to receive adequate care,” she says, while acknowledging that “disparities conversations can be demoralizing, especially when it feels like lots of people with great jobs and excellent health care musing about what other patients deserve to get, and how quickly.”
“This won’t stop me from working on it, but we have to recognize that this conversation is also deeply traumatizing,” says Gibson. “It’s important to honor that with self-care — and then get back to work.”
Here’s a look at some of the work done at ACR this year to help shed light on the disparities interfering with top-quality care for patients with rheumatic disease. For more research breakthroughs from ACR 2021, check out our main guide: 100+ Arthritis & Rheumatic Disease Updates You Need to Know.
1. Doctors are addressing differences in skin manifestations of disease in people of color
Lupus. Scleroderma. Psoriatic disease. So many rheumatic diseases have dermatologic involvement, but lack of knowledge about how diseases may present differently on different skin tones can lead to staggering delays in diagnosis, misdiagnosis, and poor treatment. A popular ACR session, presented by Brigham and Women’s dermatologist Ruth Ann Vleugels, MD, addressed specific examples of how the same disorder can present differently in skin of color, but that’s just the beginning of addressing disparities.
“It’s not just about recognizing patterns, it’s about improving diagnostic skills and patient outcomes,” according to Lisa Zickuhr, MD, Assistant Professor of Medicine within the Division of Rheumatology at Washington University School of Medicine, who moderated the session in ACR Convergence Today.
“Patients of color disproportionately suffer from the skin manifestations of lupus and many other rheumatic diseases. Many factors contribute to this disparity, some of which are beyond the rheumatologist’s ability to change. But it is possible to improve clinicians’ skills and comforts in assessing rashes and other skin changes in patients of color.
“This session was a down payment on raising awareness of the institutional barriers patients with darker skin face in establishing a dermo diagnosis and obtaining proper treatment,” says Gibson, who has been advocating and raising awareness for years on this very topic. “We don’t see enough darker skin featured, and that’s a big deal in the U.S. and for global health. Darker-skinned patients might want to consider asking their providers to get them featured in medical training materials. They don’t owe this, and it’s wrong to make any patient feel obligated to do so. But this is something that will leave a lasting impact on medicine and a legacy for everybody with darker skin tones.”
2. Rheumatoid arthritis disease activity and function varies widely across racial and ethnic groups
A large study presented at ACR quantifies what many providers and patients have already long suspected: that Black and Hispanic RA patients often have higher disease activity and worse functional status than white patients. Using data from the CorEvitas registry, which has more than 56,000 RA patients living in 42 U.S. states, researchers looked at a group of people who had at least two provider visits over the last several years. Of the 9,363 participants in the study, most were female, white, and in their late 50s: 8,142 were white, 527 were Black, 545 were Hispanic, and 149 were Asian.
The researchers found various disparities among the groups. Among them: Black and Hispanic patients had worse functional status scores than white patients throughout the study. While disease activity generally improved for patients over time, Hispanic patients improved less than white patients.
“Our study was designed to evaluate clinical outcomes, and unfortunately does not address issues related to access to care,” study coauthor Jacqueline O’Brien, PhD, a clinical epidemiologist at CorEvitas, said in a press release. “We saw that all patients demonstrated improvement over time, but even after adjustment for potential confounding variables, such as the study site, prior and current biologic use, insurance status, education, there were still differences between the racial and ethnic groups at the second time point.
Many factors contribute to health inequity, including access to care, socioeconomic status, systemic racism, and other social determinants of health. Certainly, more research is needed to understand how these factors interact and result in different clinical outcomes for racial and ethnic groups.”
3. Insurance (and how it affects access to care) is associated with rheumatoid arthritis disease burden
Noting that successful RA therapy is dependent on access to specialty care, insurance coverage, and effective management of associated comorbidities, researchers sought to study how access to care and disease burden varies among RA patients across different U.S. regions. They used data from a national registry that is maintained by the American College of Rheumatology, called RISE, looking at 182,722 RA patients from 182 different locations across the U.S.
The main takeaway: Disease activity was higher in Black patients, those in the South, and those with Medicaid/Medicare coverage. Having Medicaid insurance was associated with less access to care: Fewer than 20 percent of rheumatology practices were caring for more than 50 percent of RA Medicaid patients.
