Alaska Native/American Indian (AN/AI) people living with HIV in Alaska are often diagnosed at a later stage of HIV infection than other populations. Some individuals diagnosed with HIV in their home communities may refuse care and outreach efforts until they have contracted a severe opportunistic infection that sometimes requires a medevac to Anchorage, the largest city in Alaska. Even when AN/AI people living with HIV have been tested and diagnosed, some refuse care out of fear of being ostracized as a result of disclosure to family or community members. The experience of, or fear about the possibility of experiencing, HIV-related stigma appears often to be a significant factor at the root of these suboptimal outcomes.
To document and better understand experiences of stigma among AN/AI people living with HIV, the Alaska Native Tribal Health Consortium’s HIV/STD Program Services (through its Early Intervention Services and HIV/STD Prevention Program) is implementing the People Living with HIV Global Stigma Index (“Stigma Index”). The Stigma Index was first launched in 2008 as a tool to be used by and for people living with HIV to measure the extent and impact of stigma and discrimination experienced by people living with HIV. More than 100 countries have implemented it to date, but this is the first time it will focus on an only Indigenous population.
The Stigma Index is a cross-sectional survey with primarily closed-ended questions focused on disclosure, various levels of experience of stigma and discrimination, and incidents of human rights abuse. It was designed as a standardized data collection tool to allow comparisons of findings across study sites and within an international context while also allowing for adaption to the local context. Because the process of carrying out the Stigma Index project must be empowering for those being surveyed, their networks, and local communities, the surveys are being conducted by interviewers who are AN/AI people living with HIV that are trained as Peer Community Researchers as part of the Stigma Index process and supported by study personnel.
Due to the COVID-19 pandemic, data collection currently cannot occur in person. As a result, surveys will now be collected using online platforms like Zoom. Once data collection is complete, the Consortium’s team will develop recommendations based on findings to improve the diagnosis, linkage to and engagement in care, and support services utilization of AI/AN people living with HIV.
This program is one of several Indian Health Service activities supported by the Minority HIV/AIDS Fund (MHAF) in Fiscal Year 2020.