The COVID-19 pandemic exposed glaring health disparities faced by people of color, who experienced disproportionate levels of SARS-CoV-2 infection and adverse outcomes.1 These poor health outcomes garnered increased global attention and prompted investigations into existing disparities among individuals with other health conditions, including rheumatic diseases such as rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE).1-4
Recent research has shown large discrepancies in the care and outcomes of patients with rheumatic diseases such as RA, SLE, osteoarthritis, and systemic sclerosis across racial and socioeconomic groups.1-4 Little progress has been made over time, despite recognition of these gaps.
The question remains — what barriers are limiting progress towards health care equity and what steps can the medical industry take to reduce these disparities among patients with rheumatic diseases?
Key Issues Limiting Progress
One of the primary factors inhibiting progress towards reducing health care disparities in rheumatology involves patient accessibility to quality care.1,2,4
“The reality is that racial disparities in health care, including rheumatology, have more to do with access to care than biological differences between patients,” stated Ashira Blazer, MD, assistant professor of rheumatology at New York University Langone Medical Center. 6
A variety of factors impede access to high-quality health care among disadvantaged racial and socioeconomic groups, including:
- Geospatial factors
- Lack of insurance
- Language barriers
Geospatial causes of health care disparities include the unequal distribution of specialty care clinics and concentration of hospitals in rural areas and low or middle-income communities, as well as a lack of affordable transportation to and from clinics located farther away.
Persons living in these communities may be less likely to seek out or adhere to treatment and are more likely to receive inconsistent care and monitoring of their conditions. This is due in part to the increased length of travel required to reach specialized facilities that provide high-quality care for patients with rheumatic diseases.4,5
Poverty and Insurance Barriers
Poverty status and insurance barriers also limit accessibility to quality care and contribute to worse health outcomes. Individuals of lower socioeconomic status face various challenges when seeking access to care, including low-wage employment, decreased sick leave, lack of adequate medical insurance to cover care costs, inability to afford costly transportation to and from their appointments, and problems finding childcare coverage.
Persons living in marginalized communities also experience higher levels of stress associated with increased crime, infestations, pollution, housing insecurity, and limited access to healthy food.4
Poverty is the most important predictor of patient mortality due to increased damage accrual and survival disadvantages among patients with rheumatic diseases, such as SLE. In the US, “poverty…is pervasively associated with ethnic minority status.”4,7
Language barriers further prevent access to quality care among certain groups. Research indicates that significant communication errors occur due to use of impromptu, rather than well-trained, interpreters and decreased ability for physicians to communicate with patients who are nonnative speakers.4,8,9
Research has indicated that providers, including rheumatologists, demonstrate implicit biases towards specific racial and ethnic groups when providing care. For example, providers are less likely to recommend standard of care treatments to individuals of African ancestry with SLE compared against individuals of other races.4,10
Persons of color are less likely to receive high-quality rheumatology care that exhibits certain hallmarks, such as screening prior to immunosuppression, appropriate prophylaxis, and judicious corticosteroid use, leading to increased mortality due to infections among Black, Asian, and Native American patients with SLE.4,11
Black patients may demonstrate decreased adherence to medication treatments for SLE when compared with patients of other races. This is likely due to fewer compassionate, respectful, unhurried encounters with their providers and increased anxiety and negative emotions surrounding their care experience.4,12
“The first thing that needs to change is the mindset of physicians and scientists,” Dr Blazer stated. “We need to internalize a different view of what race is before we can tackle it…Race is a social construct, not biology.”6
Race is often theorized as a risk factor for more severe disease. As a consequence, the social construct of racial identity is mistakenly conflated with biologic or genetic constructs of race.4 In reality, structural racism underlies and preserves the cycle of poverty and inequitable access to care and education, as well as environmental factors that influence disease outcomes and prevalence.4
Researchers recently investigated the representation of dark skin color across clinical images in rheumatology provider educational materials. They discovered that persons of color are less likely to be represented in these educational materials (84% light skin, 13.4% dark skin, and 2.6% indeterminate skin color). Rheumatologists in training may not be able to recognize cutaneous signs and symptoms of rheumatic diseases among persons of color due to this lack of representation among training materials, leading to further health care disparities.13
Underrepresentation in Research
Underrepresentation of marginalized communities and persons of color in clinical trials and research further contribute to health disparities.1,4 Lack of diversity in clinical trials maybe the result of many factors, including enrollment practices, lack of provider referrals to clinical studies, lack of resources to support participation in clinical trials, and strong mistrust among certain communities due to the historical precedence for abuse in research studies (eg, the Tuskegee syphilis study).14