“Medicaid is an essential lifeline for disabled, family caregivers, and other low-income patients, but many rheumatology practices don’t take Medicaid patients,” says patient advocate Dawn Gibson, who lives with ankylosing spondylitis and anemia. “Now is the time for bold, innovative approaches to increase patients’ access to specialty care.”
Gibson notes that it’s easy for patients to get worn out while seeking specialists, but you have to keep going, despite it being hard. “I’ll ask my [hematology] office for more help accessing care. It’s a combined hemo-onco practice, with a large staff. They have the resources to run down Medicaid-friendly providers.”
4. Telemedicine use during the COVID-19 pandemic is affected by patients’ race, English language proficiency, and more
Virtual and digital care — including access to telemedicine and usage of electronic patient portals — have been a lifeline to many rheumatic disease patients throughout the COVID-19 pandemic. But researchers from the University of Washington and George Washington University revealed important insights about disparities in the utilization of this technology.
Examining data on 1,442 patients who had 3,406 visits — a mix of in-person, telemedicine, and telephone — between April 2020 and March 2021, they found that white patients were more than two times as likely as Black or American Indian/Alaska Native patients to use telemedicine. Those who preferred to speak English were more than three times as likely to use telemedicine as those who preferred Spanish or other languages. White and English-speaking patients were also significantly more likely to use electronic patient portals than other groups.
Study coauthor Jenna L. Thomason, MD, MPH, a rheumatologist at University of Washington Medicine, noted in a press release that more research on disparities in telehealth is needed, given the likelihood that telehealth will become an increasingly important way of delivering care in the future, particularly research that can identify what’s causing these differences in telehealth usage.
“This type of research is critical for shaping interventions aimed at correcting inequalities,” Dr. Thomason said. “If perceptions about utility and privacy are barriers to telehealth use among certain racial and ethnic groups, then targeted educational outreach could be helpful.”
5. Systemic sclerosis symptom severity and disease prognosis is worse in Black patients
Systemic sclerosis is a rare autoimmune disease that affects the skin as well as internal organs. It disproportionately affects women and health disparities have been noted in Black systemic sclerosis patients, with worse disease outcomes relative to other racial/ethnic groups.
Researchers from the Medical University of South Carolina looked at a group of 372 systemic sclerosis patients from their medical center; about 40 percent were Black and 80 percent were female. They found that Black patients developed the condition at a significantly younger age than those in other racial or ethnic groups, and females tended to develop the disease at a younger age than males.
When they compared disease outcomes for diffuse cutaneous systemic sclerosis, renal crisis, interstitial lung disease, and restrictive lung disease, all serious manifestations, they found that Black patients had a statistically significant increased risk for all but renal crisis compared to non-Black patients.
The researchers also looked at social determinants of health that might impact these outcomes and found two significant ones: private health insurance and being a high school graduate, both of which were less common among Black patients than others.
“Even when controlling for disease duration, outcomes like mortality, pulmonary hypertension, interstitial lung disease, and diffuse disease continued to be significant. This means that being Black was associated with worsened outcomes no matter how long the patient had systemic sclerosis. This may affect how clinicians care for their Black patients with systemic sclerosis, as well as possibly encouraging them to involve other specialists earlier,” study co-author Sarah M. Compton, MD, a rheumatologist at Medical University of South Carolina, said in a press release.
As a next step, the research team plans to interview people to learn more about the social determinants affecting their health, which they hope can help inform interventions to improve care.
6. Hispanic patients with systemic sclerosis have more severe disease
A separate study on systemic sclerosis, from University of Texas researchers, shed light on unique disease burdens in Hispanic patients. Researchers looked at a group of 427 people with systemic sclerosis that included white, Hispanic, and Black patients.
They found that the disease manifestations and prognosis were different in Hispanic patients compared with other groups: They were more likely to be positive for RNP, an autoantibody involved in systemic sclerosis; have lupus-like symptoms, and have lower lung volume — a sign of worse disease.
Hispanic patients less often had widespread skin involvement and had milder skin involvement than Black patients. They had higher mortality than white patients but not Black patients. Differences in mortality between Hispanic and white patients persisted even after researchers adjusted for income and education level.
