Eugene Bell Foundation Newsletter Vol.10
Eugene Bell Foundation
Contents
Newsletter Vol.10
Front cover image: Patients bid goodbye to a departing Eugene Bell delegation, promising to get better and see the next delegation in six months.
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Greetings from Dr. Stephen Linton
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Photo Story: What it means to write “Eugene Bell” on a box of medicine
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Report from Eugene Bell’s Fall 2013 Visit to North Korea
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Stories from our Patients: “I want to get better soon!” - by Han Soo-young “I don’t have to cry anymore!” - by Song Jincheol
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The Story of Nurse Choi: “My Suffering Was a Blessing, It Allowed Me to Understand the Suffering of My Patients” - by Nurse Choi Jeongsoon
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An interview with a donor, Burim Components
Since 1995, the Eugene Bell Foundation has provided humanitarian aid to North Korea, delivering hope to those in great need. For information on how to donate, please call us at (202)393-0645 or find us online at www.eugenebell.org/english
Eugene Bell Newsletter Vol.10 Published December 2013 www.eugenebell.org/english (202)393-0645 P.0. Box 15394 Washington, D.C. 20003
Greetings from Dr. Stephen Linton
New growth and a historic occasion to celebrate.
There are many difficulties involved in caring for Multidrug-Resistant Tuberculosis patients in North Korea, but there are also days of incredible joy. When we first started treating MDR-TB patients, the only way to diagnose the disease was to obtain a sputum sample, bring it to our laboratory, and finally deliver the crucial medicine six months later on the next delegation visit. Unfortunately, many newly diagnosed patients couldn’t wait six months to start treatment and perished before they could take a single pill. New technology in the form of a GeneXpert diagnostic machine now allows us to carry the laboratory to the patient. The feeling of being able to deliver the medicine a patient needs on the same day that they submit their sample is unforgettable. Similar to the introduction of GeneXpert machines, there has been another momentous change in our treatment program in North Korea. Up until now, we have only been able to treat patients in North and South Pyongan Province and in the city of Pyongyang. But starting this fall, our MDR-TB program has expanded to twelve centers, including the provinces of North and South Hwanghae and the city of Kaesong. Thanks to the sacrifices of our donors, we will soon be able to deliver medicine to new patients in these areas. While we are still woefully behind in our campaign to cure all of the MDR-TB patients of North Korea, we are extremely glad to now have the ability to accept patients all the way from Sinuiju in the far northwest of the country down to the Southern border city of Kaesong. We thank you for your devotion and your support as we expand to treat new patients. We hope you will join us as we begin to reach more of the people of North Korea. Sincerely,
Dr. Stepehen Linton Chairman The Eugene Bell Foundation
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What it means to write “Eugene Bell� on a box of medicine.
The box this patient holds is the most precious of all the supplies Eugene Bell brings to North Korea. On the side, “Eugene Bell Foundation” stands out in bright letters, one name to represent the men, women, and children who have come together to open their hearts to the MDR-TB patients of North Korea. This box is their gift, each pill it contains the result of one person’s compassion. “It’s not much, but I want to help the people of North Korea, what can I do?” “Please take this small offering and turn it into medicine.” “Please use this for the medicine you’re sending to North Korea.” These are the words of our donors, their hopes pouring forth and coming together to make a miracle. As each bottle, every pill, represents an individual donor, there is no room to write every name on the box we deliver to their patient. In place of dozens of names, we write just one: Eugene Bell. These are very special boxes, and the patients who hold them feel the weight of their donors’ love inside. As their breathing grows easier and their bodies recover, patients will remember. Within that single name lies dozens of other names, it is their love that we carry into North Korea. To all of our donors, Thank you.
