Facing the Tuberculosis Crisis in North Korea: The Humanitarian Work of the Eugene Bell Foundation
Among the health care problems facing North Korea, tuberculosis (TB) is one of the most perilous. In 2017, the World Health Organization (WHO) reported some 131,000 cases of TB in the Democratic People’s Republic of Korea (DPRK), with some 16,000 individuals succumbing from the disease in the same year. The WHO also assesses that there were 5,200 new cases of multidrug-resistant TB (MDR-TB) in North Korea in 2017, but this figure is most likely underestimated. This illustrates a worrisome upward trend in MDR-TB incidence rates in North Korea (for example, in 2013, there had been only 3,500 new cases). The Eugene Bell Foundation (EBF, or the Foundation) stands out as the lone nongovernment organization (NGO) providing TB treatment in any form to the DPRK on a continuous basis, though several South Korean NGOs have sent medications in the past. The primary target of the EBF’s program is the treatment of MDR-TB, and it treats roughly one out of every ten North Koreans who have this more severe strain of TB. The Foundation’s humanitarian work has faced numerous difficulties and challenges in managing its treatment program, but it has also demonstrated a successful and consistent pattern of working with government and business institutions of different countries amidst the volatile political environment on the Korean Peninsula.
Global Dimensions of the TB Problem
Known as the “disease of the poor,” TB is globally perhaps the deadliest contagious disease caused by a single infectious agent (strains of mycobacteria). According to the WHO, 10 million people, among them one million children, developed TB worldwide in 2017 (many more have the latent TB infection and are at risk of developing active TB), and 1.6 million people died of the disease. Globally, 558,000 people have developed TB resistant to rifampicin—the most effective first-line drug to treat the disease; 82 percent of them had MDR-TB. The deadlier form of TB requires more extensive second-line medicine. But the problem is further exacerbated by the fact that only a fraction of MDR-TB patients are properly diagnosed and treated. Strains of TB that fail to respond to even the most effective second-line drugs are called extensively drug-resistant TB (XDR-TB), which comprised 8.5 percent of MDR-TB cases in 2017.
The EBF has devoted itself to humanitarian work in North Korea for 24 years. The Foundation is an American-South Korean Christian charity. It is formally registered as a not-for-profit organization and operates as an international corporation, coordinating projects at multiple levels and bringing the two Koreas and the United States together into a rare network. The EBF consists of three independent foundations: EB United States, EB Korea and EB Canada. The funding comes from all three EB organizations, but program management takes place at EBK’s Seoul office.
The Foundation has permanent staff in its Seoul office and enlists multinational volunteers for its work in North Korea. From its inception in 1995, the EBF provided food relief in response to the North Korean government’s international appeal for aid that same year. In 1995-1996, the Foundation sent a total 18,000 tons of food to the DPRK. Since 1997, the Foundation has focused on a TB treatment program, and over a period of ten years provided TB medication kits to some 250,000 patients. Since 2007, the EBF has turned its attention to MDR-TB. This treatment lasts 18 months and is done in isolation to prevent the disease’s spread. Since the TB micro bacteria is airborne and easily transmitted, family members of the infected are the first to be affected (an individual with TB can infect between 10 and 15 people through close personal contact within one year).
The North Korean contact point for coordinating EBF staff visits to the DPRK is the North Korean office at the United Nations (UN) in New York. On the ground in the DPRK, the EBF works closely with a North Korean team composed of doctors and officials from the Ministry of Public Health, hospitals and a TB laboratory in Pyongyang. The two teams visit medical centers together and coordinate the treatment of patients with local staff. With the exception of 2016, the Foundation’s team has visited the North regularly, even at the height of the nuclear crisis on the Korean Peninsula in 2017.
Effectiveness of EBF’s Assistance
Currently, the Foundation has around 1,800 MDR-TB patients in 12 sanatoria across four provinces of the DPRK. The EBF’s team visits these sanatoria every six months, tests and registers patients who have not responded to regular TB treatment and provides diagnostics and medicine. During the last trip in late April-early May 2019, the team registered more than 600 new patients. About a similar number of patients also finish the program every cycle. The cure rate is near 75 percent which is higher than the world average (55 percent), a number attributable to the cure regimen (which is recommended by the WHO), and the discipline of the patients eager and willing to follow a grueling treatment program that can have various side effects, such as nausea and depression. It is not at all uncommon for patients to ride a bicycle for hours or hitch a ride to reach the medical center for the checkup and registration. Most of the medical centers have farmland, and some greenhouses too, to grow produce for the patients. Family members also support the patients by providing food and firewood (for the floor heating in the patient wards) for them in the hospitals. The EBF supplies the patients with food supplements to improve their overall nutrition, which is an important element in the treatment process.
