Evaluating the Impact of Intersectional Stigma on Linkage to Cancer Care in HIV-Associated Kaposi's Sarcoma in East Africa

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This application is being submitted in response to the Notice of Special Interest (NOSI) identified as "NOT- CA-21-026”. In sub-Saharan Africa, Kaposi’s sarcoma (KS) remains one of the most common HIV-related cancers and — by virtue of the high prevalence of HIV infection in the region — one of the commonest in the general population. Not only is KS common in Africa, but it is also frequently fatal; two-year mortality following KS diagnosis is as high as 45%. Reasons for poor survival are diverse, but one potentially modifiable cause is failure to promptly link patients to cancer care following diagnosis. In one setting in Kenya, for example, only 50% of patients with KS clinically eligible for chemotherapy actually received it. Stigma occurs when individuals are recognized, labeled as “other”, and discriminated against because of socially undesirable characteristics. In resource-rich settings, the health consequences of stigma, including amongst persons with cancer, have been recognized for over 50 years. In resource-limited settings, stigma has been most intensely studied amongst persons with HIV infection. There has been comparatively scant investigation of stigma amongst patients with cancer in resource-limited settings, but where it has been studied, manifestations are similar to resource-rich settings. HIV-associated KS in Africa has the potential to confer three co-occurring forms of stigma: cancer-related stigma, skin disease-related stigma, and HIV-related stigma. As such, this cancer provides a unique lens to study stigma in resource-limited settings. If present amongst patients with HIV-associated KS, these three “intersecting” forms of stigma may impact healthcare engagement at many levels, including the crucial initial linkage to cancer care after diagnosis. As an administrative supplement to U54 CA254571, our overarching goal is to study the magnitude and impact of stigma on linkage to care in patients with HIV-associated KS in East Africa. Our specific aims are: Aim 1. Describe intersectional stigma in patients with newly diagnosed HIV-associated KS. Using semi-structured interviews and quantitative instruments, we will describe the prevalence and relationship between 3 forms of stigma: a) cancer-related, b) skin disease-related; and c) HIV-related. Aim 2. Assess the impact of stigma on linkage to cancer care in HIV-associated KS. Among patients with newly-diagnosed HIV-associated KS in western Kenya, we will evaluate the impact of the 3 stigma types on linkage to cancer care, defined as time to a) first Oncology Clinic visit, b) first evaluation by an oncology provider at the clinic qualified to make a treatment plan, and c) initial chemotherapy use. To address these aims, we will study stigma in an already-existing population laboratory for the investigation of HIV-associated KS in the AMPATH network in western Kenya, supported by parent grant U54 CA254571. Findings from this work are expected to expand our understanding of stigma and its impact on linkage to care in patients with KS and inform future stigma reduction interventions for all cancers in sub-Saharan Africa.