Can KJ Seung Change How the World Treats Tuberculosis?

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Photograph by David Yellen

Doubt fluttered through KJ Seung’s stomach as his jet touched down in Pyongyang. It was the fall of 2010, and once again the Boston-based doctor was crossing into North Korea, the land of his father’s birth. Although Seung had been all over the world, this was different: He was now entering a country that was openly hostile to outsiders, and there was no telling what its paranoid government might do if it suspected him of making a wrong move. As he crossed the tarmac and entered the small airport terminal, he knew he was already cut off from his colleagues and, indeed, the rest of the outside world. His cell phone was useless. Email was restricted. But there was a killer on the loose, and Seung had more than a hunch that it was the same airborne assassin he had tracked in Peru and had hunted in sub-Saharan Africa: a particularly deadly form of tuberculosis.

Just the year before, Seung had heard anecdotal evidence that North Korea was being ravaged by an epidemic of multidrug-resistant tuberculosis, a highly contagious disease that tears through entire communities, jumping from person to person by way of just a cough or a sneeze. He’d begun coming to the so-called Hermit Kingdom to gather evidence, quietly building a case. To prove his hypothesis, he’d had to complete a medical Mission: Impossible: making his way through one of the world’s most closed societies, collecting samples from ailing North Koreans, and transporting them safely out of the country for analysis. And he wasn’t done yet.

It was a small miracle that he’d been allowed into the country in the first place. As one of a tiny number of TB specialists in the world—and one whose father hails from North Korea—Seung was given singular access to the poorest parts of the country. He had just two weeks to visit a handful of sites where tuberculosis victims were quarantined. These facilities ranged from hospital-like structures in the capital city to stout concrete barracks with slate roofs and walled-in yards in the rural western provinces. They lacked steady electricity and modern medical equipment, but had an abundance of bone-thin patients who had been sick for months, if not years.

Unlike quick killers such as Ebola and cholera, TB throttles its victims slowly. Mycobacterium tuberculosis, the bacterium that causes tuberculosis, stakes a claim to the lungs, then drains through the lymphatics into the blood. With each pump of the heart, the bacteria are carried into the liver, spleen, lymph nodes, and bone marrow, launching their infectious assault throughout the body. As the bacteria divide and consume the lungs, patients are forced to gasp for air in order to speak.

At each sanatorium Seung visited, the lines of withered patients were longer than he expected. If he had enough drugs for 20 deathly ill people, 40 showed up. Day in and day out, Seung was forced to play God: On his shoulders was the decision of who would have a chance to live and who was certain to perish.

If a person has a non-drug-resistant form of TB, he or she is treated with a cocktail of four “first-line” drugs. The fix isn’t a cakewalk: It takes between six and eight months, and cures approximately 85 percent of the infected. But drug-resistant TB is far, far worse: It’s cloaked in a bulletproof vest that renders the most important first-line drugs useless. In order to treat drug-resistant TB, patients must take at least five different drugs—all of which carry vicious side effects, including near-instantaneous vomiting—for two full years. The average patient who survives will have consumed 14,600 pills in treatment. Patients must also withstand eight months of daily injections with chemicals that can cause hearing loss—some patients will go totally deaf—psychiatric issues, and kidney failure. Fewer than half of the people who manage to survive this toxic slog end up cured.

When Seung began traveling to North Korea in 2009, there were no labs or equipment in the country that could test for drug resistance. Instead, patients were given a small plastic container shaped like a bullet and instructed to take a deep breath, then cough up as much mucous as they could muster from their lungs—so that scientists could analyze and pinpoint the specific strain of TB. Then Seung packed the samples into his luggage, hoping to deliver them to a lab in South Korea on his way home to Boston.

Those first visits, it turned out, were just the beginning. He would have to return again and again. All told, he managed to collect more than 200 samples. The results, Seung says, were “disturbing.” Eighty-seven percent of the suspected cases were, in fact, resistant to the first-line drugs being used. Though it had remained hidden for years, North Korea was in the throes of a full-fledged outbreak—one that the secretive country was ill equipped to fight. Untreated, it could scorch the entire Korean peninsula, and beyond.

For Seung, the discovery came with an awful pang of recognition. Unfortunately, he’d seen it all before.

 

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Portrait by David Yellen

Tuberculosis is one of the most resilient and effective killers in history—it has been taking human lives for at least 5,000 years. The bones of Egyptian mummies are riddled with telltale scars, and Hippocrates described it as the most common cause of death of his time. TB quickly spread in crowded cities such as London and Paris during the industrial age. In the 19th century—when the bacterium eviscerated literary titans such as John Keats, Stephen Crane, and the entire Brontë clan—treatment options were limited, consisting mostly of bloodletting and feeble ointments. Eventually, the disease earned nicknames such as “white plague” and “captain among these men of death”; it was best known as “consumption,” a reference to the sickly manner in which patients wasted away.

