The COVID-19 pandemic has influenced and shaped this year more than anything else, but a much-needed spotlight on racial and ethnic injustice — especially its impact on health and the consequent disparities it has caused — has been another defining aspect of this time.
The influence of racial justice protests following the brutal killings of George Floyd, Breonna Taylor, Ahmaud Arbery, and other Black Americans combined with alarming data on how Black and Hispanic/Latinx Americans are disproportionately affected by COVID-19 has led to an urgent need to address systemic racism in all aspects of the health care system.
This year’s annual medical meeting of the American College of Rheumatology, called ACR Convergence 2020, shared important research about racial and ethnic health disparities in the diagnosis and treatment of arthritis, lupus, and other rheumatic diseases.
In response to ongoing racial violence in the United States, earlier this year the ACR established a Diversity, Equity, and Inclusion Task Force to “assess the current state of diversity, equity and inclusion among ACR members and trainees, review best practices among medical associations, and make recommendations tailored to the unique circumstances of the ACR.”
At this year’s meeting, the task force’s cochairs, New York City-based rheumatologists Irene Blanco, MD, and Ashira Blazer, MD, led the conference’s first community hub focused on equity and inclusion, which included a forum to discuss issues and sharing resources and data to improve education and training.
“We want patients to know that health care providers are talking about the many causes of health disparities across all aspects of rheumatology. This includes who can avail of medical education, the medical education providers receive during training, and equitable access to care — from a timely diagnosis to treatments and outcomes,” says Shilpa Venkatchalam, PhD, Associate Director of Patient-Centered Research at the Global Healthy Living Foundation (GHLF).
“We at GHLF are committed to studying how to improve the diversity of patients who participate in research so we can make it more inclusive and amplify the voices and experiences of patients from all backgrounds, especially those from marginalized communities, including people of color,” she adds.
Clearly — as the studies curated below demonstrate — there is a lot of work to be done in rheumatology care specifically.
“Racist health disparities are baked into the American cake,” says patient advocate Dawn Gibson, who lives with axial spondyloarthritis and reported on the ACR conference for CreakyJoints. “The spondyloarthritis patient space, for example, is inundated with unhelpful racial essentialist thinking. Patients often contend that these are white diseases without an appropriate sense of the biological diversity present within communities of color, particularly where African descent is involved.”
Gibson thought that research from the conference demonstrated that some issues are fixable “as soon as we’re ready to do it.”
An example: rashes and skin issues in people of color.
“Psoriasis, lupus, and vasculitis are heavily rash-based. Psoriasis is often present with spondyloarthritis, but people of color have a hard time getting diagnosed. We have to reteach doctors that psoriasis can happen to anyone,” says Gibson. She notes that this entails getting pictures and documentation of how rashes present differently in different skin, disseminating that information in medical education (and to patients, so they can self-advocate), and using machine learning algorithms specifically for darker skin, to name a few places to start.
But many other types of health disparities were also highlighted at ACR — and they’re important for everyone to know about. Share them with fellow patients. Awareness is a necessary first step to address and solve them.
For more research updates from ACR Convergence 2020, check out our main guide: ACR 2020: 100+ Arthritis and Rheumatic Disease Updates Patients Must Know About.
1. Doctors feel less confident evaluating rashes in lupus patients of color
Rashes and skin issues (such as psoriasis) may present differently in people of color, leading to misdiagnoses and worse care and outcomes. Part of this issue is about training: making sure doctors have the knowledge and experience to identify and treat dermatologic issues across skin color.
A team of Washington University researchers acknowledged that “patients of color with lupus are especially vulnerable as they often carry a greater disease burden, yet studies show that individuals with darker skin tones are underrepresented in medical educational materials.” Given this disparity, they wanted to better understand doctors’ confidence assessing rashes in Black lupus patients.
