Need for Greater Involvement of Indigenous Peoples in Decision-Making Processes for Global Response to HIV/AIDS

Written by: Onyeka Christian Okafor

Nigeria Leader for the International Indigenous Working Group on HIV & AIDS (IIWGHA)

The disparities in the epidemiology of HIV/AIDS between Indigenous Peoples and the rest of the world population calls into question the level of involvement of Indigenous Peoples in the decision-making processes of the global response to HIV and AIDS. According to the 2020 global AIDS statistics, there are estimated 38 million people living with HIV, out of which Sub-Sahara Africa accounts for 61% of people living with HIV globally. Other regions with significant incidence of HIV and AIDS are Asia and the Pacific, Latin America and the Caribbean, Eastern Europe and Central Asia, with Asia also contributing over 30% of the world total population of people living with HIV.

Indigenous Peoples are described as socially and culturally distinct groups that share collective ancestral ties to the lands and natural resources where they live, whether or not they continue to occupy or have been displaced from such traditional territories. Indigenous Peoples make up around 5% of the global population while accounting for about 15% of the world extreme poverty with up to 20 years lower life expectancy than that of the non-indigenous people worldwide. In other words, there are about 500 million Indigenous Peoples globally living in over 90 countries, with inextricable links to their lands and natural resources as evident in their identities, cultures, livelihoods, as well as their physical, mental, emotional, and spiritual well-being. Most often, they depend on their customary indigenous leadership and organizations for representations, and many still maintain their distinct language different from the official languages of the country in which they reside. Indigenous Peoples generally lack control over their land and natural resources due to colonialism, racism, poverty, and other forms of discrimination. Consequently, they suffer limited access to basic education, healthcare, income generation and other essential services.

HIV, first identified in the early 1980s, has continued to pose as a major global public health concern. By the year 2000, infection rates were still rising, and that year 2.4 million human beings died with HIV. In November 2020, the World Health Organization reported that over 34 million peoples died of AIDS. There is no known cure for HIV infection. The scourge can only be managed through effective prevention, diagnosis, treatment, and retention in care. A number of factors have been identified to be responsible for the spread of HIV/AIDS. HIV can be spread through sexual contact, sharing needles and during pregnancy or delivery or through breast-feeding. Less commonly HIV can be transmitted through blood transfusions. But HIV is more than a medical problem, it’s a social and political problem. Hundreds of thousands of people still die of AIDS every year.

As the new UNAIDS Global AIDS Strategy points out, the world has proof of concept that ending AIDS as a public health threat by 2030 is possible with the knowledge and tools that already exist. With new diagnostics, prevention tools and treatment, we can move even faster until the day we have an HIV vaccine, and a functional cure. “Despite all our efforts, progress against HIV remains fragile in many countries and acutely inadequate among key populations, globally and among priority populations, such as children and adolescent girls and young women in Sub-Saharan Africa.”

A range of social, economic, racial and gender inequalities, social and legal environments that impede rather than enable the HIV response, and the infringement of human rights are slowing progress in the HIV response and across other health and development areas. Disparities in the HIV response remain because we have not successfully addressed the societal and structural factors that increase HIV vulnerability and diminish people’s abilities to access and effectively benefit from HIV services. Recognizing the equal worth and dignity of every person is not only ethical, it is critical for ending AIDS.

It is not surprising then that there are high rates of HIV prevalence among Indigenous populations as the barriers to the HIV response outlined exist in Indigenous communities around the world. Since the early days of HIV epidemic, Indigenous Peoples have been identified as a population group that experience social and economic determinants that increase exposure to all pandemics, including COVID-19 and HIV.

Agulu Lake, Anambra State Nigeria


Governments and communities have made much progress in combating the impact of HIV/AIDS through various interventions, to prevent new infections and scale up access to treatment. There are also several international mechanisms engaged in the global response to HIV/AIDS. These include the Global Fund to Fight AIDS, Tuberculosis and Malaria, the International AIDS Society, Robert Carr Network, PEPFAR, Kaiser Family Foundation, UNAIDS and their 11 co-sponsoring UN agencies, just to name a few.

The question is: What is the level of involvement of Indigenous Peoples in the decision making processes of the global response to HIV/AIDS?

Globally, we know that the impact of HIV/AIDS is deadly among socially and economically marginalized groups. Yet little or no study has been conducted on factors driving rising rates of HIV/AIDS among many of these groups. The global failure to equitably involve Indigenous Peoples in the decision-making processes of the HIV response may be responsible for the disproportionate impact of HIV/AIDS among some of the world’s poorest and most vulnerable populations.

The UN Permanent Forum on Indigenous Issues acknowledges that Indigenous peoples have a wide range of worldviews, beliefs, habits, spiritual and healing cultural practices dating back to many thousands of years. While, it is crucial to respect and value Indigenous cultures, most experts, including many who are indigenous, acknowledge that not all cultural traditions are intrinsically beneficial. Any strategies to address harmful practices will succeed in changing behaviours only if a cultural lens is used so that change is promoted from within and owned by the community. There is also a need for culturally appropriate education and the participation of Indigenous Peoples in its design so that education is a vehicle for empowerment and not for cultural alienation.

Structural determinants, such as the ongoing effects of the colonization, occupation and militarization of Indigenous Peoples’ territories, and the persistence of hegemonic views that continue to regard Indigenous cultures as inferior, help to explain the gaps between Indigenous Peoples and the non-indigenous population. Culturally appropriate interventions cannot be designed in a vertical and top-down fashion. They require participatory processes for dialogue, consensus building and community ownership. Despite progress in setting standards, in many places program implementation has not occurred with the effective participation of Indigenous women.

UN agencies, international NGOs, funding bodies and nation states need to consult and engage with organizations representing Indigenous Peoples. Without the meaningful and equitable participation of Indigenous Peoples, the global response to HIV/AIDS will miss a golden opportunity to End AIDS as public health threat by 2030. 

Suggested research for HIV and Indigenous Peoples

  1. How well are Indigenous Peoples meeting the 95-95-95 targets; by 2025, 95% of people living with HIV will know their status; of those, 95% will get on treatment, of those, 95% will achieve an undetectable viral load.
  2. Disaggregated epidemiological data on HIV prevalence and incidence
  3. Death rates for Indigenous persons living with HIV (especially among Indigenous women, children, and key sub-populations)
  4. Rates of vertical (mother-to-child) transmission