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HISTORY OF GLOBAL INDIGENOUS RESPONSE TO HIV
For over three decades, Indigenous Peoples around the world have been on a path leading towards the forming of an International Indigenous Working Group on HIV and AIDS (IIWGHA) and the International Indigenous HIV & AIDS Community (IIHAC).
Early collective action began during the International AIDS Conference in Montreal, Canada in 1989. The initial leadership was provided by the National Native American AIDS Prevention Center (NNAAPC) in the United States, and by Te Roopu Tautoko Trust in Aotearoa, New Zealand. The first International Indigenous AIDS Conference was hosted in Auckland, New Zealand, in 1991 by Te Roopu Tautoko Trust. The following year, an informal, ad-hoc meeting of International Indigenous Peoples met during the 8th International AIDS Conference in Amsterdam, Holland in 1992. In 1993, they met again at the annual International AIDS Conference located in Berlin, Germany. The Indigenous peoples who gathered at the early meetings listed above were considered an ad-hoc group, although they were determined to meet at every International AIDS Conference.
In 2005, the International Indigenous Peoples Satellite Planning Committee was formed to plan the next year’s Indigenous Satellite conference. By 2006, the working group called themselves the International Indigenous HIV/AIDS Secretariat (IIHAS) and hosted an Indigenous Satellite at International AIDS Conference in Toronto, Canada (AIDS 2006). The intent was that the IIHAS would continue collective action on recommendations and priorities developed by over 300 participants, most notably the Toronto Charter: An Indigenous Peoples’ Action Plan on HIV/AIDS.
In 2008, the group met again at the Pre-conference of Indigenous and Afro-Descendent People at the International AIDS Conference in Mexico City, Mexico, which was particularly relevant for the region of Latin America and the Caribbean. It showed the response by our peoples to HIV and AIDS and the crosscutting themes of sexuality and human rights. Finally, there was a unification of the agendas of Indigenous and Afro-descendant peoples in the face of racism and all forms of discrimination.
In July of 2010, the IIWGHA met and conducted strategic planning during the Indigenous Satellite at International AIDS Conference in Vienna, Austria. Since finalizing the International Indigenous Strategic Plan on HIV and AIDS for Indigenous Peoples and Communities from 2011-2017, IIWGHA has hosted an Indigenous Peoples Networking Zone in the Global Village of International AIDS conferences and International Indigenous Pre-conferences in the USA (AIDS 2012), Australia (AIDS 2014), South Africa (AIDS 2016), the Netherlands (AIDS 2018) and a virtual conference out of the USA (AIDS 2020: Virtual).
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.
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
- 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.
- Disaggregated epidemiological data on HIV prevalence and incidence
- Death rates for Indigenous persons living with HIV (especially among Indigenous women, children, and key sub-populations)
- Rates of vertical (mother-to-child) transmission
Reclaiming Tribal Forests in India
- 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.
Indigenous Reflections on the High-Level Meeting on Ending AIDS
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?
Covid-19 and the world of work: A focus on people living with HIV
Part of the ILO series on leaving no one behind in COVID-19 and the world of work, this brief describes the impact of the pandemic on people living with HIV and makes recommendations for a COVID-19 response and recovery in the world of work that is inclusive of people living with HIV.
Indigenous Activists interrupt IAS 2019 to list their demands
July 22, 2019 – Mexico City, IAS 2019
Indigenous Activists interrupt IAS 2019 opening to list their demands.
La Journada: Sociedad y Justicica
Reflections on National Native HIV/AIDS Awareness Day: Examining Inequities in the Global Response to HIV/AIDS
By Trevor Stratton, Coordinator for the International Indigenous Working Group on HIV & AIDS for the Canadian Aboriginal AIDS Network
Growing up as a member of the Mississaugas of the Credit First Nation near Toronto, Canada, I was a first-hand witness to how the disparities in HIV/AIDS health care impact Indigenous communities. My story, unfortunately, was not an uncommon one: I learned in 1990 that I was HIV positive, and years later that it had progressed to AIDS. I was forced to face my own fears and stigma associated with acquiring HIV during the height of the epidemic. Thankfully, through the support of the Canadian Aboriginal AIDS Network (CAAN), I realized that I didn’t need to confront this journey alone and I could still live a normal, healthy and purposeful life. That’s when I decided to take action and join forces with CAAN to provide support to others living with HIV/AIDS and advocate for equitable and culturally-sensitive care for this resilient yet underserved population.
