World AIDS Day: Focusing the Lens on Equity for HIV-Associated Cancers - the Case of Kaposi Sarcoma
, by Esther Freeman, M.D., Ph.D, Sigrid Collier, M.D., M.P.H., Aggrey Semeere, MBChB, MMed
Esther E. Freeman, M.D., Ph.D. Department of Dermatology, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA Center for Global Health, Massachusetts General Hospital, Boston, MA, USA Medical Practice Evaluation Center, Massachusetts General Hospital, Boston, MA, USA
Sigrid Collier, M.D., M.P.H. University of Washington, Seattle, WA, USA
Aggrey Semeere, MBChB, MMed Infectious Disease Institute, Makerere University, Kampala, Uganda
This December 1st, World AIDS Day 2022, is a chance to reflect on the global burden of HIV/AIDS, the lives lost, and the advances of science and community in the four decades of the epidemic. This year’s theme “Putting Ourselves to the Test: Achieving Equity to End HIV “ emphasizes accountability and action, and puts the spotlight on equity (1).
As researchers in Kaposi’s sarcoma (KS), an HIV-associated cancer, we have observed the burden caused by inequities in access to care. The highest burden of HIV/AIDS in the world is in sub-Saharan Africa, with 20.6 million people living with HIV in the region (2). Cancer is also on the rise in this population – with more than 55% of new cancer cases arising in developing nations (3). The synergy between HIV/AIDS and cancer –known as the “shadow epidemic” – means that many patients are facing a dual burden of infection and malignancy, resulting in poor outcomes, particularly in resource-limited settings.
Our team’s work in Uganda and Kenya focuses on Kaposi sarcoma (KS), which remains highly incident even in the era of antiretroviral therapy. KS diagnosis in Uganda and Kenya is often made late in the disease course (4), when treating KS with antiretroviral therapy combined with chemotherapy may not be enough: one-year mortality may be as high as 35% (5).
It is tempting to ‘blame’ patients for presenting to care late; however, this assumption misses the multifactorial root causes of delays in diagnosis (6). Many patients sought care from multiple biomedical healthcare providers who lacked training in KS and missed the diagnosis before the patient was ultimately diagnosed 6-12 months later. Other patients, often influenced by prior negative experiences with the biomedical healthcare system, have sought care from traditional healers prior to or in conjunction with the healthcare system (6). Even when a healthcare provider suspects KS, many clinics and hospitals lack skin biopsy capability, even though this relatively simple procedure can be task-shifted to clinical officers or nurses working on the front line (3, 7).
For patients who do manage to obtain an accurate diagnosis of KS, the road to successful treatment is not easy. Only 56% of patients who are eligible for chemotherapy receive it in the year after diagnosis (8). Financial barriers, such as the cost of transport to the clinic for chemotherapy infusion, or the cost of chemotherapy itself, when not covered by health insurance such as Kenya’s National Health Insurance Fund (NHIF), can be crippling or completely prohibitive. Additional barriers identified in our work include difficulty with appointments, such as distance to the facility, appointment times, long lines, limited appointments, intrapersonal barriers such as fear or hopelessness, and the lack of proper or sufficient information about chemotherapy (9).
Even when patients qualify for and obtain chemotherapy, there can be inequity in the type of chemotherapy they receive (10). WHO Guidelines for KS treatment have differential advice depending on where the patient lives (11). The WHO noted that bleomycin-vincristine, which is an older, less effective form of chemotherapy than liposomal doxorubicin or paclitaxel, was an acceptable alternate form of treatment in resource-limited settings due to the unavailability of preferred regimens. Settling for this kind of inequity reminds us of the words of Paul Farmer: “If access to health care is considered a human right, who is considered human enough to have that right (12)?" To address this, we evaluated the cost-effectiveness of different chemotherapy regimens for HIV-associated KS in the East African context and found that treating with paclitaxel was the most cost-effective strategy (preferred over bleomycin-vincristine) and increased life expectancy by 4.2 years per person (13).
Stigma also plays an important role in every step of the care cascade, from diagnosis to treatment. In “telling the story of intersectional stigma in HIV-associated Kaposi's sarcoma in western Kenya: a convergent mixed-methods approach,” we explored the complex interplay between HIV-related stigma, cancer-related stigma, and skin disease-related stigma in patients living with HIV/AIDS recently diagnosed with KS. Fear of HIV status disclosure, fatalism, and visible skin lesions contributed to delays in care and suffering in the lived experience of our patients (14).
So what are steps we can take to address these issues? How can we achieve equity to address HIV-associated cancers, and honor this year’s World AIDS Day theme?
No single intervention will be able to combat barriers to access, recognition, diagnosis, and treatment. However multi-component interventions can target each of these steps, collectively targeting this cascade of care. Healthcare providers can be trained in recognition and management. Biopsy procedures can be task-shifted to different cadres of healthcare providers, similar to what has been done in the world of global mental health care (3). We can move towards point-of-care diagnostics, as our team is doing with TINY, a portable, solar-powered PCR device with sensitivity and specificity comparable to the gold standard skin biopsy with anti-LANA staining (15,16). Point-of-care diagnostics like TINY will allow for cheap, easy bedside KS diagnosis, allowing physicians to link patients in with care more promptly.
Patient and peer navigation programs can help patients find their way through the healthcare system, physically, financially, and emotionally (17). We can advocate for cost-effective treatment choices, which save lives and reduce disease burden, such as treatment with efficacious chemotherapy like paclitaxel or liposomal doxorubicin (13).
Taken together, these steps will improve the lives of those affected by HIV-associated cancers such as Kaposi sarcoma and further reduce loss of life. We have not yet “achieved equity” for HIV-associated cancers, but we now have many different tools at our disposal that can target steps in the cascade of care for our most vulnerable patients.