The work of the EBF in North Korea has experienced a myriad of difficulties—from fundraising to project implementation. Still, despite the political volatility on the Korean Peninsula, the Foundation has shown admirable continuity in its humanitarian aid to the DPRK for over two decades. The key to EBF’s success throughout the years has been its ability to nurture relations with its North Korean counterparts. Earning such trust and respect is a long-term process, and this is why the Foundation has been able to continue its work in North Korea over such a long period against all the odds. Another important factor in the constancy of EBF’s medical program is North Korea’s continued need for help in the diagnosis and treatment of MDR-TB. The Foundation’s program covers perhaps only 10 percent of MDR-TB patients in the DPRK.
Yet another reason for the long-term presence of EBF in the DPRK is history. Reverend Eugene Bell, a US Southern Presbyterian missionary, and great grandfather of the EBF’s founder Stephen Linton, arrived in Joseon (Chosun) Korea in 1895. Four generations of the family have devoted themselves to humanitarian work in Korea, including the operation of a TB sanatorium in Suncheon in South Jeolla (Cholla) Province for decades in the second half of the 20th century; TB was a severe health problem in South Korea until the 1980s (even today the South has the highest ratio of TB cases among the OECD members).
The Minor Impact of Sanctions on Medical Program
The more severe sanctions regime imposed since 2017 interrupted EBF’s operations temporarily (for two years) on a construction project—assembly of prefab patient wards—due to a ban on export of construction materials containing metal to North Korea, UN sanctions have not, however, interrupted the EBF’s supply of medicine to the North. The Foundation ships medicine and food supplements from South Korea to North Korea through a Chinese shipping company. Each shipment (usually every six months) also requires a permit from the Unification Ministry of South Korea. Using a ten-year license from the US Department of Commerce, the Foundation’s MDR-TB treatment program employs American automated machines—Xpert MDR/RIF (known as GeneXpert)—for on-the-spot testing of sputum. (The EBF team also takes samples of patients’ sputum for second testing in a South Korean laboratory.) Initially, the EBF team had to take these machines out of North Korea after completing its visits to the medical centers. But eventually, the Foundation received permission to store them at the British Embassy in Pyongyang during the team’s absence from the country. About a year and a half ago the EBF received permission to leave them with North Korean caregivers, who could use the machines for the diagnosis of MDR-TB at local treatment centers.
After the US administration imposed a travel ban on North Korea in 2017 following the death of Otto Warmbier upon his release from captivity, the American members of the EBF team have had to apply for permission to visit the DPRK. Exceptions can be made for humanitarian work, but the US Department of State issues a separate passport for the travel, which is valid for a single visit. American volunteers must apply for a separate passport for each visit to North Korea, and processing can take time. On the whole, EBF members have been able to receive passports without much problem. In the past there have been some isolated cases of declines; the US State Department no longer rejects delegation members, although the process does cause administrative time and expense.
Dwindling International Assistance
For various reasons, other aid organizations have pulled out of North Korea in recent years. The Europe-based Global Fund to Fight AIDS, Tuberculosis and Malaria (the Global Fund) supported a TB treatment program in North Korea for years, before suspending its sponsorship in 2018, which fortunately has not had any immediate effect on the treatment as the Fund left a supply of medications for TB and MDR-TB patients that will last until the first part of 2020. Drugs supplied by the Global Fund treat 130,000 TB patients in the DPRK. The WHO also sent an emergency supply of MDR-TB medications this year. But these medications, too, will run out next year unless a new Global Fund grant is approved. And given that it takes six to nine months from purchase to delivery of TB drugs to North Korea from the Global Fund and WHO, if orders for the supply of the medicine do not take place in the immediate future, the country will face a grave humanitarian crisis. Insufficient supply of TB medications in turn would trigger a steep rise in MDR-TB cases.
Conclusion: What Can be Done in the Face of TB Crisis
The EBF’s treatment program covers only a small fraction of North Korea’s total MDR-TB sufferers, while a reduced international supply of TB drugs to the DPRK exacerbates the country’s TB situation, resulting in a health care emergency. Foreign governments and international aid organizations need to realize this crisis and mobilize assistance to deal with North Korea’s TB problem. For example, it is estimated that North Korea requires US$5-6 million of normal TB drugs annually, and this amount can be multiplied several times if one considers the more expensive MDR-TB treatment. Negotiations continue in hopes of finding a way to restart the Global Fund assistance program. EBF also plans to expand its MDR-TB treatment program, but this will still be insufficient to contain the deadly disease. In order to diagnose and treat more MDR-TB patients, there is a need for a GeneXpert network of around 200 machines, which is a huge challenge in itself. Without early and accurate diagnosis, MDR-TB cannot be reduced. EBF’s contribution has been to develop systems for diagnosis and treatment that work effectively in the North Korean context, and other aid organizations can use this experience to carry out their own projects in the DPRK.
The research for this work has received generous support from the Academy of Korean Studies (AKS-2016-LAB-2250005).
World Health Organization, Global Tuberculosis Report 2018, November 2018, 1-2, https://www.who.int/tb/publications/global_report/en/.