They invited different types of providers (dermatologists, rheumatologists, internists, and others) to participate in a survey; 132 doctors took the survey and internists were the most represented group. In general, doctors were more confident diagnosing other kinds of rashes compared with lupus rashes specifically. They were also more confident diagnosing lupus rashes in people with fair skin than in people of color.
The results represent “a disparity between provider confidence and the patient population lupus traditionally affects,” the researchers note.
They believe that factors like specialty, years in practice, extent of training, and the frequency of treating people with different skin color all contribute to experience, which ultimately leads to more confidence.
More than 90 percent of physician participants wanted more information on this topic.
2. Poor doctor-patient communication can impact lupus patients taking medication as prescribed
Taking your medication as prescribed — called medication adherence — is critical for managing complex autoimmune conditions like lupus. In a study presented at ACR, Duke University researchers noted that medication non-adherence tends to be common in people with lupus and this leads to worse outcomes. Past research has shown medication non-adherence to be more common in Black people and other underrepresented groups, so they sought to study factors associated with non-adherence.
They looked at data on 77 lupus patients, including pharmacy refills and self-reports of medication adherence; 53 percent of people were Black, 43 percent were white, and the rest were of other racial/ethnic backgrounds.
Compared to people deemed to be adherent, “persistent non-adherence” — defined as having low scores on both self-reports and pharmacy refills at two points in time during the study — was more common in people who were younger, Black, took more lupus medications, and had worse disease activity scores.
People with persistent non-adherence also rated their communication with their doctors more poorly, specifically with regard to their providers speaking fast and using hard words.
The authors suggest that optimizing patient-provider communication (with an emphasis on providers speaking more slowly and not using doctor-speak vocabulary) could improve adherence and patients’ self-efficacy (the belief that you have what it takes to successfully manage your health condition).
3. There are scant high-quality Spanish-language educational resources for rheumatology patients
University of Iowa researchers conducted a search for Spanish-language patient education materials for rheumatologic diseases by searching for common terms (such as “joint pain” or “rheumatoid”) in Spanish on Google.
Of the 134 patient education resources identified and analyzed, only 3 percent had major medical inaccuracies, which is good news. But more than 90 percent of the resources were way above recommended reading levels for health literacy. Readability scores indicated most text was deemed “very confusing.”
The researchers concluded that “freely available rheumatologic Spanish-language [patient education materials] do not meet accepted standards for patient education” and advocate for the development of new materials that prioritize accuracy and readability.
FYI: Our Spanish-language site CreakyJoints Espanol offers patient-friendly articles for living better with arthritis. Check it out here.
4. Black people are less likely to have bilateral total knee replacement surgery
When people have severe osteoarthritis in both knees and total knee replacement surgery is recommended, there are two options: a staged unilateral surgery or a bilateral surgery.
In the former, patients have one knee surgery at a time with a few months of recovery in between. In the latter, both knees are operated on at the same time. Which procedure is recommended for a given patient depends on a lot of factors, including overall health, comorbidities, and a patient’s preferences and lifestyle.
For example, younger, healthier patients who want to avoid taking excess time off work may prefer a bilateral surgery. Unilateral surgeries are much more common in general, however.
Data presented at ACR shows that racial disparities may play a role in this choice.
Researchers, led by rheumatologist Bella Mehta, MD, at Hospital for Special Surgery in New York City, looked at a decade’s worth of data that included 276,194 bilateral knee replacements and 5.5 million unilateral knee replacements. Black people were significantly less likely to have a bilateral procedure compared to white people. However, the in-hospital complication rates between Black and white patients who had a bilateral procedure were comparable.
More research is needed to understand factors influencing the study findings.
“Health policies directed toward [Black] patients who have less comorbidities and are candidates for [bilateral total knee replacement], may help appropriate utilization of these procedures and thus working minority patients will lose less time from work,” Dr. Mehta wrote on RheumNow.