Diversity within clinical trials allows for improved generalizability of research findings to the entire population and increased awareness and biological insights into how specific treatments may affect the health of persons of color differently. Improved biomedical knowledge among providers can better inform treatment strategies that impact health outcomes.14
Community and individual level strategies may help to mitigate factors contributing to health disparities related to race or socioeconomic status. While these strategies may have an impact to a certain degree, acknowledgement that health care disparities are systemic issues that ultimately require structural alterations is a critical component to achieving lasting and widespread change.4
Community-centered initiatives may include:1,4,14
- Diversifying the rheumatology workforce to include more providers of color, as patients of color demonstrate increased trust and adherence to care recommendations from providers who share the same racial or ethnic background
- Forming partnerships between academic and community-based organizations
- Increasing funding to encourage diversity in research, as well as providing financial incentives and compensation for the time and effort spent participating in clinical research
- Advocating for institutions and community agencies to perform more routine data collection with regards to race, ethnicity, and socioeconomic status to shed light on existing disparities within these communities
- Improving outreach efforts to marginalized communities to reestablish trust and communication
- Providing transportation services and parking vouchers for disadvantaged individuals living farther away from specialty clinics
- Providing childcare services to enable individuals who may not have the resources to afford childcare to routinely attend rheumatology appointments, join clinical trials, and/or receive treatments that require in-person clinic visits
- Building inclusive clinical trial infrastructures or considering decentralized clinical trial designs to improve participation among underserved communities
- Establishing community-based and easily accessible programs, such as smoking cessation classes, fresh food markets, and free support groups to assist with chronic disease management3
- Establishing programs that support efforts to improve health literacy among local communities that may not have equitable access to educational opportunities
Self-management and encouragement of lifestyle modifications may prevent or reduce health disparities among people of color and those who are socioeconomically disadvantaged. Routine exercise, a healthy diet, prevention of obesity, and cessation of smoking among individuals with lower socioeconomic status and educational level can supplement pharmacological treatments for rheumatic diseases, such as RA.15
Encouragement of lifestyle modifications can reduce levels of disease activity and comorbid conditions caused by proinflammatory processes and help prevent worse outcomes among these patient populations. This may consequently reduce existing health disparities.15
Provider communication using plain language (both oral and written) that patients can understand and act upon with confidence can improve patient health literacy and empower them to take charge of their health.
One-on-one peer mentorship programs may assist individuals with rheumatic diseases to better understand, learn, and regularly practice the skills required for self-management of their condition. This may be an especially important outreach program for individuals who are unable or choose not to receive routine monitoring and care from their rheumatologists.4
Mandatory workshops, conferences, and training modules to address implicit bias among providers, as well as initiatives to increase interest in healthcare professions among people of color, may address some of the barriers to equitable health care.4
“We…have to diversify the rheumatology workforce so that we can come up with solutions that apply to the different communities where we all come from, and make it easier for patients to access high quality care,” stated Iris Navarro-Millán, MD, assistant professor of medicine at Weill Cornell Medicine and the Hospital for Special Surgery. 6
During the COVID-19 pandemic, in-person visits to rheumatologists declined substantially, given the increased susceptibility to infection secondary to immunosuppression among those with rheumatic diseases.16,17 These disruptions to rheumatological care disproportionately affected patients with lower socioeconomic status and racial/ethnic minorities.16
Subsequently, a rise in the use of telehealth services helped to offset these disruptions. However, disparities due to care access still affects certain vulnerable groups who may not have access to the technology required for telehealth services.16
Another technological advancement that may decrease health care disparities includes mobile health initiatives to perform remote patient monitoring, point-of-care diagnostics, data collection, management of medications, direct provision of care, and medical imaging.4,18
Mobile health (mHealth) is defined by the World Health Organization (WHO) as a “medical and public health practice supported by mobile devices, such as mobile phones, patient monitoring devices, Personal Digital Assistants (PDAs), and other wireless devices.”19 The WHO reported that mHealth is rapidly becoming an important resource for health services delivery and public health, and can help to ensure access to quality care services.20
These various community-based, individual, and technological initiatives have the potential to reduce health care disparities from a grassroots level. However, to truly eliminate the disparities that are fueled by systemic issues surrounding race and socioeconomic status, the underlying structure of the medical system itself,4 and perhaps that which is at the very core of societal constructs, the hearts, preconceptions, and philosophies of all people, must change.
