For more than a decade, Dr. KJ Seung has been working with Partners In Health to stem the spread of tuberculosis (TB), which kills more than 1 million people every year. From Peru to Lesotho, Seung, 43, has helped design, implement, and scale up programs that deliver effective treatment to patients with hard-to-treat, drug-resistant strains of TB.

In 2009, Seung began collaborating with the Eugene Bell Foundation to treat TB patients in North Korea. He has since visited the country seven times. While it's well documented that TB has long been a problem in the country, Seung believes that drug-resistant TB is much more widespread in North Korea than previously thought. Worse, there are few resources in the country available to treat it.

This week, Seung published a groundbreaking paper in PLOS Medicine that warns that until drug-resistant TB treatment is readily available in the country, the number of drug-resistant TB cases will continue to climb, imperiling the entire Korean peninsula.

In this exclusive interview, Seung explains the factors that are fueling North Korea's drug-resistant TB epidemic, why the situation is likely to get worse before it gets better, and the immense challenges North Korean health professionals encounter every day.
 

Can you explain your background in TB and how you began working in North Korea?

I've been working with Partners In Health (PIH) since 2001, when I finished my medical training. My first job at PIH was in Peru, where we were helping the government build a national multidrug-resistant TB (MDR-TB) treatment program. So I gained a lot of experience in how to treat MDR-TB in a resource-poor setting. 

In 2009, I met Dr. Stephen Linton, the director of the Eugene Bell Foundation. He had found quite a few North Korean patients with MDR-TB, and had begun to start treating these patients. He knew PIH had expertise in MDR-TB, and asked us for help in developing a program.

What's the focus of the Eugene Bell Foundation?

TB is a major public health problem in North Korea. The work of the Eugene Bell Foundation focuses on a subset of TB patients that are infected with a highly resistant strain of TB called "multidrug-resistant" (MDR). MDR-TB requires very expensive drugs that are not readily available in North Korea. Eugene Bell raises money to buy these drugs from small private donors—mostly churches, religious groups, and individuals. Each donor is connected to individual patients. Since MDR-TB treatment generally takes two years, this is a substantial commitment, both of time and money.

We visit North Korea twice a year to deliver MDR-TB drugs to each patient registered in the program. On each visit, we talk to every single patient to make sure they are still in the program. We also diagnose and enroll new MDR-TB patients on each visit. Right now we are enrolling about 500 patients every year. That seems like a lot, but it's not enough compared to the need.

Their illness is so advanced, I know many of them would die even if they were treated in the U.S., but we enroll them anyway. Everyone deserves a chance at life.

In your new paper, you describe a vast network of TB sanatoria within North Korea. What are these like to work in?

It's very difficult to see large numbers of patients dying from a treatable infectious disease. I've treated MDR-TB in a lot of different countries, but the situation in North Korea is the worst I've ever seen. There are simply too many patients. At every sanatorium we visit, there are lines of patients who have failed multiple courses of treatment with regular TB drugs and are hoping to get into our treatment program.

It's important to realize that these sanatoria were not designed for MDR-TB patients. They were intended to be places away from urban areas where regular TB patients could recuperate for a short time while starting treatment and then go back home to their families. But they are increasingly filled with patients with drug-resistant TB who are taking regular TB drugs for the second, third, or fourth time.

Most of the patients have been suffering for years from MDR-TB without any access to effective treatment. Some are literally carried in from home on the backs of their relatives, barely able to breathe. Their illness is so advanced, I know many of them would die even if they were treated in the U.S., but we enroll them anyway. Everyone deserves a chance at life, even if it's small. We owe them that.
 

You write that up until the publication of your article, "there has never been any clear scientific evidence that drug-resistant TB is a serious problem in North Korea." How is that possible?

It is true that this is the first time laboratory data from North Korean MDR-TB patients have been published in a scientific journal. But honestly, if you search the Internet, you'll see that Dr. Linton has been talking about this problem for years to anyone who would listen.

The Eugene Bell Foundation used to provide regular first-line TB drugs, but the North Korean doctors began telling him there were an increasing number of patients who did not respond to these drugs. The doctors suspected that these patients had drug-resistant TB, but they couldn't know for sure since there was no laboratory in North Korea that could test for drug resistance. So Dr. Linton collected sputum from some of these patients to test in South Korea, and it turned out the North Korean doctors were absolutely right.

A lot of the credit has to go to Dr. Linton. He's not a medical doctor, but just by listening to the North Korean doctors, he discovered a major epidemic. Sometimes the evidence is staring you in the face. You just have to listen to what people are telling you.

In our discussions with the North and South Korean governments, and with international organizations like the Global Fund, UNICEF, and the World Health Organization (WHO), we have been quite open that Eugene Bell has diagnosed a large number of patients with MDR-TB. We've also been open about the fact that there are many more MDR-TB patients we don't have the resources to treat.

There have been many news articles that discuss drug-resistant TB in North Korea. But none of this has led to any significant change in how TB is diagnosed and treated in North Korea. The only group treating significant numbers of MDR-TB patients in North Korea is Eugene Bell. Most importantly, the best-resourced program in the country continues to use an outdated TB control strategy that's going to make the problem worse. This has to change.

Can you elaborate on why it's an "outdated" strategy?