When population size is taken into account, the Indigenous population ranks fourth in the US, among ethnicities, in rates of HIV/AIDS. To understand the complexities associated with HIV in the Indigenous population, it’s necessary to consider the Indigenous Peoples’ long history of mistrust towards health and social services stemming from colonialism, displacement, systemic violence and racism, which continue to this day. With about 560 federally-recognized Indigenous tribes who speak more than 170 languages, cultural diversity presents a challenge in HIV prevention. Continued downward pressure on the determinants of Indigenous health has resulted in poverty, multi-generational trauma and high rates of alcohol and drug use contributing to the prevalent rates of HIV in our communities. Aggravating the problem, stigma and racism continue to restrict Indigenous Peoples’ essential access to culturally-appropriate treatment, care and support.
I am proud to be a member of the Conference Coordinating Committee for the 23rd International AIDS Conference (AIDS 2020), enabling the voice of diverse Indigenous communities to be heard. AIDS 2020 is the largest gathering in the world for HIV/AIDS professionals and will take place in San Francisco and Oakland in July 2020.
Indigenous healthcare needs to be front and center in the national conversation, yet to this day it remains painfully ignored. The conference represents an opportunity to stand together with the Indigenous Peoples as a community in the fight against the epidemic. There, we will address the obstacles to reducing HIV disparities and enhancing the health and well-being of Indigenous Peoples. We will explore ways to improve access to HIV services, provide comprehensive prevention information and resources and offer health care services delivered by members of the Indigenous community. We will work to prioritize the accurate representation of Indigenous Peoples in epidemiological data and clinical research. At the core of the HIV response is the right to healthcare for every person, including our Indigenous communities.
All narratives, expertise and experiences must be considered as we move closer to zero new HIV/AIDS cases and ultimately, a cure. In fact, AIDS 2020 is being held on sacred Indigenous lands. During the conference we will welcome delegates to a ceremony honouring the land, an added opportunity to shine a bright light on the Indigenous experience with HIV/AIDS and our role in ending the epidemic. We know how far we have come, and after AIDS 2020, we will have a better understanding of where we still need to go.
UNAIDS Statement, April 25, 2019
18th session of the United Nations Permanent Forum on lndigenous lssues
Agenda item 3: Follow-up to the recommendations of the Permanent Forum
The Joint United Nations Programme on HIV/AIDS (UNAIDS) would like to take this opportunity to express our support to the Forum as an important venue for the promotion of dialogue between governments, indigenous peoples and the UN system.
While incomplete, available data show that the health and wellbeing of Indigenous Peoples across the globe is substantially poorer than that of the general population. , Despite their strength and resilience, Indigenous Peoples are disproportionately impacted by a range of health issues, including poor sexual and reproductive health (SRH), HIV/AIDS and viral hepatitis outcomes. Access to services, and knowledge and uptake of services, remains poor.
At its sixteenth session, the UN Permanent Forum on Indigenous Issues recommended that “…UNAIDS, in collaboration with the United Nations Population Fund (UNFPA) and the Inter-Agency Support Group on Indigenous Peoples’ Issues, sponsor an expert group meeting on HIV/AIDS by 2019, which would include the full and effective participation of indigenous peoples living with and affected by HIV/AIDS, to analyse the sociocultural and economic determinants of health for HIV/AIDS prevention, care and treatment in indigenous communities, with the Forum’s collaboration, in order to ensure the realization of target 3.3 of the Sustainable Development Goals.” Last year, the Forum expressed appreciation for the steps taken by UNAIDS, UNFPA and IASG and called on Member States and UN entities to contribute to the workshop.
Over the past year, UNAIDS and UNFPA, in consultation with leaders from the International Indigenous HIV/AIDS Community and the Inter-agency Support Group, have developed an approach to fast-track the rights of Indigenous peoples to access integrated SRH / HIV services as part of national AIDS and development programmes.
This approach favours a process in countries to support development of national and local programmes to better address the sexual and reproductive health and rights (SRHR) of Indigenous Peoples. With the support of stakeholders, we hope to begin this year a series of national dialogues focusing on Indigenous Peoples’ SRHR / HIV. The aim is to work with Indigenous Peoples to identify people-centred approaches for holistically addressing priority SRH and HIV issues within local indigenous communities. Once defined, these approaches will be promoted for inclusion within National AIDS Programmes and broader, national health and strategic plans, for rollout within Indigenous communities.
This approach calls for full Indigenous community consultation, partnership, engagement and ownership of Indigenous health programme enhancements. Broader partnerships are also needed between UN agencies and the Interagency Support Group on Indigenous Peoples’ Issues, member states – including National AIDS Programmes, Ministries of Health, Indigenous Affairs and other relevant entities, civil society organisations representing Indigenous Peoples, including those living with HIV, women and youth and advocating for their SRHR, and other development partners.
We call on interested Member States and UN entities to join us in preparing for these national dialogues to help fast-track the rights of Indigenous peoples to access integrated sexual and reproductive health / HIV services as part of national AIDS and development programmes.