- Taylor T, Yazdany J, Gianfrancesco MA. The racial/ethnic and sociocultural aspects of the pandemic in rheumatology. Best Pract Res Clin Rheumatol. 2021;35(1):101665. doi:10.1016/j.berh.2021.101665
- Yip K, Navarro-Millán I. Racial, ethnic, and healthcare disparities in rheumatoid arthritis. Curr Opin Rheumatol. 2021;33(2):117-121. doi:10.1097/BOR.0000000000000782
- Izadi Z, Li J, Evans M, et al. Socioeconomic disparities in functional status in a national sample of patients with rheumatoid arthritis. JAMA Network Open. Published online August 4, 2021. doi:10.1001/jamanetworkopen.2021.19400
- Hasan B, Fike A, Hasni S. Health disparities in systemic lupus erythematosus—a narrative review. Clin Rheumatol. 2022;41(11):3299-3311. doi:10.1007/s10067-022-06268-y
- Feldman CH, Costenbader KH, Solomon DH, Subramanian S, Kawachi I. Area-level predictors of medication nonadherence among U.S. Medicaid beneficiaries with lupus: a multilevel study. Arthritis Care Res (Hoboken). 2019;71(7):903-913. doi:10.1002/acr.23721
- Jarrett K. Racial disparities in rheumatology are about access, not biology. ACR Convergence Today. Published November 6, 2021. Accessed August 4, 2023.
- Durán S, Apte M, Alarcón GS. Poverty, not ethnicity, accounts for the differential mortality rates among lupus patients of various ethnic groups. J Natl Med Assoc. 2007;99(10):1196-1198.
- Nápoles AM, Santoyo-Olsson J, Karliner LS, Gregorich SE, Pérez-Stable EJ. Inaccurate language interpretation and its clinical significance in the medical encounters of Spanish-speaking Latinos. Med Care. 2015;53(11):940-947. doi:10.1097/MLR.0000000000000422
- Sudore RL, Landefeld CS, Pérez-Stable EJ, Bibbins-Domingo K, Williams BA, Schillinger D. Unraveling the relationship between literacy, language proficiency, and patient–physician communication. Patient Educ Couns. 2009;75(3):398-402. doi:10.1016/j.pec.2009.02.019
- Fernández M, Alarcón GS, Calvo-Alén J, et al. A multiethnic, multicenter cohort of patients with systemic lupus erythematosus (SLE) as a model for the study of ethnic disparities in SLE. Arthritis Rheum. 2007;57(4):576-584. doi:10.1002/art.22672
- Falasinnu T, Chaichian Y, Palaniappan L, Simard JF. Unraveling race, socioeconomic factors, and geographical context in the heterogeneity of lupus mortality in the United States. ACR Open Rheumatol. 2019;1(3):164-172. doi:10.1002/acr2.1024
- Sun K, Eudy AM, Criscione‐Schreiber LG, et al. Racial disparities in medication adherence between African American and Caucasian patients with systemic lupus erythematosus and their associated factors. ACR Open Rheumatol. 2020;2(7):430-437. doi:10.1002/acr2.11160
- Strait A, Graf J, Margaretten M, Yazdany J, Goglin S. Race, ethnicity, and disparities in rheumatology educational materials. Arthritis Care & Research. 2022;74(9):1416-1420. doi:10.1002/acr.24602
- Schwartz AL, Alsan M, Morris AA, Halpern SD. Why diverse clinical trial participation matters. NEJM. 2023;388(14):1252-1254. doi:10.1056/NEJMp2215609
- Schäfer C, Keyßer G. Lifestyle factors and their influence on rheumatoid arthritis: a narrative review. J Clin Med. 2022;11(23):7179. doi:10.3390/jcm11237179
- George MD, Danila MI, Watrous D, et al. Disruptions in rheumatology care and the rise of telehealth in response to the COVID‐19 pandemic in a community practice–based network. Arthritis Care Res (Hoboken). 2021;73(8):1153-1161. doi:10.1002/acr.24626
- The immune system & rheumatic disease. ACR. Accessed August 4, 2023.
- Resnick R. What is mHealth and how can it improve patient care? Accessed August 4, 2023.
- mHealth. WHO. Accessed August 4, 2023.
- mHealth: Use of appropriate digital technologies for public health. WHO. Published March 26, 2018. Accessed August 4, 2023.