Immunizations

Why Are So Many Indigenous Panamanians Contracting HIV — And Dying Of AIDS?

Joti, a young man who lives in Panama's Ngäbe-Buglé territory, was diagnosed with HIV nine years ago. When he told his family, his mother banned him from the family home out of an unfounded fear that his very presence would put others at risk of infection. He asked that he be identified only by his first name to avoid further discrimination in his village for his diagnosis Adam Williams for NPR hide caption

toggle caption Adam Williams for NPR

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 nine 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.

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"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 No. 1 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 age 29 or younger, according to the Panama Health Ministry.

Dr. Orlando Quintero, in his office in Panama City, points to an chart. The blue that shows how HIV symptoms cease with treatment. He's the executive director of Probidsida, an advocacy group for people living with HIV and AIDS. Quintero himself was diagnosed with HIV in 1987 and was inspired to start this group in 1998 because of difficulties he faced in getting the medicines he needed. Adam Williams for NPR hide caption

toggle caption Adam Williams for NPR

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.

People wait in line at the San Felix HIV clinic, near the Pacific Coast. The clinic offers both diagnosis and treatment for HIV. Many of those who come are from the Indigenous community. Adam Williams for NPR hide caption

toggle caption Adam Williams for NPR

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 No. 1 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 cheekbones. "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.

Dr. Cesár Gantes, a Panama Health Ministry physician who has worked with the Indigenous groups since the 1990s, meets with a patient. He is the founder of a clinic that provides antiretroviral medications. Adam Williams for NPR hide caption

toggle caption Adam Williams for NPR

"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."

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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' 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.

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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.

A typical home in the Ngabe Bugie territory, located in a town called Kuerima. According to government figures, nearly two-thirds of residents in the province live in extreme poverty. Adam Williams for NPR hide caption

toggle caption Adam Williams for NPR

"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 him 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 hourlong 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 needs 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.

For people in the Indigenous Ngäbe-Buglé community, a boat ride is typically part of the trek to get from their village to the nearest HIV clinic. Adam Williams for NPR hide caption

toggle caption Adam Williams for NPR

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."

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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.

Children from the Ngabe community in the village of Kuerima. The girl is carrying water to her home. Adam Williams for NPR hide caption

toggle caption Adam Williams for NPR

"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."

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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.

Fiji HIV Outbreak: Too Early To Tell Of Impact On NZ, Charity Says

Lucy Xia

It is too early to tell what impact the current HIV outbreak in Fiji may have on New Zealand, a charity at the forefront of New Zealand's response to the virus says.

Fiji has recorded 1093 new HIV cases from the period of January to September 2024, and Fiji's minister for health and medical services has declared an official outbreak.

The United Nations programme on HIV/AIDS (UNAIDS) said there were three times as many cases between January and September as there were in the same period in 2023.

Preliminary Ministry of Health numbers showed that among the newly diagnosed individuals receiving antiretroviral therapy, half contracted HIV through injecting drugs, it said.

The rise in infections in Fiji "put the entire Pacific region at risk", UNAID's director in Asia Pacific Eamonn Murphy said.

The Burnett Foundation, formerly the New Zealand AIDS Foundation, said the outbreak in Fiji was still new and it was unclear to what extent sexual transmission was contributing to the outbreak.

"It is too early to tell what the impact will be here in Aotearoa," the foundation's interim general manager Alex Anderson said.

It was likely that sex between men was playing a role, Anderson said, but he believed that stigma about sex between men was affecting the reporting of such cases.

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"We hope more data on modes of transmission will be available soon, and we will continue to monitor the situation."

The Burnett Foundation would continue to ensure people in Aotearoa had good awareness of HIV and were well-protected with condoms, PrEP( an HIV prevention medication), testing, antiretroviral therapy, and free and easy access to needles, he said.

New Zealand had a strong practice of a safe supply of needles and a needle exchange programme, he said. People who used drugs accounted for very few HIV infections in New Zealand, thanks to that programme.

Anderson said the current outbreak in Fiji also highlighted the need for temporary migrants in New Zealand to have funded access to PrEP.

"We know that there are strong migrant connections between Fiji and Aotearoa New Zealand."

Temporary migrants are not currently eligible for funded PrEP in New Zealand, and need to pay for it along with the necessary lab tests.

Anderson also called for the New Zealand government to support Fiji through the outbreak, "to ensure good access to prevention, testing and Antiretroviral therapy for people living with HIV and the establishment of a needle exchange programme".

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Syringe Exchange Fears Hobble Fight Against West Virginia HIV Outbreak

More than three years have passed since federal health officials arrived in central Appalachia to assess an alarming outbreak of HIV spread mostly between people who inject opioids or methamphetamine.

Infectious disease experts from the Centers for Disease Control and Prevention made a list of recommendations following their visit, including one to launch syringe service programs to stop the spread at its source. But those who've spent years striving to protect people who use drugs from overdose and illness say the situation likely hasn't improved, in part because of politicians who contend that such programs encourage illegal drug use.

Joe Solomon is a Charleston City Council member and co-director of SOAR WV, a group that works to address the health needs of people who use drugs. He's proud of how his close-knit community has risen to this challenge but frustrated with the restraints on its efforts.

"You see a city and a county willing to get to work at a scale that's bigger than ever before," Solomon said, "but we still have one hand tied behind our back."

