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Lack of Awareness, Cultural Barriers Impact Racial, Ethnic Groups Hit Hardest by SLE, CLE


Patient education is an important step toward improving outcomes for racial and ethnic groups disproportionately affected by lupus, but a new report suggests payers and physicians also have more to learn about the problem.

The findings come from a paper presented at the Academy of Managed Care Pharmacy’s 2022 Annual Meeting, which took place from March 29 to April 1 in Chicago, Illinois.

Black and Hispanic Americans are known to be at a higher risk of both systemic lupus erythematosus (SLE) and cutaneous lupus erythematosus (CLE), compared with White patients, noted co-author Saira Z. Sheikh, MD, of the University of North Carolina at Chapel Hill and colleagues. In light of these disparities, the authors said it is important to understand challenges and barriers faced by patients in racial and ethnic groups disproportionately affected by lupus.

In order to find out what those barriers are, the investigators interviewed a diverse range of patients, along with physicians who care for patients with lupus, and formulary decision-makers from a variety of health care payer organizations.

The 33 patients interviewed in the study varied in age, although the majority (17 patients) were within the ages of 46 and 65. Nearly half of the patients were Black (16), and nearly one-third (10 patients) were Hispanic. Five members of Asian/Pacific Islander descent were included, along with 2 people of Native American heritage. Most of the patients (70%) had SLE; 12% had CLE, 9% had both SLE and CLE, and another 9% had an unknown type of lupus.

Patients said their barriers to care included a lack of awareness about lupus symptoms, experiences in which they felt ignored or dismissed by medical professionals, and difficulties accessing branded medications due to insurance limitations or lengthy authorization processes.

Twenty physicians were interviewed in the study, most of whom (12) were White. Like the patients interviewed, the physicians cited concerns about implicit bias and difficulty getting patients access to needed medication. However, they also cited different concerns, such as language barriers with patients, and a lack of culturally relevant educational materials.

The 20 payers interviewed were split mostly among national (30%) and regional (25%) managed-care organizations or integrated delivery networks and integrated payer/provider networks (25%). For their part, payers said lupus is not typically an area of focus due to the fact that most patients use relatively low-cost generic treatments. The payers argued that many existing treatments lack sufficient real-world evidence and come with safety and tolerability problems, which the payers said drive up costs. They argued that disease-modifying therapies with better efficacy and tolerability are needed.

Sheikh and colleagues made a number of recommendations based on their findings. First, they said health care systems should focus on increasing disease awareness, establishing patient-support networks, and improving patient-physician understanding. The authors said payers would benefit from education on the challenges faced by patients with lupus, particularly within these over-represented groups.

“Most payers were not fully aware of the variance in lupus prevalence between genders and ethnicities” the authors noted. “This emphasizes the importance of drug manufacturers communicating the disproportionate impact of lupus on these groups.”

The investigators said fewer than one-third of payer respondents said their organization had a patient- or physician-focused program designed to reach out to minority populations, and none of those programs were focused specifically on lupus.


Sheikh SZ, B Goncalves Silva CE, Gaiha-Rohrbach J, Butts C, O’Callaghan L. Increasing access to care and lupus treatments for individuals from underrepresented communities living with lupus: insights from qualitative interviews with patients, physicians, and payers. Presented at Academy of Managed Care Pharmacy 2022 Annual Meeting; March 29-April 1, 2022; Chicago, IL. Abstract M8.

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