In the Cusco region of Peru, a woman found out she was HIV positive while getting prenatal care for her sixth pregnancy.
The health center then tested her husband, who worked far from home as an illegal miner, and found out he was positive also. He had unwittingly transferred the virus to his wife, who proceeded to kick him out. Now he lives in the shanty towns of the illegal mines, while she raises their five children, saddled with a disease she doesn't understand.
The woman only speaks her Indigenous language of Quechua and the information about HIV is only in Spanish.
"In our Indigenous community this is a very common story," said Pilar Montalvo, a sexual/reproductive health advocate, who told the woman's story through a Spanish interpreter. "To this day she is still trying to figure out what HIV is."
And researchers are trying to paint a more complete picture of how the virus is afflicting Indigenous populations around the world. What is known is troubling — in one Canadian province, for example, 71 percent of new cases of HIV were Aboriginal people, while in Fiji, 82 percent of new infections are Indigenous people. The data and the challenges faced in the communities were laid out at a gathering that preceded this week's International AIDS Conference in Durban, South Africa, which brings people from around the world together to address the health, science, advocacy, and human rights of HIV/AIDS.
There are 36.7 million people living with HIV around the world, 1.8 million of whom are children, according to the United Nations. A new report released ahead of the conference by UNAIDS raised the alarm about "concerning trends" among adults. While the rate of new child infections has plummeted by 70 percent since 2001, among adults that decline has stalled. As estimated 1.9 million adults have acquired the infection every year for the last five years, and in some parts of the world, HIV is on the rise. Eastern Europe and central Asia saw a jump of 57 percent between 2010 and 2015, while the Caribbean saw new infections grow by 9 percent, the UN reported.
Watch the VICE News documentary, The silent rise of HIV in Chile:
Attendees of the International Indigenous Working Group on HIV/AIDS are working to have Indigenous peoples recognized as key populations in the global fight against HIV/AIDS, putting them alongside other groups considered at high risk, including men who have sex with men, people who inject drugs, prisoners, and sex workers.
High poverty, issues around drug and alcohol abuse, over-representation in prison systems, gender-based violence, domestic violence: these are the social determinants of health that bind together Indigenous peoples from around the world, said Marama Pala, an HIV positive Maori woman who works in HIV advocacy in the South Pacific. Colonialism has played an important role in creating the situations that led to those social determinants and is always part of the discussion on Indigenous health worldwide, advocates noted.
She points to Papua New Guinea, a country health professionals in the South Pacific think is worst off when it comes to HIV. About 65,000 of its 5 million people are HIV positive. With about 800 different languages spoken on PNG, it's difficult to get prevention and treatment literature, she said. Many Indigenous people from across the Pacific islands end up going to New Zealand for care, because they don't want others knowing what they are experiencing, but they struggle to figure out the system and face discrimination, she said. A 2011 report from the World Health Organization found AIDS-related illnesses to be the leading cause of death in adults at the Port Moresby hospital.
Next door in Fiji, where one in about 10,000 people are infected every year, 82 per cent of new infections are Indigenous people, according to the latest UNAIDS report on the country. About half of the population on the island is Indigenous.
According to Montalvo many Indigenous Peruvians have no access to government health services, so no HIV testing, prevention programs, counselling, or diagnostics.
"Therefore a lot of Indigenous people die without knowing why," she said.
These issues are not limited to developing countries either. The 2014 data from the Public Health Agency of Canada shows 71 percent of new cases of HIV in the interior province of Saskatchewan were Aboriginal people. In New Zealand, Pala's home, 7.5 percent of new cases are in Maori, but in the past year they have seen greater numbers, she said, especially among Maori people who inject drugs and those who are transgendered.
While this sounds problematic, it's not the entire picture. There is a lack of research around HIV in Indigenous populations, said Dr. Luis Loures, deputy executive director of UNAIDS.
"If we do not have data on Indigenous communities, you don't exist," he said.
That has become a central focus for Montalvo, who is a member of Peru's Wanka Nation.
"We are creating efforts to do research from the base of Indigenous people," she said, by ensuring there is informed consent and use of cultural practices.
The Canadian Aboriginal AIDS Network (CAAN) is a leader in community-based Indigenous research.
"Of course you know that Canada is doing very well with research, there is a lot of stuff going on with Canadian Aboriginal AIDS work," Pala said.
She added that New Zealand is a bit behind and looking to Canada to shape their work, which is why the IIWGAH conference is so important.
The final piece being addressed by the working group is stigma and discrimination, both within communities and the health system.
"I felt stigma and discrimination before I had HIV," said Pala. She isn't alone.
Research from the Indigenous Red Ribbon Storytelling Study presented at the conference showed comments from study participants who described discrimination in the health system in Saskatchewan.
Despite this, Canada is seen as a partner in the Indigenous HIV/AIDS movement. Health Minister Jane Philpott, who was a family doctor before jumping to politics, spoke during the pre-conference opening about the need for culturally appropriate diagnosis, education and treatment, even in rural and remote communities.
'I felt stigma and discrimination before I had HIV.'
"Solutions must come from those most directly affected," she said.
"This is a really important organization because they have really rallied around that fact that around the world Indigenous populations are highly vulnerable when it comes to HIV and often don't have the same kind of access to prevention, treatment, care."
The global community is one of the strengths of Indigenous people, said Pala, adding that shared culture and traditional beliefs bring them together and allow for greater networking.
"We are going to be part of the solution and part of the 90-90-90 goals to ending HIV by 2030," she said referring to the UNAIDS plan to have 90 percent of people knowing their HIV status, 90 percent of those who test positive on treatment, and 90 per cent of those on treatment with viral suppression.
"We were left out, but we've come to the point where we are not being left out and we have the opportunity to be part of the solution and turn the rhetoric into reality for Indigenous people.
"To me it means no more new infections, it means no more children being born with HIV, it means nobody dying from AIDS anymore," she said.
Follow Angela Hill on Twitter: @Angelaislost