Joti’s family refuses to touch him.

They don’t hug him or shake his hand, and when he visits relatives to eat, he brings his own plate, spoon and cup. His family won’t share utensils with him, as they fear being infected with the virus he carries, HIV. NPR agreed to only identify him by his first name to avoid further discrimination in his village for his diagnosis.

It was 9 years ago that Joti learned he was HIV positive. A 16-year-old freshman in high school, he’d recently begun sexual relations with both adolescent boys and girls. He is one of an estimated 2,500 people in Panama’s Ngäbe-Buglé indigenous territory thought to be living with HIV, which has been described by lead epidemiology researchers as an “uncontrolled epidemic” among this community and Health Ministry doctors in the country.

“HIV in the Ngäbe-Buglé territory is a bomb that’s already exploded,” says Dr. Orlando Quintero, executive director of Probidsida, a Panama City-based NGO and advocacy group for people living with HIV and AIDS.

According to Panama’s National Statistics Institute, HIV was the number one killer for people living in the Ngäbe-Buglé territory in 2022, accounting for more than 7% of all deaths in the region during the year. Among the two indigenous ethnicities in the territory — the Ngäbe and Buglé — the virus is particularly lethal for the young.

Home to just 225,000 residents and only 5% of Panama’s total population, in 2023 the territory accounted for 30% of the country’s total AIDS-related deaths among people aged 29 or younger, according to the Panama Health Ministry.

The number of infections continues to rise. In the first 10 months of 2024, there were 258 new HIV and AIDS cases detected in the Ngäbe-Buglé territory, an incidence rate nearly four times higher than the country’s urban provinces and Panama City metropolitan area, according to government figures.

What’s driving this outbreak among the Ngäbe-Buglé — in a country where HIV medication for prevention and treatment of the virus is offered for free?

Experts point to various reasons. It may be difficult to get to HIV clinics that offer antiretroviral treatment or to pay for transport to these facilities. They also note a lack of sexual education and minimal condom use within the territory.

But the primary reason? It’s the social stigma that comes with carrying the virus, says Amanda Gabster, an HIV and Sexually Transmitted Infections epidemiology researcher at the Gorgas Memorial Institute for Health Studies based in Panama City.

That stigma discourages young men and women who contract HIV from seeking medication, she says. The situation is reminiscent of the AIDS outbreak in the U.S in the 1990s, when the virus was the number one cause of death for citizens 25-44 years old.

“As the numbers show, it’s a very critical and serious situation, but we as a country haven’t properly evaluated or analyzed how to respond to it,” says Quintero. “In 2024, no one should still be dying of HIV.”

Unwelcome at home

When Joti told his family that he was HIV positive, his mother banned him from the family home and severed contact. He now lives alone, about a half mile away from his childhood home, in a small one-room shack without a bathroom built for him by his uncle.

“After I left the home, my mom threw out the chair where I used to sit and burned the plate I used to eat from,” says Joti, who is a short and slim 25-year-old, with chiseled cheek bones. “I’m no longer welcome there.”

In addition to the stigma related to HIV, Joti had sexual relationships with other men, which are common in the Ngäbe-Buglé territory though not socially accepted, according to Gabster and Dr. Cesár Gantes, a Panama Health Ministry physician who has worked with the indigenous groups since the 1990s and opened the region’s first antiretroviral clinic in 2009.

Gantes says that at his clinic near the Pacific coast town of San Félix — one of two antiretroviral clinics serving the 2,700-square-mile Ngäbe-Buglé territory in western Panama — around 90% of the new HIV cases diagnosed are among men who have sex with men.

“This creates a double stigma where you can’t be open about your sexual orientation nor the fact that you are HIV positive,” says Gantes. “Combine that with a systematic lack of condom use in the Ngäbe-Buglé territory, and you can understand how something that started small has become an epidemic.”

Joti says that after his family rejected him because he was HIV positive, he stopped taking a daily HIV pill when a town shaman encouraged him to treat the virus with traditional medicinal plants in the form of powders, tinctures and teas. Traditional medicine is a common — and free — treatment option in the Ngäbe-Buglé region, particularly in isolated villages located far from health clinics.

During the two years that Joti took traditional medicine, he lost a significant amount of weight and became so weak he was unable to walk. When a teacher at his school observed his feeble state, she offered to pay for his bus fare to travel to Gantes’s clinic to resume taking the HIV medication.

