Can KJ Seung Change How the World Treats Tuberculosis?
When he heard rumors of an outbreak in North Korea, Seung didn’t hesitate to visit. In 2009, he met with a man named Stephen Linton, who had founded the Eugene Bell Foundation, one of the few American organizations that conduct humanitarian work in North Korea. In the late 1990s, Linton told Seung, he’d begun bringing TB drugs and medical supplies to the country. The drugs worked for a while, but as the years went by, several North Korean doctors told him that more and more patients were not responding to them. Linton knew that drug-resistant TB was a different monster, and he didn’t have the medical expertise to build a program that could treat it.
To the average American, North Korea is a caricature: a snippy little totalitarian fiefdom ruled by a succession of despots who despise the West and are best known for displays of over-the-top military pageantry, deadly political infighting, and subjecting their citizens to torture, starvation, and forced labor. Seung saw something else. “It’s a poor country,” he says. “It has a lot of serious health problems.”
Seung’s father, T.K., had left the country in 1947, just after World War II, at a time when the territory north of the 38th Parallel was under the Soviet Union’s sphere of influence. A few years after T.K. Seung fled, the Korean War erupted. The United States essentially bombed the North back to the Stone Age, dropping 635,000 pounds of explosives on the country. Reconstruction and reconciliation efforts have been few and far between.
Delivering aid to North Korea in this day and age is tricky, and Seung’s work is hampered by sanctions and strict regulations from the U.S. government. He has been told that providing aid to everyday North Koreans is, in essence, helping to prop up the country’s ruthless regime. What most angers Seung is that Americans’ perception of North Korea’s dictators seems to override our compassion for the country’s citizens. Everyone he meets, Seung says, has the same saber-rattling perception of North Korea depicted on CNN and Fox News. “I can tell you that 99 percent of it is total bullshit,” he insists. “When they get sick with a deadly disease, that’s devastating for them just like it would be for you.”
Seung was horrified by what he saw on his first trips to North Korea. And not by the hand of a maniacal dictator: What terrified him was the handiwork of the WHO. “The biggest ‘oh shit’ moment was realizing that the North Korean patients were getting treated over and over again with first-line drugs just like I saw in Peru 10 years before,” Seung recalls. “It really was a weird feeling of déjà vu.” Medicine had advanced significantly, but it was as if the WHO’s policy was stuck in a time warp. “The other déjà vu thing,” he says, “was WHO screwing it up in exactly the same way as in Peru. It was like 10 years of fighting with WHO…hadn’t happened. WHO was ignoring 10 years of new diagnostics and policy changes.”
Despite its reputation as a rogue nation, North Korea has played strictly by the WHO playbook when it comes to treating TB. If anything, the country’s leaders had followed the international community’s lead to a fault, and now their people were paying dearly. Millions of dollars in aid had been allocated to fight tuberculosis in North Korea, but Seung saw only a pittance of it go toward combating drug-resistant strains. Instead, under the direction of the WHO, a flawed strategy had once again been put in place, as doctors gave patients the same drugs over and over again without ever testing to see if their illness was resistant. It was like throwing fuel on a wildfire.
Since Seung began working with the Eugene Bell Foundation, the nonprofit has funded care for more than 3,000 multidrug-resistant TB patients—almost six times the number of patients treated by WHO-backed efforts, Seung says. He successfully treats more than 70 percent of his patients. The global rate is less than 50 percent.
Still, Seung continues to meet North Korean patients who’ve been through multiple rounds of first-line drugs and have never been tested for drug resistance. Even though the country finally built its own lab to analyze sputum for drug resistance, North Korea is still hampered by the WHO’s protocol of requiring patients to take potentially useless first-line drugs for six months before even conducting drug-susceptibility tests.
When contacted for comment, the WHO said it is actively promoting universal access to drug-susceptibility testing, but that the goal has not been realized in many member states, including North Korea. “It requires commitment and financing,” the group said. It’s the same thing Seung heard in Peru, and he says he doesn’t have time to waste waiting on the powers that be to get their act together.
Rather than continue to fight over policies that have long ago been proven shortsighted, Seung made a dramatic pivot in recent months by bringing groundbreaking treatments to North Korea, and to more than a dozen other countries where drug-resistant TB kills.
It’s been nearly 50 years since a single new medication for tuberculosis has been developed. In 2012, though, a glimmer of hope finally flickered when the FDA approved a drug called bedaquiline—the first medication ever approved specifically for multidrug-resistant TB. The following year, the European Medicines Agency gave the green light to another drug called delamanid. It was a medical victory, but with a catch: The drugs are not getting to the countries awash in multidrug-resistant TB. In three years, bedaquiline has reached fewer than 5,000 patients, and delamanid has reached virtually no one outside of clinical trials.
In June 2014, Seung and some of the same colleagues he worked with in Peru won a $60 million grant to deliver these new drugs to patients and study how they work. Called EndTB, the program is a radically ambitious undertaking that spans three organizations—Partners in Health, Doctors Without Borders, and Interactive Research & Development—in 15 countries, including North Korea.
With two fresh drugs in play, Seung is confident he can help develop a regimen that is capable of curing multidrug-resistant TB in as little as a year, and is far less toxic to patients. But given the threats that third-world political instability can pose to medical initiatives, not everyone involved in the project was keen on including North Korea. Not surprisingly, Seung insisted.
When he thinks about the new drugs, he is reminded of a young woman he met at a TB sanatorium in Pyongyang. Pretty and in her early twenties, she was sick with a particularly challenging strain of drug-resistant TB. She told Seung that her younger brother was also ill and asked if Seung could help him.
A few days later, the brother arrived. “He looked like he was about to die,” Seung recalls. They sat outside in the crisp air and talked. The young man told Seung that his parents had died a few years back from the same illness that now afflicted him and his sister. There was little doubt in Seung’s mind that the whole family had been hit by the same lethal strain, just as he had seen too many times in Peru. After a few minutes, Seung assured the young man that he’d start him on treatment by the end of day. The young man’s gratitude was piercing. He couldn’t stand the thought of losing his sister, or vice versa. “She’s the only person that I have left,” he told Seung in Korean. “And I’m the only person she has left.”
As promised, the nurses collected the young man’s sputum, ran the tests, and a few hours later, Seung secured him the necessary drugs. When Seung returned six months later, though, the young man was dead and his sister wasn’t getting better. Despite the extraordinary effort to find a treatment regimen that would stop her killer in its tracks, nothing worked. There were no new drugs to add to the cocktail, no more options to pursue. All that was left for her to do was await the same painful fate that had consumed her father, mother, and brother.
“[They] are why we included North Korea in the project,” Seung says.