7. Poor outcomes with lupus nephritis are affected by your race and where you live
Lupus nephritis, or lupus that affects kidney function, is a more serious form of the disease. While deaths from lupus nephritis have thankfully dramatically decreased overall over the last 20 years, a study from researchers at University of California Los Angeles shows that these improvements have not been shared equally among different racial and ethnic groups.
They found that deaths from lupus nephritis decreased by 26 percent over the last 20 years, but LN deaths among Black patients were six times greater than that of white patients and more than two times greater than that of other race/ethnic groups. Black patients accounted for 38 percent of the lupus nephritis deaths, despite representing only 12.8 percent of the U.S. population.Hispanics, American Indians, Alaskans, and Asia Pacific Islanders were also found to have higher death rates than white patients.
Perhaps surprisingly, the highest mortality for lupus nephritis occurred in large metropolitan areas relative to other environments, which suggests more research is needed on how neighborhood environmental factors affect health outcomes.
“These findings need an explanation,” wrote Janet Pope, MD, in an article on RheumNow. “A deep look at unconscious biases of health care workers and health system failures is also warranted, as very few polygenic changes will account for 6 times higher discrepancies in mortality.”
Researchers also noted that “studies are urgently needed to understand reasons underlying these disparities and the recent worsening trend.”
8. There are significant racial gaps in kidney complications for children with lupus
Though it is known that Black patients are disproportionately affected by childhood lupus, researchers wanted to better understand whether gaps in outcomes may be changing as pediatric lupus care has advanced in recent years. Using a large health database, researchers identified 7,434 people with lupus under age 21 who were admitted to the hospital at least once since 2006.
Over a 13-year period, the proportion of anyone being hospitalized for serious kidney-related complications (including dialysis or a diagnosis of end-stage renal disease) decreased. But Black children remained significantly more likely to have an adverse renal outcome compared to white children. Black and Asian children were also more likely than white children to be hospitalized for their first occurrence of an adverse renal outcome.
The researchers also looked at the population makeup of the hospitals where children were treated and found disparities in outcomes between hospitals where the majority of the pediatric lupus patients were Black or Hispanic and those where the majority were white.
“This focus on improving care quality to reduce treatment variation alone is likely not going to be sufficient to close the gap in racial disparities,” study coauthor Joyce Chang, MD, Assistant Professor of Pediatrics at Children’s Hospital of Philadelphia told Healio Rheumatology. “We actually need to understand the root causes of racial inequities in order to identify processes that would preferentially target improved outcomes among highest risk groups. The population-based estimates can only provide so much information, especially with the type of health system data we have to date.”
9. We can’t ignore the effects of unemployment and poverty on people living with rheumatic disease
“Are you poor because you’re sick or sick because you’re poor?” Edward Yelin, PhD, professor in the Institute for Health Policy Studies at the University of California, San Francisco Medical School, asked this thought-provoking question during a keynote address about the intersection of unemployment, poverty, and chronic disease outcomes in diseases like rheumatoid arthritis and lupus.
He went on to summarize an extensive body of his research that has revealed two key points, as Healio Rheumatology reported: “One is that reduced health status is still one of the most common routes to poverty; the other is that musculoskeletal conditions are the most common cause of work loss.”
Dr. Yelin raised some really interesting points about the importance of being able to work — not just for financial reasons, but for deeper ones related to quality of life, identity, and feeling well. “Outcomes of RA and lupus are contingent upon interaction with a job, and not necessarily contingent upon severity of disease,” he said.
However, some 35 to 40 percent of people with RA and lupus have left the workforce after a decade of living with their disease. For patients with lupus, who are typically diagnosed at young ages, this means they are leaving the workplace at the prime of their career, which can have a profound impact on the rest of their lives. Dr. Yelin went on to connect lack of employment with poverty, which is associated with poor outcomes in rheumatic disease.
Dr. Yelin’s presentation speaks to the incredibly challenging chicken-egg aspect of managing rheumatic disease, employment, and poverty. Being poor and sick makes it hard to access care and get better control of your disease, which in turn makes it that much harder to keep working, thus creating a vicious cycle for vulnerable and underserved patients.
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Black People with Systemic Sclerosis May Have More Severe Disease, Worse Prognosis. American College of Rheumatology Press Release. November 1, 2021.
