Indigenous people with HIV ‘invisible’ in Latin America

Indigenous communities in Latin America say they are being excluded from the global HIV/AIDS response, leaving them without access to life-saving medicines and prevention tools.

The Latin America region as a whole is grappling with an increasing number of new HIV infections according to UNAIDS, amid dwindling funding to tackle the disease.

Indigenous people affected by HIV say they feel “invisible” as there is no data on the prevalence of the virus in their communities and they can’t access medicines for HIV treatment or prevention.

Community leaders have written to the International AIDS Society (IAS) demanding “permanent representation” within the organization, where they say they currently have no representation.

“Current epidemiological data does not do justice to us since we are considered part of the general population, which makes us invisible and makes our realities invisible,” said Fernando Chujutalli Córdova, an HIV activist from Peru, at an HIV conference in Lima last week.

“Without our voices, we remain invisible, silenced, and trapped in profound inequality.”

Already facing challenges including racism, stigma, and discrimination, affected communities are calling for targeted interventions to ensure their survival.

Citing a statement by a coalition representing indigenous people with HIV/AIDS, Córdova said institutions were failing to address the needs of indigenous communities in the HIV response, putting them at risk of “extinction.”

Without including them, the region will fail to reach the global 95-95-95 goals to combat HIV/AIDS, added Córdova, explaining that “Latin America cannot achieve the final five percent because we assume that those are the indigenous people without access.”

The targets aim for 95% of people with HIV to know their status, 95% of those diagnosed to be on consistent treatment, and 95% of those receiving antiretroviral therapy to have their virus levels suppressed by 2025.

Failure to stick to HIV treatment regimens can be a problem. But Williams Morales, an activist from Chile who is living with HIV, says incorporating traditional ancestral knowledge and medicines into HIV prevention and treatment could improve adherence.

HIV ‘hypocrisy’

Morales pointed out what he sees as “hypocrisy” in the current approach to HIV prevention, saying there are gaps between promises and real, inclusive progress.

“We have seen the hypocrisy in HIV prevention,” said Morales, speaking through an interpreter.

“Our communities, especially traditional birth attendants who attend to nearly 40% of births and are highly respected, are excluded from the HIV response simply because they cannot read or write.”

According to a report by UNAIDS, the numbers of AIDS-related deaths has decreased globally by 28% since 2010, but there has been an increase among women in Costa Rica, El Salvador, Mexico, Panama, Paraguay and Peru.

Some countries, such as Brazil and Guatemala, have seen a high prevalence of HIV among afro-descendant and indigenous populations. In Brazil, HIV prevalence among afro-descendant women is twice as high as in the overall female population, according to the report.

High HIV prevalence (above 5%) was also reported among indigenous communities in Venezuela, Peru and Colombia, with geographical and linguistic barriers among the factors affecting access to services.

The International AIDS Society’s fifth HIV Research for Prevention conference was held for the first time in Lima, creating an opportunity to highlight HIV prevention challenges in the Latin America region.

Beatriz Grinsztejn, president of the International AIDS Society (IAS) said she hoped it would help draw attention to the urgent need to scale up HIV prevention across Latin America.

“Ours is one of the only regions in the world where HIV is on the rise,” said Grinsztejn.

“It’s alarming that new HIV acquisitions in Latin America increased between 2010 and 2023 despite the advent of powerful new prevention tools like PrEP [Pre-Exposure Prophylaxis, a medicine to prevent HIV].”

On the question of representation of indigenous communities, the IAS said it was committed to elevating indigenous voices within its programming.

“We have made significant efforts to promote indigenous peoples through various initiatives,” a spokesperson said, citing a number of conference events.

Funding shortfall

Seen as too wealthy to receive donor funding, the Latin American region is grappling with a shortage of resources to address its HIV epidemic, which is on the rise.

“My region has a challenge,” said Brenda Crabtree-Ramírez, a senior researcher at the HIV clinic of the Department of Infectious Diseases at the National Institute of Health Sciences and Nutrition, Salvador Zubiran.

“We don’t have the high burden of disease or incidence as other regions, so we are not seen … We are not poor enough to be funded, but we are also not rich enough to fund HIV to hit the goals.”

As well as an increase in HIV, mortality rates from advanced HIV disease are increasingly high, especially among women, she added.

Around 100,000 people in Brazil currently use oral PrEP, while the country is in negotiations to procure CAB-LA—an injectable form of PrEP—according to Artur Kalichman, deputy director of the department for HIV and sexually transmitted infections at Brazil’s Ministry of Health

However, he told SciDev.Net that the price initially proposed in negotiations for injectable PrEP was 14 times higher than the price for oral PrEP, adding: “It’s very hard to maintain sustainability in a situation like that without help.”

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