5. Black rheumatoid arthritis patients are more likely to be prescribed steroids
Glucocorticoids are steroids that are used widely to lower inflammation in autoimmune and inflammatory diseases. However, these medications have a risk of many serious side effects, such as high blood pressure, diabetes, and osteoporosis. Biologics are more advanced and targeted therapies used to treat rheumatoid arthritis and other inflammatory diseases by acting on specific parts of the immune system, which lowers inflammation and prevents joint damage.
After researchers analyzed electronic health record data from 1,831 patients with rheumatoid arthritis at an academic center in Pennsylvania from 2010 to 2018, they found disparities in how rheumatoid arthritis was treated between Black and white patients.
The glucocorticoid prednisone and conventional synthetic disease-modifying antirheumatic drug (DMARD) treatments (such as methotrexate) were used significantly more with Black patients than white patients: 79.3 percent of Black patients versus 69.1 percent of white patients used prednisone, while 96.7 percent of Black patients versus 93.5 percent of white patients used a conventional DMARD.
At the same time, 74 percent of white patients versus 67 percent of Black patients were prescribed a biologic drug.
“This project supports prior work showing reduced use of biologics and a greater use of prednisone in patients who were Black, which could potentially mean worse outcomes or increased steroid side effects in this group,” said study coauthor Michael George, MD, Assistant Professor of Medicine at the Hospital of the University of Pennsylvania. Read more here about the findings.
6. Black lupus patients have a much higher risk of stroke and heart disease
Researchers collected data from the Georgia Lupus Registry, a group of lupus patients in Atlanta who are followed over time. Researchers matched 336 lupus patients with control patients from a hospital medical records database. Three-quarters of the lupus patients were Black and 87 percent were female. The average age of lupus diagnosis was 40.
Overall, there were 38 stroke-related and 25 ischemic heart disease-related health events or deaths that occurred anywhere from two years before to 14 years after the patients were diagnosed with lupus. Ninety percent of strokes occurred in Black patients (with the peak number occurring in the second year after a lupus diagnosis) and 96 percent of ischemic heart disease cases were found in Black patients (with the peak number occurring in the 14th year after diagnosis).
This translates to a threefold higher stroke risk and 24-fold higher ischemic heart disease risk for Black lupus patients than others.
“It’s important to quantify the risk, predictors, and timing of stroke and ischemic heart disease in Black people with lupus in order to guide early cardiovascular disease diagnosis and preventive interventions in this at-risk population,” said study coauthor Shivani Garg, MD, Assistant Professor of Medicine at the University of Wisconsin School of Medicine and Public Health. Read more here about the findings.
7. Black and Hispanic/Latinx rheumatic disease patients have more COVID-19 hospitalizations and complications
Ample research shows that Black, Hispanic/Latinx, and other groups are contracting coronavirus and becoming extremely ill from it at disproportionately high rates. This alarming association also appears to hold true when it comes to people with rheumatic conditions.
In a study of more than 1,000 rheumatic disease patients presented at ACR, Black, Hispanic/Latinx, and mixed/other race rheumatology patients had two to three times higher odds of hospitalization compared to white rheumatic disease patients. Among those who were hospitalized, Hispanic/Latinx patients also had increased odds of being put on a ventilator compared to white patients.
Lead author Milena Gianfrancesco, PhD, MPH, Assistant Professor of Medicine at the University of California, San Francisco School of Medicine, says that rheumatologists, public health experts, and the community at large should aim to address these disparities.
“Proactive steps might include “creating informational materials in multiple languages about the risks of COVID-19 and precautions that should be taken, [as well as] encouraging targeted testing for high-risk patients and communities,” she says. Read more here about the findings.
8. Loneliness and isolation are determinants of health in Black and Hispanic/Latinx people with arthritis and rheumatic diseases
There’s no question that loneliness and social isolation are bad for your health, with studies linking increased loneliness and isolation to poor quality of life, depression, and risk of earlier death.