The hand he references is easier access to clean syringes.

In April 2021, the CDC came to Charleston — the seat of Kanawha County and the state capital, tucked into the confluence of the Kanawha and Elk rivers — to investigate dozens of newly detected HIV infections. The CDC's HIV intervention chief called it "the most concerning HIV outbreak in the United States" and warned that the number of reported diagnoses could be just "the tip of the iceberg."

Now, despite attention and resources directed toward the outbreak, researchers and health workers say HIV continues to spread. In large part, they say, the outbreak lingers because of restrictions state and local policymakers have placed on syringe exchange efforts.

Research indicates that syringe service programs are associated with an estimated 50% reduction in HIV and hepatitis C, and the CDC issued recommendations to steer a response to the outbreak that emphasized the need for improved access to those services.

That advice has thus far gone unheeded by local officials.

In late 2015, the Kanawha-Charleston Health Department launched a syringe service program but shuttered it in 2018 under pressure, with then-Mayor Danny Jones calling it a "mini-mall for junkies and drug dealers."

SOAR stepped in, hosting health fairs at which it distributed naloxone, an opioid overdose reversal drug; offered treatment and referrals; provided HIV testing; and exchanged clean syringes for used ones.

But in April 2021, the state legislature passed a bill limiting the number of syringes people could exchange and made it mandatory to present a West Virginia ID. The Charleston City Council subsequently added guidelines of its own, including requiring individual labeling of syringes.

As a result of these restrictions, SOAR ceased exchanging syringes. West Virginia Health Right now operates an exchange program in the city under the restrictions.

Robin Pollini is a West Virginia University epidemiologist who conducts community-based research on injection drug use. "Anyone I've talked to who's used that program only used it once," she said. "And the numbers they report to the state bear that out."

A syringe exchange run by the health department in nearby Cabell County — home to Huntington, the state's largest city after Charleston — isn't so constrained. As Solomon notes, that program exchanges more than 200 syringes for every one exchanged in Kanawha.

A common complaint about syringe programs is that they result in discarded syringes in public spaces. Jan Rader, director of Huntington's Mayor's Office of Public Health and Drug Control Policy, is regularly out on the streets and said she seldom encounters discarded syringes, pointing out that it's necessary to exchange a used syringe for a new one.

In August 2023, the Charleston City Council voted down a proposal from the Women's Health Center of West Virginia to operate a syringe exchange in the city's West Side community, with opponents expressing fears of an increase in drug use and crime.

Pollini said it's difficult to estimate the number of people in West Virginia with HIV because there's no coordinated strategy for testing; all efforts are localized.

"You would think that in a state that had the worst HIV outbreak in the country," she said, "by this time we would have a statewide testing strategy."

In addition to the testing SOAR conducted in 2021 at its health fairs, there was extensive testing during the CDC's investigation. Since then, the reported number of HIV cases in Kanawha County has dropped, Pollini said, but it's difficult to know if that's the result of getting the problem under control or the result of limited testing in high-risk groups.

"My inclination is the latter," she said, "because never in history has there been an outbreak of injection-related HIV among people who use drugs that was solved without expanding syringe services programs."

"If you go out and look for infections," Pollini said, "you will find them."

Solomon and Pollini praised the ongoing outreach efforts — through riverside encampments, in abandoned houses, down county roads — of the Ryan White HIV/AIDS Program to test those at highest risk: people known to be injecting drugs.

"It's miracle-level work," Solomon said.

But Christine Teague, Ryan White Program director at the Charleston Area Medical Center, acknowledged it hasn't been enough. In addition to HIV, her concerns include the high incidence of hepatitis C and endocarditis, a life-threatening inflammation of the lining of the heart's chambers and valves, and the cost of hospital resources needed to address them.

"We've presented that data to the legislature," she said, "that it's not just HIV, it's all these other lengthy hospital admissions that, essentially, Medicaid is paying for. And nothing seems to penetrate."

Frank Annie is a researcher at CAMC specializing in cardiovascular diseases, a member of the Charleston City Council, and a proponent of syringe service programs. Research he co-authored found 462 cases of endocarditis in southern West Virginia associated with injection drug use, at a cost to federal, state, and private insurers of more than $17 million, of which less than $4 million was recovered.

Teague is further concerned for West Virginia's rural counties, most of which don't have a syringe service program.

Tasha Withrow, a harm reduction advocate in bordering rural Putnam County, said her sense is that HIV numbers aren't alarmingly high there but said that, with little testing and heightened stigma in a rural community, it's difficult to know.

In a January 2022 follow-up report, the CDC recommended increasing access to harm reduction services such as syringe service programs through expansion of mobile services, street outreach, and telehealth, using "patient-trusted" individuals, to improve the delivery of essential services to people who use drugs.

Teague would like every rural county to have a mobile unit, like the one operated by her organization, offering harm reduction supplies, medication, behavioral health care, counseling, referrals, and more. That's an expensive undertaking. She suggested opioid settlement money through the West Virginia First Foundation could pay for it.

Pollini said she hopes state and local officials allow the experts to do their jobs.

"I would like to see them allow us to follow the science and operate these programs the way they're supposed to be run, and in a broader geography," she said. "Which means that it shouldn't be a political decision; it should be a public health decision."

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

This article first appeared on KFF Health News and is republished here under a Creative Commons license.

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