Survey Finds Widespread Perceived Inequities in Care for Adults with Sickle Cell Disease

An international survey study has highlighted significant disparities in perceived healthcare experiences among adults living with sickle cell disease (SCD) and recurrent vaso-occlusive crises (VOCs), particularly among those who report being treated unfairly by healthcare providers. The findings were published in Drugs—Real World Outcomes and reflect responses from 110 participants across the United States, United Kingdom, France, Germany, and Italy.

Participants, most of whom were Black or African American and based in the U.S., reported high levels of disease burden. Nearly 67% had experienced at least four VOCs in the previous year, and more than 83% had used opioids to manage pain. Despite this, 64.7% felt their symptoms were not believed by healthcare professionals, and 68.6% believed they would receive better treatment if they were of a different race or ethnicity.

Survey respondents were grouped by whether they had ever felt unfairly treated during healthcare encounters. Those who reported unfair treatment were more likely to report longer-lasting and more severe pain episodes, increased emergency department (ED) wait times, and more days spent hospitalized over the previous year compared to those who did not report unfair treatment.

Participants in the “unfair treatment” group reported significantly more perceived barriers to care. These included a lack of provider empathy (66.7% vs 33.3%, p = 0.004), limited provider knowledge of SCD (61.5% vs 37.5%, p = 0.038), being perceived as drug seekers (57.7% vs 25.0%, p = 0.005), and experiences of racial or ethnic prejudice (52.6% vs 25.0%, p = 0.018).

Pain interference and overall quality of life measures also varied notably by group. Those reporting unfair treatment more frequently described pain as severe or very severe and indicated greater difficulty in performing daily activities. Additionally, they reported lower self-efficacy, including reduced confidence in managing SCD-related symptoms and challenges without medications.

Emergency department wait times further illustrated these disparities. Over one-third of the “unfair treatment” group reported waiting more than 60 minutes just to check in upon arrival, followed by additional delays in receiving treatment—a timeline inconsistent with clinical guidelines that recommend prompt management of SCD pain crises.

The authors note that addressing these disparities will require targeted efforts to reduce stigma, improve provider education on SCD, and ensure equitable access to timely, patient-centered care. They also emphasize the need for innovations that can reduce reliance on acute care settings by better preventing VOCs.

The study was funded by Vertex Pharmaceuticals and conducted in collaboration with patient advocacy groups. While limited by its self-selected participant pool and adult-only focus, the research offers a detailed view of how perceived inequities may impact clinical outcomes and quality of life for people living with SCD.