A North Korean man identified with a false name, Shin Jung-nam, first saw symptoms of tuberculosis (TB) in 1996. Living with the excruciating pain, he went through medical treatment time after time with the regular TB-fighting drugs. But no progress was made in more than 10 years, leaving him with no option but to embrace death.

At that moment, he saw a miracle in the helping hands of the Eugene Bell Foundation, an Anyang, Gyeonggi Province-based charity organization. He sent his phlegm samples to TB laboratories in the South and learned that he had developed multidrug-resistance TB due to years of improper use of the first-line drugs. He was also told that he could live if he took a mix of old drugs carefully prescribed for him by a Korean-American doctor. He started the treatment program designed by the foundation in 2009 and left the center three years later. He was cured.

“I thought I could die like this but then I found the Eugene Bell Foundation. It was the last chance for me from heaven. I was greatly motivated just knowing that there is someone else who understands my pain,” Shin sent a message to his South Korean donor, who paid 5 million won ($4,500) for his three-year treatment that earned him another chance at life.

Shin is one of about 600 patients with MDR TB in North Korea currently under treatment programs implemented by the Eugene Bell Foundation.

Founded by Stephen Linton, the great-grandson of Eugene Bell, one of the first generation of American missionaries to Korea in the late 19th century, the organization has been making miracles in the communist regime with helping hands from the South Korean community. 

Initially providing food assistance to North Koreans during the famine in 1995, Eugene Bell shifted its focus to tuberculosis, one of the most serious diseases there, at the request of the North Korean government. In 2007, the foundation again changed its mission to MDR TB, which requires more dedicated medical care over the long term.

MDR TB is found in those who failed with the top drugs: isoniazid and rifampicin. The patients who developed a resistance to those drugs have to go back to old drugs that are less effective in curing TB and have serious side effects. Patients are recommended to isolate themselves and take a mix of old drugs, which are individually prescribed, for about two or three years.

The foundation is the only nonprofit organization that helps MDR TB patients in the reclusive country walk away from death, reunite with their families and start a new life.

The organization delivers boxes of individually prescribed medicine for MDR patients in the North purchased with donations from South Koreans as well as ethnic Koreans all around the world. A medical assistance team, led by Linton, visits North Korea twice a year to check on patients and manage administrative work to expand its mission to more places and reach out to people in desperate need of proper medication. Linton’s team includes retired foreign Catholic priests who can speak Korean and Kwon-june Seung, a Korean-American medical doctor who specializes in MDR TB treatment. No Koreans are allowed on Linton’s medical team, except for his Korean wife, he said, adding he hopes to bring his Korean staff to North Korea in the future. Unlike other NGOs and other global organizations, Eugene Bell has developed a system that identifies the names of donors and recipients, in order to exchange care and interest from both sides.

“Humanitarian aid is a love letter. What’s the point if the love letter has no sender’s address or name? We worked to make sure that we were just a postman. Credit went to a person who donated and the letter was delivered by the postman, us,” he said.

Treating MDR TB patients in North Korea is nearly impossible without support from outside. The price of drugs is a major problem.

“Regular TB medicine costs about 30,000-40,000 won but MDR TB costs us, for a full treatment, 5 million won per person, which is 150 times more expensive. It is a much more complicated program and much more expensive. So as an NGO, depending on private-sector funding, there is no way to treat everybody even in the regions we cover,” Linton, founder and chairman of Eugene Bell, said in an interview with The Korea Herald.

With $2 million worth of donations a year, the foundation is capable of accepting only 200 to 300 new patients a year, far less than the estimated 5,000 North Koreans who caught MDR TB every year.

The foundation currently supports eight TB sanatoriums in North Korea, all located within 200 kilometers of the capital Pyongyang.

“Pyongyang is the worst place (for TB incidence) in the country and their relative economic advantage has also given them the opportunity to develop an MDR, and they are dying,” Linton said.

“So for me, whether they are retired soldiers, officials or laborers, once we get scientific confirmation that this person has MDR TB, I don’t care. They are going to die if they don’t get it.”

However, most of the patients coming to TB centers are from the lower classes who worked hard and lived in crowded homes with affluent rates of TB. Tuberculosis is primarily an airborne disease and can be transmitted when an infected person coughs, sneezes or speaks.

Every six months, when Linton and his team visit North Korea, people with TB gather around the centers with a desperate hope for life.

Only a few of them are registered to the center and the rest of them must wait until the center has room for them in the following six months. Some of them die while waiting, Linton said.

“You don’t see this anywhere else. What is tragic to me is that in the Korean Peninsula we are talking about a location that is no more than three hours from here (Seoul). You have to go through this (screening) process, frankly because we have not enough funds to support to handle these people,” he said.

In other countries, disease control center workers usually go out to find TB patients and even pay them to take treatment because most don’t want to go through the painful treatment process, he added.

Even if they are accepted to the program, chances of success are 60-70 percent.

If the phlegm sample test comes out TB negative for 18 months, they are considered cured.

“We struggle with people who don’t convert within two years, it is over. It means that the medication we use is not working,” said Linton who recently came back from his two-week regular trip to North Korea.

Every time he visits centers in the North, the 62-year-old humanitarian expert said he faces both life and death. He hosts a ceremony for both people who have won and also those who have lost. But it is heartbreaking to see people who failed clapping for those who overcome the disease, he said.

“Every time I do it, I just am amazed at these people. People would just stand there and hear what is essentially of that sense, thank for having tried, thank their donors and clap for the people who won.

“I don’t think you would see this in anywhere in the world. It speaks to something to what potential (there is) within the average of North Koreans. It also may teach us about what we have lost, as our expectation has grown up so large so we would not accept something like that.”

Many people believe that scientific and economic progress have gotten TB under control. However, South Korea is not safe from the threat of TB.

“This is not a disease you can eradicate. There is no vaccination for that. Even with BCG injection, people get TB virus. And germs adjust to new medication very quickly,” Linton said.

One out of every three South Koreans is known to have the virus that causes TB, according to reports. There are about 975 MDR TB patients and 140 XDR TB patients registered as of last year by South Korean health authorities. XDR TB, or extensively drug-resistant tuberculosis, is a form of TB that involves resistance to both first- and second-line TB drugs, as well as injectable drugs.

South Korean health authorities said people with XDR TB here have a 20 percent chance of death and 50 percent see progress in other treatments such as surgery and other advanced-technology medication.

But none of that is possible in North Korea, Linton said, where being diagnosed with XDR TB in North Korea is a death sentence for patients.

By Cho Chung-un (christory@heraldcorp.com)