Addressing the Intersectional Stigma of Kaposi Sarcoma and HIV: A Call to Action

Abstract

Epidemic Kaposi sarcoma (KS), also called AIDS-related KS, is one of the most commonly diagnosed cancers in people living with HIV (PLWH). In Malawi, KS is the leading cancer overall, accounting for 34% of all malignancies recorded in the national registry. 1 Although the incidence of KS has substantially declined since the widespread adoption of antiretroviral therapy (ART), 2,3 KS rates remain high in regions disproportionately affected by HIV. 4 Furthermore, the risk of KS is still increased up to 500 times, even when HIV is well controlled on ART. 5 In sub-Saharan Africa (SSA), the region most affected by HIV, the seroprevalence of Kaposi Sarcoma Herpesvirus (KSHV), the etiologic agent of KS, exceeds 50%. 6 Because of impaired immunity attributed to HIV infection, this overlap in prevalence of KSHV and HIV has resulted in KS being among the most commonly diagnosed cancers in SSA. In spite of this elevated prevalence, awareness of KS-related stigma is limited. In this commentary, we aim to highlight the gap in KS-related stigma research and issue a call to action for key stakeholders to improve quality of life and outcomes for PLWH and patients with KS.Cutaneous disease is common in KS and is associated with profound psychosocial burden, including stigma. While KS can involve any body site, skin lesions are the most common manifestation. KS skin lesions are commonly observed on the face, extremities, and genitalia. 7 Because of dense vascularity, the lesions are often pink, red, purple, or brown in color and difficult to conceal. Lymphedema, or swelling, of the extremities and genitalia is also a common presenting symptom and, because of the impact on form and function, contributes to emotional distress. 8 Owing to the rarity of KS in HIV-uninfected people, KS is seen as a marker of HIV status, particularly severe immunodeficiency (AIDS), which results in involuntary disclosure of one's HIV status and resultant stigma. 9 Furthermore, PLWH and KS face intersectional stigma, or the convergence of multiple stigmatized identities or conditions, from both HIV and cancer. 9