Exclusive: North Korea claimed to be free of HIV. But infections appear to be surging

In December 2018, at an event in Pyongyang marking World AIDS Day, government officials and World Health Organization (WHO) staff celebrated an improbable feat: a corner of our planet was still untouched by HIV. North Korea had zero reported cases of HIV infection, said physician Thushara Fernando—at least to his knowledge. Fernando, who was then WHO’s representative to North Korea, chalked up that astounding success to prevention and widespread HIV testing.

In fact, North Korean health officials were quietly tracking a mushrooming AIDS threat. North Korea actually had 8362 HIV-positive individuals in 2018, estimates a report that a team of researchers from North Korea and the United States has submitted to the preprint server medRxiv. The first confirmed infection of a North Korean citizen came in January 1999, the researchers say, and infections have surged in the past few years.

“That’s an impressive takeoff,” says Chris Beyrer, an epidemiologist at Johns Hopkins University in Baltimore, Maryland, who has conducted extensive HIV/AIDS research in Asia. North Korea’s HIV prevalence “is much higher than I expected,” adds Zunyou Wu, chief epidemiologist at China’s Center for Disease Control and Prevention in Beijing.

The authors call on the international community to do more to help the country fight HIV/AIDS. And they warn that a spiraling epidemic could prompt North Korea’s government to adopt “austere measures to contain the disease,” including criminalizing HIV status and detaining or deporting people living with the virus.

The unusual collaboration took root in 2013. “Our North Korean colleagues reached out to us,” says Taehoon Kim, co-founder of DoDaum, a nonprofit in New York City that runs health and education projects in North Korea. “They first expressed concerns about HIV in rural regions and inquired whether we could do anything about this.” Aided by a common language, DoDaum’s Korean-American experts and their North Korean counterparts “developed a good rapport,” Kim says. “We started to travel to more distant parts of the country to meet with patients and understand the issues at play.”

The team learned that internal reports painted a far darker picture of HIV prevalence than was publicly known. In 2015, North Korea’s Centers for Disease Control had documented a steady uptick in infections over the previous decade. Then, in September 2018, North Korea’s National AIDS Commission finished a countrywide survey pointing to a sharp escalation in infections. The national prevalence now stands at 0.069%, the team estimates. (To arrive at that number, the authors extrapolated from infections detected in groups known to be at high and low risk.) North Korea’s HIV prevalence is low compared with many countries; the U.S. figure is about 0.6%, according to Beyrer, whereas several African countries have double-digit rates.

Still, North Korea is struggling to combat the problem. “Reliably diagnosing and treating patients remains an elusive goal,” Kim says. Only three labs nationwide use modern assays to screen for HIV. Kim says DoDaum has put about 3000 North Korean patients on combined antiretroviral (ARV) therapy. But tightened international sanctions on North Korea have made it harder to import the drugs, which are not produced domestically. These days, 30% to 40% of medications don’t clear customs at the China–North Korea border, Kim says.

Complicating treatment efforts is North Korea’s high rate of tuberculosis (TB), including multidrug-resistant strains. “People with HIV progress more quickly if they have TB,” Beyrer says. And some treatments for drug-resistant TB “are very toxic … [so] clinicians need to be able to manage those side effects,” adds report co-author Mary Smith Fawzi, an epidemiologist at Harvard Medical School in Boston. Both TB and HIV, Beyrer notes, are aggravated by malnutrition, a perpetual scourge in rural North Korea.

At first, North Korean officials asked DoDaum to keep quiet about the mounting HIV infections. But as the situation turned bleaker, DoDaum’s liaison—Kim Mun Song, a physician and external affairs director at the North Korean Ministry of Public Health in Pyongyang—felt that the team had to speak out. “On the one hand, reporting the existence of these patients may lead to a backlash from the central government, as they are very much afraid of communicable diseases in general,” Kim Mun Song told Science. “On the other hand, not reporting and not recognizing the existence will perpetuate the issue of not having treatments.”

According to North Korea’s National AIDS Commission, HIV is most common among blood donors and people who inject drugs. That pattern differs from the one seen in China’s northern provinces that border North Korea, Wu says. There, he says, men having sex with men account for 60% to 70% of HIV cases, followed by heterosexual contact. Female sex workers and their clients also have a higher prevalence in North Korea than counterparts in China, Wu notes. “We think the profile is different across the border because there is such limited cross-migration,” Smith Fawzi says.

The elevated HIV infection rates among blood donors “is very worrisome,” Beyrer says. He recalls a scandal in central China in the 1990s, when more than 37,000 blood plasma donors—mostly rural farmers—were infected with HIV. Investigators blamed for-profit outfits that pooled blood and reused contaminated equipment. Similar lapses could be occurring in North Korea, where quality assurance and safety mechanisms “are rather haphazard,” Kim Mun Song says.

The international community should launch an urgent campaign to provide ARVs to infected people in North Korea, the authors say, as well as a longer-term effort to rebuild the nation’s health system and establish academic exchanges. WHO’s office in Pyongyang could offer much-needed technical assistance, Smith Fawzi says. WHO did not respond to a request for comment.

If HIV infections continue to climb, North Korea could take draconian measures “to contain the disease at all costs,” Taehoon Kim warns. North Korean statutes permit the government to move ill people against their will or deport them, he notes. Officials “see this as a geopolitical concern that can pose a threat to the regime,” he says.

Such responses are “a realistic concern,” Kim Mun Song says. “But we hopefully will not have to take measures that violate human rights.”