Since resuming the HIV treatment, Joti has gained weight and again feels healthy. He takes BIKTARVY, a prescription medicine used to treat HIV, once a day at 9 p.m.; the virus is no longer detectable in his blood. Every three months he travels two hours on foot and by bus to the antiretroviral clinic in San Félix to restock his HIV medication.

“What we found is that family discrimination is the strongest indicator for if you continue treatment or not” in the Ngäbe-Buglé territory, Gabster says. “If you have somebody, especially one person in your family, who helps you take your medicine, then you’re more likely to continue taking it because you feel more accepted.”

The cost of free medicine

Another major barrier that impedes Ngäbe and Buglé people from accessing HIV medication, Gabster explains, is the cost of travel.

The Ngäbe-Buglé region was the most impoverished of 13 Panama provinces and territories in 2021, according to government figures, which found that 64% of residents were living in extreme poverty. The territory consists of dense rainforest and mountainous terrain that stretches from the Caribbean coast almost across the country to the Pacific Ocean. In villages throughout the jungled region there are few options for food and limited access to electricity, toilets and potable water.

With HIV present in some of the territory’s most remote villages, infected residents must travel great distances — sometimes requiring an eight to 12-hour commute on foot, horseback or bus — to reach one of the two antiretroviral clinics in the region.

“Some people start walking at two in the morning, and with some luck — if it doesn’t rain and the rivers aren’t so swollen that they can’t cross — they can get to the clinic on time,” says Gabster.

Every three months, Ito, a tall and slender 29-year-old Ngäbe man with HIV embarks on a five-hour trek to the town of Pueblo Nuevo to pick up his antiretroviral medication. NPR is only identifying by his first name over his concerns about discrimination.

The lone boat that leaves from his village departs at 5 a.m., meaning he must wake up at 4 a.m., take the boat down a rainforest river through the mountains and then catch an hour-long bus ride along a bumpy coastal highway to the town of Pueblo Nuevo on Panama’s Caribbean coast.

Given frequent shortages in the supply of HIV medication at the clinic, Ito to get there as early as possible to improve his chances of securing pills.

The commute is both arduous and costly. The roundtrip fare from his home to the clinic is $32; Ito, a full-time university student, is unemployed and has few work opportunities in his village. In an area where the average monthly income is $40, he often turns to friends, family members and classmates for loans and donations.

Furthermore, given the region’s increased demand for antiretroviral medication, the province’s two HIV clinics often experience shortages.

“It’s expensive to be HIV positive in the Ngäbe-Buglé territory,” Gabster says. “And even if you have the money to travel to the clinic, supply of treatment isn’t always guaranteed.”

It takes a team in a village

Throughout Panama, a country of around 4.5 million people, only 16 clinics offer antiretroviral treatment, according to the Health Ministry. This lack of resources limits government health officials — such as Gantes in the Ngäbe-Buglé territory — from being able to effectively diagnose and treat HIV.

Gantes explained that once a case of HIV is detected in a village, his clinic sends a team to the site to conduct HIV tests on as many residents as possible. He said his team seeks to determine where potential “hot spots” may exist so that they can distribute preventive Pre-exposure prophylaxis (PrEP) medication and condoms to control the spread of the virus. In small towns, men often have multiple partners — both male and female — and polygamy is common.

“This allows us to flood potential infection hot spots with resources to prevent the spread of the disease,” says Gantes, whose clinic conducts 18,000 HIV tests a year and detects one new infection a day, on average. “It’s important for us to communicate that the virus is present in the town, that it can be prevented with condoms and PrEP medication, and that if detected, it can be controlled with a daily pill.”

“The more we increase our testing levels, the quicker we’ll be able to end the epidemic,” he says. “If we know where the largest concentrations of infections are located, we can educate people in that area about preventive options and inform them that if the illness is treated correctly, it is untransmittable and not lethal.”

That kind of education has had an impact on Ito.

“I know that the only thing I can’t do is stop taking the medication,” Ito says. “But if I don’t have the resources to pay for the trip to the clinic, how am I going to get there? There’s no other choice but to abandon treatment.”

Adam D. Williams, based in Mexico City, is an investigative journalist and correspondent who has covered Latin America for more than 15 years. You can view his work at adamdwilliams.com.

Reporting for this story was supported by the International Center for Journalists (ICFJ) Health Innovation Fellowship.

News Source : https://www.opb.org/article/2025/01/11/why-indigenous-panamanians-face-an-uncontrolled-hiv-outbreak/