Left: Patients at the Yangdeok Tuberculosis Center hold their medicine, the side of each box reads: “Eugene Bell Foundation” 㡔㫸ⷜG⎨㏘⤼䉤 Eugene Bell Newsletter
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YWXZ≸G䚌ⵌὤGⵝ⺵G⸨Ḕ 2013 Fall North Korea Trip Report
More Patients, More Time in North Korea Report from the 2013 Fall Delegation Visit
Three Long Weeks This fall, the Eugene Bell delegation was able to once again deliver medical supplies obtained through the support of our donors into the hands of our patients without any incident. The visit this fall lasted for three weeks, starting on October 15th with our departure from South Korea and ending on November 5th when we returned. This was our first three-week trip, ordinarily we stay for only two weeks. This time, the need to visit a wider area and more centers meant that we needed to spend more time in North Korea. There were three weeks of waking up before dawn and laboring long into the night. From afar, we felt the prayers of our donors and found fresh strength to finish our work.
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Four New Locations:
Our New Centers Up until this year, our delegations visited and oversaw treatment at centers in South Pyongan Province and in the city of Pyongyang. Starting this fall, we were able to add four new centers and expand our area of operations into North Hwanghae Province and the city of Kaesong. Patients across the entire western half of North Korea are now able to seek treatment at a Eugene Bell center. We were able to visit the new centers in Kaesong, Bongcheon, Yeontan, and Ryeokpo as part of our tour of all twelve centers. At these four cites we met with patients suffering from multidrug-resistant tuberculosis, gave them medicine, and worked hard to set up their course of treatment.
Kaesong Tuberculosis Center
Bongcheon Tuberculosis Center
A Story from a New Center: Kaesong Compared to the other centers we visit which are located far away from cities, the tuberculosis treatment center in Kaesong was equipped with better facilities and had a significant inventory of first-line tuberculosis medicine. In addition, thanks to supplies provided by other NGOs, patients were living in relative comfort. However, in this facility built to hold 100 patients, only 30 beds were occupied. Despite better access to financial support and facilities, the lack of advanced care and expensive medicine capable of handling MDR-TB cases meant that the center could not fulfill its mission.
Yeontan Tuberculosis Center
Ryeokpo Tuberculosis Center
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Hearing that a Eugene Bell Foundation delegation was soon to arrive, dozens of people who had failed treatment with regular TB medications gathered at the Kaesong center to greet us. Unfortunately, we were only able to enroll a small number of the many who sought out our aid. Not just at Kaesong, but at every center we visit we are forced to confront limitations to the number of new patients we can enroll. But we are now hopeful that, thanks to the devotion of our donors and the eager collaboration of North Korean medical personnel, we will be able to treat more patients in the future.
Customized nutritional assistance for our MDR-TB patients
Her face, once ashen and drawn from disease, was bright and smiling as she talked with us at graduation and said she will never forget the Eugene Bell Foundation until the day she dies. “Back then, I was feverish and in so much pain. I looked really bad. But after taking the medicine I received through the Eugene Bell Foundation, my fever diminished, I stopped vomiting blood, and I was able to start eating again!” Now recovered from her disease, Yoon brightens as she recalls her struggle to overcome MDR-TB. “My tests began to come back negative, I began to feel better, and I saw how my disease was fading away. It was hard to go through the treatment, but I took every medicine they gave me so I could get better.” Now that she has overcome her disease, Yoon talks about getting married and having a baby, a dream that was impossible until she finished treatment. With a final smile, she offers her thanks to the donors who provided for her treatment. Like a clear blue sky emerging after weeks of rain, Yoon looked like a different person at her graduation. This is the miracle our donors make possible. At every Eugene Bell treatment center, miracles are appearing.
The 1:1 Patient Sponsor Program The old saying that you get tuberculosis because you don’t have enough to eat was right in recognizing the strong connection between a patient’s nutrition and their disease. In order to ensure swift recovery, Eugene Bell began providing individualized nutritional supplement packets to each patient this spring as a complement to our vitamin program. In particular, the strong side-effects common to some MDR-TB medicines make it difficult for patients who have been weakened by TB to take their medications. Nutritional supplements strengthen a patient and help them keep their medicine down. As they say, “a spoonful of sugar helps the medicine go down”.