In the late 19th century, TB treatment produced its most lasting cultural artifact—the sanatorium. The concept was straightforward: a homey place tucked away in the wilderness where infected patients could eat well and relax in bed. At a time when TB was essentially killing everyone it touched, roughly 30 percent of sanatorium patients survived thanks to the healthy diet and additional rest. In the years that followed, sanatoriums sprung up in every U.S. state and around the world.

It wasn’t until 1944 that researchers announced the development of streptomycin, the first antibiotic proven to kill the bacterium that causes tuberculosis. As the age of antibiotics dawned and new TB drugs emerged, doctors proclaimed that we were on the cusp of eradicating the disease altogether. In places with the resources to identify infected patients and the ability to provide the necessary drugs, those predictions began to come true: Tuberculosis cases in the U.S. plummeted by 75 percent between the 1950s and the mid-1980s.

While treating TB was wildly successful here, a lethal phenomenon was unfolding in less-fortunate corners of the globe. From the moment scientists created drugs to fight TB, strains of the bacterium began mutating and building up resistance to the medications.

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KJ Seung reviews pharmacy records with North Korean staff. / Photograph courtesy of KJ Seung

In the late 1980s, the number of TB cases around the world exploded. In sub-Saharan Africa, the weakened immune systems of AIDS patients, and a lack of organized healthcare, opened the floodgates for TB. In the megacities of Asia and South America, outbreaks struck crowded slums. By 1993 the World Health Organization officially declared TB a global emergency. “It is out of control in many parts of the world,” said Arata Kochi, then-manager of the WHO’s TB program. It was a global wake-up call: A perfectly preventable and treatable disease was wreaking havoc, killing 9,000 people a day.

Hoping to stem the tide, the WHO introduced a standardized treatment program based on a cocktail of four drugs, and marketed it heavily to governments struggling with devastating numbers of deaths. But there was a problem with that approach: It didn’t account for strains of TB that were resistant to the two most important drugs in the cocktail. That oversight would have lasting—and deadly—repercussions.

As an official arm of the United Nations and the world’s largest public health agency, the WHO wasn’t blind to the scourge of multidrug-resistant TB. But it had looked at the scope of the crisis and made a dismal calculation. Based on its mathematical modeling and the deadliness of the disease, the WHO had decided that treating drug-resistant TB was hopeless. “Effective treatment is often impossible in poor settings,” the agency wrote in 1996. It determined that the best approach was to focus on treating standard TB—to let the world’s poorest and most marginalized populations die of the drug-resistant disease, hoping that their killer would eventually burn itself out. “They actually believed this,” Seung says now, still astonished. “They thought they would all just die.”

 

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Medical supplies from the Eugene Bell Foundation are prepared for delivery. / Photograph courtesy of KJ Seung

I first met Seung about three years ago. At the time, I was an editor at Partners in Health, the Boston-based nonprofit where Seung has spent nearly his entire career. I was not part of Seung’s team, but our work overlapped on occasion.

Fit, with thick black hair accented by a streak of gray, Seung can make a budget suit from T.J. Maxx look like it came custom from Hermès. The 45-year-old doctor possesses the type of dark humor you need when your chosen line of work is fighting a disease that kills more than 1 million people a year, and whether he’s training a young Nigerian physician to manage the complex side effects of TB drugs or reviewing a grant proposal, Seung demands precision and perfection. Among his more-provocative pieces of attire is a tan blazer with the word “Arrogant” embroidered in pink stitching down the sleeve. He sometimes attempts a kind of self-deprecating stance, but those who work under him know better: Seung has a high opinion of himself, and he can be an inspiring or demoralizing presence, depending on the day. That stubbornness, however, has been an asset to Seung in his battle against the healthcare establishment’s conventional thinking.

Back in the 1990s, before he knew anything about TB, Seung was, by his own admission, “a very bad medical student” at Stanford. That was surprising; Seung was a Harvard grad, born into an intensely successful family. His father, who emigrated from North Korea as a young man, is a renowned philosopher at the University of Texas at Austin. His mother is a classically trained pianist who studied at Juilliard. His older brother Sebastian is a famous neuroscientist and Princeton professor whose TED talk has been viewed more than 800,000 times.