When I first started treating MDR-TB 13 years ago in Peru, there was real confusion in the international medical community about how to address this problem. A lot of people thought it was just too complicated for resource-limited settings, and we should only focus on drug-susceptible TB. The idea was that if we treated drug-susceptible TB really well, we wouldn't make any more drug-resistant TB. Then the drug-resistant TB patients would just die and that problem would go away.

The flaw with that strategy is that TB is an airborne infectious disease, so the MDR-TB strains spread. The only way to stop TB transmission is to treat it. There are now some countries where 20 percent of new patients—meaning patients who have never been diagnosed with TB before—are found to be infected with MDR-TB.

Then you get stuck in a vicious cycle. Drug-resistant TB spreads to more people.

So the consensus in the international medical community today is that all TB, including drug-resistant TB, has to be treated correctly. This is the standard of care throughout the world and the strategy promoted by the WHO.

But it's not happening in North Korea, where patients don't get tested for drug resistance and the whole program is based on treating all TB patients with the same first-line drugs—a strategy the international community discarded more than a decade ago. And even if they were tested for drug resistance, it wouldn't matter because the proper medicines aren't available.

So drug-resistant TB patients in North Korea end up getting treated with inadequate regimens of first-line TB drugs. From a public health standpoint, this is very serious, because for TB, bad treatment is worse than no treatment at all. Bad treatment ends up just creating more drug resistance. Then you get stuck in a vicious cycle. Drug-resistant TB spreads to more people, they get treated with the same inadequate regimen of first-line drugs, and the strains become more resistant.

All parties, including the international organizations that support the North Korean national TB program, bear some responsibility for this. For example, all first-line TB drugs in North Korea are currently purchased through the support provided by the Global Fund. UNICEF and WHO are responsible for the implementation of this project and have a responsibility to make sure these drugs are being used on patients for whom they were intended.

What do you mean when you write, "international aid … has largely ignored the possibility that drug-resistant TB strains are widespread"?

Even though there is significant international aid to the North Korean TB control program, very little of it is going toward diagnosis or treatment of drug-resistant TB. It's really hard to understand why.

Certainly the lack of drug resistance survey data seems to be a major sticking point. But this is a common problem in other resource-limited countries, which often don't have a laboratory capable of diagnosing drug-resistant TB. For whatever reason, it seems like the international experts implementing the Global Fund project are simply not convinced there is much MDR-TB in North Korea, and they don't feel like anyone should be treating MDR-TB until a scientific survey can be done.

Let me tell you about a discussion I was having with someone at WHO. The WHO is the main technical lead on the Global Fund project. I told him the whole story about what it was like to visit the sanatoria, and that we were diagnosing a lot of MDR-TB. His reply was, "What do you mean, MDR-TB? The outcomes we're getting are great! How can there be much MDR-TB in North Korea?"

When you talk to North Korean TB doctors, however, you hear a very different story. They are very open about the fact that there are patients who aren't being cured with regular TB treatment, even when the patients are admitted to a TB facility and doctors are absolutely sure they were taking the drugs. And the North Korean doctors worry that the number of these patients is increasing.
 

One of the nice things about being a doctor is that I get to ignore the nonsense on the nightly news. Patients are patients no matter where you are.

So what does your research suggest about the prevalence of drug-resistant TB in North Korea?

We found that 87 percent of the patients we tested had MDR-TB. Now we’re not saying 87 percent of all North Korean TB patients have MDR-TB. We didn't do random testing. We were testing patients the North Korean doctors suspected of having MDR-TB. But certainly the results confirm the suspicions of the North Korean doctors.

I am quite sure the Eugene Bell program is only seeing a sliver of the total MDR-TB population in the country. Even at the sanatoria we visited, we didn't test all the patients suspected of having MDR-TB. We tested only the number of patients we had drugs to treat. And there are many more sanatoria we don't have time or money to visit. Wherever we've been asked to expand our program, we've seen the same problem. There are many patients who don't respond to regular TB drugs, and when we test them, they have MDR-TB.
 

According to your paper, the most urgent problem is the lack of access to second-line TB drugs that are needed to treat drug-resistant strains. What are the major barriers to access?

The treatment of MDR-TB requires very expensive second-line TB drugs. Keep in mind that treatment for regular TB requires a six-month course of treatment of four drugs. MDR-TB treatment requires a whole different set of drugs, drugs that were invented decades ago, but stopped being used because they were weak. So MDR-TB treatment is much longer, usually 24 months. And the drugs themselves are pretty noxious so patients have a lot of side effects from them.

The main barrier to access is the cost of the drugs themselves. This is a major problem throughout the world. If you had asked me this question five years ago, I would have said it was probably impossible for North Korean MDR-TB patients to get access to the treatment they need. But the picture has changed drastically with the entrance of the Global Fund. The Global Fund could completely change the way drug-resistant TB is treated in North Korea. The funds are there to treat many more MDR-TB patients than are currently being treated. But the international community needs to be convinced that drug-resistant TB is a serious public health problem.

In the U.S., we really only hear of North Korea through sound bites on nightly news. How has your perception of the country evolved throughout the course of your work there?

One of the nice things about being a doctor is that I get to ignore the nonsense on the nightly news. Patients are patients no matter where you are.
 

To learn more about PIH's tuberculosis work around the world, click here. 

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