There hasn’t been much research, though, on how loneliness and social isolation affect people with arthritis — and specifically those who are people of color. University of Rochester Medical Center researchers are in the middle of surveying 1,000 local patients individually and in focus groups to assess loneliness and social isolation in these patient communities.
Initial surveys (110 have been completed so far) indicate that people of color with arthritis scored worse on measures of loneliness and social isolation than people without chronic medical conditions. In focus groups, participants mentioned spirituality as a way to overcome social isolation. Another theme contributing to loneliness, researchers noted, was “the role of race and not fitting in to the ‘white society.’”
The authors concluded that “efforts to measure these social determinants and develop methods to address them are important steps in implementing strategies to overcome health care disparities.”
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Anandarajah A, et al. Loneliness and Social Isolation Are Important Social Determinants Among Patients from Minority Communities with Rheumatic Diseases [abstract]. Arthritis & Rheumatology. November 2020. https://acrabstracts.org/abstract/loneliness-and-social-isolation-are-important-social-determinants-among-patients-from-minority-communities-with-rheumatic-diseases.
Barr AC, et al. Hurried Communication and Low Patient Self-Efficacy Are Associated with Persistent Non-Adherence to SLE Medications [abstract]. Arthritis & Rheumatology. November 2020.https://acrabstracts.org/abstract/hurried-communication-and-low-patient-self-efficacy-are-associated-with-persistent-non-adherence-to-sle-medications.
Equity and Inclusion in Rheumatology Education: Dr. Irene Blanco. RheumNow. November 9, 2020. https://rheumnow.com/video/equity-and-inclusion-rheumatology-education-dr-irene-blanco.
Garg S, et al. Racial Disparities and New SLE-Specific Predictors of Stroke and Ischemic Heart Disease in Patients with Lupus [abstract]. Arthritis & Rheumatology. November 2020. https://acrabstracts.org/abstract/racial-disparities-and-new-sle-specific-predictors-of-stroke-and-ischemic-heart-disease-in-patients-with-lupus.
Gianfrancesco M, et al. Race/ethnicity Is Associated with Poor Health Outcomes Amongst Rheumatic Disease Patients Diagnosed with COVID-19 in the US: Data from the COVID-19 Global Rheumatology Alliance Physician-Reported Registry [abstract]. Arthritis & Rheumatology. November 2020.
He E, et al. Characterization of Racial Disparities in Rheumatoid Arthritis Treatment Choice and Location of Care [abstract]. Arthritis & Rheumatology. November 2020. https://acrabstracts.org/abstract/characterization-of-racial-disparities-in-rheumatoid-arthritis-treatment-choice-and-location-of-care.
Kannuthurai V, et al. Healthcare Practitioner Confidence Assessing Rashes in Patients of Skin of Color with Lupus [abstract]. Arthritis & Rheumatology. November 2020. https://acrabstracts.org/abstract/healthcare-practitioner-confidence-assessing-rashes-in-patients-of-skin-of-color-with-lupus.
Mehta B. Racial Disparities in Bilateral Knee Arthroplasty in Osteoarthritis. RheumNow. November 6, 2020. https://rheumnow.com/news/racial-disparities-bilateral-knee-arthroplasty-osteoarthritis.
Mehta B, et al. Bilateral vs Unilateral Total Knee Arthroplasty: Racial Variation in Utilization and In-Hospital Major Complication Rates [abstract]. Arthritis & Rheumatology. November 2020. https://acrabstracts.org/abstract/bilateral-vs-unilateral-total-knee-arthroplasty-racial-variation-in-utilization-and-in-hospital-major-complication-rates.
Zahn C, et al. ¿Comprende? Assessing the Readability of Freely Available Spanish-Language Online Patient Education Materials for Rheumatologic Diseases [abstract]. Arthritis & Rheumatology. November 2020.https://acrabstracts.org/abstract/comprende-assessing-the-readability-of-freely-available-spanish-language-online-patient-education-materials-for-rheumatologic-disease.