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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

PROGRESS?

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

Written by:

  • G. Akhila, India Leader for the International Indigenous Working Group on HIV & AIDS (IIWGHA) and ITDS NGO Polavaram, West Godavari District
  • Pandi.Rameshbabu, Doctoral Fellow, Department of Social Work and Sociology, Acharya Nagarjuna University. Nagarjuna Nagar. Guntur, Andhra Pradesh

Keywords: Forest Rights Act, Tribal lands, NGO Advocacy, India.

In this article, the writer tries to help readers understand the issues contained within the Forest Rights Act (FRA) and how it influenced development. It also describes the role of civil society, NGOs and government officials in creating awareness of the FRA process as it relates to eligible Tribal beneficiaries including those affected by HIV and AIDS, supporting their welfare in Andhra Pradesh.

Indigenous peoples (Tribals) in India are popularly known as Adivasis implying ‘aboriginals’ or ‘original inhabitants’. The Indian government refers to them as the Scheduled Tribes (STs) as outlined in the country’s constitution. Most of the Tribal communities have been dwelling in forests for centuries. Traditionally, forests have provided most of their foods, medicinal products, firewood, fodder and other needs. In the long process of history, forest areas have become state property as well as the source of raising revenue from timber and other forest resources to the successive governments since the colonial period.

Since independence, these policies have led to deforestation through the transformation of forests into agricultural lands. This has also resulted in the loss of livelihoods and displacement of various Tribal societies and communities. Commercial exploitation at the hands of outsiders, and degradation of forests and other natural resources have caused imbalances to ecological and sustainable environments.

For 15 years, the Integrated Tribal Development Society (ITDS) has been networking collectively with likeminded tribal organizations in Andhra Pradesh and advocating for tribal rights, land rights, tribal women rights, and tribal displacement rights. The ITDS was founded in 1998 by Sri G. Anil Kumar, a member of the Koya Tribe. He is described as an educated Tribal social activist who serves “scheduled Tribal people”. Specifically, he has done work with the economically and educationally deprived people of the West Godavari Tribal Agency Area in the State of Andhra Pradesh.

The ITDS has been conducting 60 village-level orientation workshops on FRA land rights in 15 Tribal villages in West Godavari. The tribal people who attended became aware of the FRA and learned how to advocate with forest officers and revenue officers to obtain FRA land titles. They also learned about the Right to Information Act (RTI Act) and how to use it for gaining FRA land titles. It total, 1500 Tribal women and men attended the workshops. Of these, 15 women identified as being infected or affected with tuberculosis and 16 female attendees identified as affected by HIV and AIDS.

Advocacy with Government officers and ministers

The ITDS has facilitated advocacy discussions regarding the plan approval process of lands for Tribal families and Tribal women living with HIV and AIDS. Advocacy actions include postcard campaigns aimed at political leaders, the Prime Minister, Ministry of Tribal Welfare, the President of India and others in the Government. State Governors were also targeted. Four Advocacy meetings were also held with the District Collector, the Project Officer for Information Technology Development Agency (ITDA), the Revenue Divisional Officer, Jangareddy Gudem and Mandal Revenue Officers.

The Right to Information Act Application Submissions

As a result of village-level meetings and meetings focused specifically on awareness and advocacy of the RTI Act, eight (8) applications under the Right to Information Act were submitted. The applications asked why the government did not sanction lands to eligible Tribal women, including to eligible Tribal families affected by HIV and AIDS. The Tribal women applied to through the Project Officer of the ITDA, the Revenue Divisional Officer Jangareddy Gudem and Concern Mandal Revenue Officers.

Due to this advocacy and the applications through the RTI Act, government officers replied to the applicants’ concerns and ensured that the applications were forwarded to the Concern Officers. Ultimately, the land survey was undertaken and the process for FRA land titles distribution was engaged.

Within a short time period the Government of India completed the process of sanctioning and distributing lands to Tribal people through the implementation of the Forest Rights Act. 5% of the lands allocated to the applicants in this article now belong to Tribal women affected by TB, HIV and AIDS. This shows that by upholding Tribal (Indigenous) rights, that tribal women and men living with and affected by TB, HIV and AIDS also benefit in Andhra Pradesh and throughout India.

2016 UN General Assembly Special Session High-Level Meeting on Ending AIDS, New York City

2016 UN General Assembly Special Session High-Level Meeting on Ending AIDS, New York City

What would the world look like if we could end AIDS as a public health threat by 2030?

What would it take? This is the issue that United Nations Member States debated in the General Assembly earlier this month in New York from June 8 to 10, 2021.

Just two weeks ago at the UN General Assembly Special Session during the High-Level Meeting on ending AIDS (HLM), UN Member States adopted the 2021 Political Declaration Ending inequalities and getting on track to end AIDS by 2030. The HLM consisted of plenary sessions and thematic panel discussions. The opening plenary meeting featured statements by the President of the General Assembly, the UN Secretary-General, the Executive Director of UNAIDS, and people openly living with HIV.

However, in a report of the Secretary-General, António Guterres, he states that, “Six years after the General Assembly set an ambitious global goal to end AIDS by 2030, momentum is being lost.”

Indigenous Peoples couldn’t agree more.

Throughout four decades living with HIV, Indigenous Peoples of the world have been left behind. We have never been silent, but who has heard our call for a coordinated global response to HIV with Indigenous Peoples, particularly one that is uniquely designed and centered on the Indigenous world view and understanding of life? Indigenous Peoples predicted that without a specific push to work with us, we would be the 10-10-10 left behind from the effort to achieve the 90-90-90 goals by 2020.

Indigenous Peoples advocated successfully to gain inclusion on the Multi-stakeholder Task Force (MSTF), made up of 16 members representing civil society and the private sector, to facilitate civil society involvement in the HLM. An Indigenous person also was included in the Advisory Group to the Task Force to support the Multi-stakeholder Task Force. And still, Indigenous Peoples were only mentioned twice, and briefly at that, in the Political Declaration.

 UNAIDS, many experts, and countless activists have said that the world already has all the tools and knowledge needed to end AIDS. The missing ingredient is political will.

There were intense negotiations between UN Member States on several divisive issues. Sexual Orientation, Gender Identity and Expression (SOGIE), Sexual and Reproductive Health and Rights (SRHR) and Comprehensive Sexuality Education (CSE) were very contentious issues. At the end of the negotiations, none of this wording made it into the final text.

Using TRIPS flexibilities (of the World Trade Organization (WTO) Agreement on Trade-Related Aspects of Intellectual Property Rights (TRIPS)) to increase access to HIV treatment was also very contentious. Resource rich nations where many pharmaceutical companies are based do not want to allow lower income countries to be able to produce generic antiretrovirals using their formulas and techniques that are still under patent protection.

While the 2021 Political Declaration builds on the one from 2016, we need more progressive actions to end AIDS as a public health threat by 2030. Indigenous Peoples will continue to insist that there is a seat at the table for their issues but much more needs to be done.

What is really needed is the creation of regional Indigenous HIV and AIDS working groups of experts. These regional working groups across the globe would provide oversight, guidance, and assistance on establishing epidemiologic baselines to inform global, regional, and country-level goals and targets. There must be robust commitment and accountability mechanisms to ensure that Indigenous Peoples do not continue to be left behind. Where are the allies fighting alongside Indigenous Peoples to create an equitable evidence-based response to HIV?