Years later, when it came time to select his residency program, Seung opted for a county hospital in Los Angeles. He soon found himself walking the line between doctor and advocate. Budgets were tight, resources were limited, and many of the patients didn’t have insurance or access to healthcare. Seung recalls insisting that every patient deserved the highest level of care—a view that he claims administrators didn’t always share. “You constantly [felt] like you were fighting the system,” he says of his time in Los Angeles. “I think those lessons were perfect for my current work.”

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Stacks of patients’ medical prescriptions. / Photo courtesy of KJ Seung

In 2001, after completing his residency, Seung joined Partners in Health, recognized for its social-justice approach to global healthcare. Its physicians were known for training locals and building functioning health systems in places beset by dysfunctional governments and meddling foreign aid agencies. One key focus for Partners in Health became fighting drug-resistant TB, particularly in countries that hadn’t acknowledged the presence of the disease. In its early days, those efforts were so successful that the Bill & Melinda Gates Foundation awarded it $44.7 million to expand them.

When he was 31 years old, Seung first signed on to fight tuberculosis in Carabayllo, a shantytown near Lima, Peru. The slum marked an inflection point in the history of drug-resistant TB. Before Seung arrived, two of PIH’s founders, doctors Paul Farmer and Jim Kim, had spent years in Lima, expressly challenging the WHO’s insistence that drug-resistant TB was too expensive to treat in poor countries. Ironically, the WHO had been touting Peru as a success story for its standard four-drug regimen. But the more time Farmer and Kim’s team spent in the slums of Lima, the more cases of drug-resistant TB they uncovered. To treat patients, they built a system that screened for drug resistance and delivered the correct drugs, then hired nearby community members to accompany patients through the long and difficult treatment. Farmer and Kim were having remarkable success—curing 80 percent of patients they treated. But they were reaching only a tiny portion of Peruvians stricken with drug-resistant strains.

Seung’s mentors had prepared him for the challenge of battling what he calls “shockingly crappy public health policy,” but nothing could have prepared him for the social complexity of the disease. He spent months working with Peruvian nurses and doctors, building on the gains his mentors had made. Though he had studied the clinical aspects of TB, it was the first time he’d come face to face with a full-blown multidrug-resistant TB outbreak in a country ravaged by poverty. It was emotionally grueling work: Seung and the local nurses made rounds along the steep dirt roads of Carabayllo, going shack to shack, meeting with very ill patients. In many households, family members had accidentally infected their loved ones, and were hopelessly watching their siblings, parents, or children die.

After nearly three years of shuttling back and forth between Peru and Boston, Seung was exhausted and depressed. He was saving lives, but death still weighed heavy on him. There were too many patients he was unable to help. Burnt out, Seung threw in the towel and took a job in 2004 at the WHO. The organization’s policies had infuriated him, but he thought he could change the system from within: He wanted the WHO to train local healthcare workers in poor communities to administer AIDS medication. His stint with the agency didn’t last long. Soon after arriving at the WHO’s headquarters in Geneva, terrifying news emerged from South Africa: Doctors had detected a new strain of tuberculosis that was resistant not only to the key first-line medications endorsed by the WHO, but also to some of the most effective second-line drugs used to treat multidrug-resistant TB. According to one of the first official medical reports, this strain was killing 98 percent of patients—and, uncharacteristically for TB, it was doing so at breakneck speed. The median time before death was a mere 16 days. It became known as extensively drug-resistant TB, or XDR-TB, and it scared the hell out of everyone.

In 2006, Seung quit the WHO and returned to Partners in Health. His first task was to help build a drug-resistant TB program in Lesotho, a small and deeply impoverished enclave-country nestled inside South Africa. The average life expectancy was 45, and nearly a quarter of adults had HIV. The “noxious synergy” of drug-resistant TB and AIDS floored Seung. He was used to seeing TB patients die over the course of months or years; here they were dying in weeks. Overwhelmed, Seung called his mentor, Paul Farmer. “It’s not going to be like Peru,” he told Farmer. “Are you going to be happy with a 50 percent cure rate, with half the people dying?”

This was the fight Seung had chosen: a fight that could not be won, that could only be lost more slowly. The plan was the same: train local nurses and doctors, dive into the remote communities to screen as many people as possible, and hunker down for the long defeat. It was awful, and progress came haltingly. The cure rate eventually ticked up to around 70 percent, where Seung says it hovers today. The outcomes are consistently better than the global average, but drug-resistant TB remains difficult to cure.

 

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Seung and an official talk at a TB treatment center in Hwanghae Province. / Photograph courtesy of KJ Seung

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.

Source URL: https://www.bostonmagazine.com/health/2015/11/24/kj-seung-tuberculosis-north-korea/