Chang J, et al. Racial Disparities in Renal Outcomes over Time Among Hospitalized Children with SLE and Effects of Hospital Minority Composition [abstract]. Arthritis & Rheumatology. November 2021. https://acrabstracts.org/abstract/racial-disparities-in-renal-outcomes-over-time-among-hospitalized-children-with-sle-and-effects-of-hospital-minority-composition.
Compton S, et al. Disease Characteristics and Social Determinants in African Americans with Systemic Sclerosis: A Single Center Experience [abstract]. Arthritis & Rheumatology. November 2021. https://acrabstracts.org/abstract/disease-characteristics-and-social-determinants-in-african-americans-with-systemic-sclerosis-a-single-center-experience.
Dowell S, et al. The Distribution of Social Deprivation, Distance to Care and Disease Burden in Rheumatoid Arthritis Patients in the United States [abstract]. Arthritis & Rheumatology. November 2021. https://acrabstracts.org/abstract/the-distribution-of-social-deprivation-distance-to-care-and-disease-burden-in-rheumatoid-arthritis-patients-in-the-united-states/.
Implicit Bias: All of Us. ACR Convergence 2021. November 7, 2021. Microaggressions & Gaslighting: Navigating Negative Behaviors in the Healthcare Setting. ACR Convergence 2021. November 9, 2021.
Jandali B, et al. Hispanic Patients with Systemic Sclerosis Have More Severe Disease and Higher Mortality: A Longitudinal Cohort Study [abstract]. Arthritis & Rheumatology. November 2021. https://acrabstracts.org/abstract/hispanic-patients-with-systemic-sclerosis-have-more-severe-disease-and-higher-mortality-a-longitudinal-cohort-study.
Laday J. Racial disparities persist in renal outcomes among children with lupus. Healio Rheumatology. November 8, 2021. https://www.healio.com/news/rheumatology/20211107/racial-disparities-persist-in-renal-outcomes-among-children-with-lupus.
Learn to recognize dermatologic changes in patients of color with rheumatic disease. ACR Convergence Today. November 5, 2021. https://www.acrconvergencetoday.org/learn-to-recognize-dermatologic-changes-in-patients-of-color-with-rheumatic-disease.
O’Brien J, et al. Disparities in Burden of Disease in Patients with RA Across Racial and Ethnic Groups [abstract]. Arthritis & Rheumatology. November 2021. https://acrabstracts.org/abstract/disparities-in-burden-of-disease-in-patients-with-ra-across-racial-and-ethnic-groups.
Pope, J. Racial/ethnic disparity in U.S. lupus nephritis mortality. RheumNow. November 12, 2021. https://rheumnow.com/news/racialethnic-disparity-us-lupus-nephritis-mortality.
Race, Age, Sex and Language Affected Telemedicine Use by Rheumatology Clinic Patients During COVID-19 Pandemic. American College of Rheumatology Press Release. November 1, 2021.
RheumNow Podcast – ACR 2021 Rehash (the good stuff..). RheumNow. November 12, 2021. https://www.youtube.com/watch?v=HSvFcpIk72I.
Thomason J, et al. Socioeconomic Characteristics Associated with Electronic Health Care Utilization in an Urban Rheumatology Clinic During the COVID-19 Pandemic [abstract]. Arthritis & Rheumatology. November 2021. https://acrabstracts.org/abstract/socioeconomic-characteristics-associated-with-electronic-health-care-utilization-in-an-urban-rheumatology-clinic-during-the-covid-19-pandemic.
Volansky R. Job loss, ‘dose of poverty’ worsen disability, mortality outcomes in rheumatic diseases. Healio Rheumatology. November 11, 2021. https://www.healio.com/news/rheumatology/20211110/job-loss-dose-of-poverty-worsen-disability-mortality-outcomes-in-rheumatic-diseases.
Yen E, et al. Lupus nephritis mortality in the united states, 1999-2019: profound disparities by race/ethnicity and place of residence and a recent worsening trend [abstract]. Arthritis & Rheumatology. November 2021. https://acrabstracts.org/abstract/lupus-nephritis-mortality-in-the-united-states-1999-2019-profound-disparities-by-race-ethnicity-and-place-of-residence-and-a-recent-worsening-trend/.