Graduation Day
While we carry out graduation ceremonies for patients during every visit, there was one particularly special graduate this fall. We first met Ok-seong Yoon when she cried out for medicine to a Eugene Bell delegation.
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For delegation members, there is no greater sadness than having to turn away someone in dire need of treatment. But our teams are also struck by how these applicants manage to smile despite their suffering. While they weren’t able to enroll in treatment at a Eugene Bell center this time, they are cheered with the hope of entering the program during our next visit, of finally receiving the medicine that will cure their stubborn disease. We ask for your prayers and for your support to increase the number of patients we are able to treat. For inquiries about our 1:1 Patient Sponsor Program, please contact our office at 202-393-0645.
Stories from our Patients, Soo-young and Jincheol
ˈI want to get better soon!
Hello, my name is Han Soo-young. I am sixteen years old. I was diagnosed with tuberculosis two years ago. When I heard my diagnosis, I was terrified, because I immediately thought of my mother, who died from tuberculosis. To treat my tuberculosis, I took a course of regular TB medicine, but I didn’t get better. I took a more powerful course of regular TB medications twice more, but my cough and my fever didn’t go away. To get treatment, I entered a tuberculosis center, which meant that I couldn’t go to school anymore. Sometimes I would see my friends walking past the center and I would start to cry. When would I be able to go back to school? Last year I was able to leave the center and go to school for a short time, but then my tuberculosis came back and I had to return to the center. After meeting the Eugene Bell Foundation and getting tested by the GeneXpert, I immediately got new (MDR-TB) medicine. The doctor told me that taking this medicine would be hard, but I will do my best to take it. And I for sure want to get better so I can go back to school and my friends. If I were able to go back to school, I would run around and play and study so hard. And later, when I grow up, I want to be a famous surgeon. Please give my thanks to the donor who provided my MDR-TB medications. I promise to get better and send you a picture of what I look like when I am healthy. Han Soo-young Botong MDR-TB Treatment Center (name has been changed to protect her privacy)
ˈI don’t have to cry anymore!
Hello, my name is Song Jin-cheol, I am thirty-seven years old. In 1998, I was diagnosed with tuberculosis. My mother looked after me. She did everything and anything she could to help. But as it happened, the medicine that I took did not lead to any improvement. My body began to waste away and I could barely speak. For fifteen long years, that was my life, until the day when I met the Eugene Bell Foundation. At a time when I felt that I was at the very doorstep of death, they must have looked at me and thought that I was exaggerating to attract their attention. Talking with the delegation on that first day, I suddenly felt tears flowing down my cheeks. When I saw how they felt my pain and wanted to help me, I couldn’t get out any words and I cried even harder. I should have said some words of thanks to those who had worked so hard to send this expensive medicine to me, a person whom they had never met before in their lives. I am not a relative, or even an acquaintance, and yet my donor sent me these precious medicines to me! I am so thankful! My throat has recovered a lot, so that I am now able to speak. The happiest moment was seeing my mother’s face light up when she saw me. When she came to visit me here at the center, she told me to deliver her message of thanks to my donors and to the Eugene Bell delegation. I now have hope that I will get better. Once I fully recover, I want to go back home, start a family, and work like every other member of society.
Song Jin-cheol Songsan MDR-TB Treatment Center (name changed)
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The story of Nurse Choi
My Suffering Was a Blessing, It Allowed Me to Understand the Suffering of My Patients Nurse Choi Jeongsoon (name changed) Dongdaewon Multidrug-Resistant Tuberculosis Treatment Center
Choi Jeongsoon works as a nurse in Dongdaewon. She remembers living with MDR-TB and uses her experiences to cheer up her patients, treating their minds as much as their bodies. She took some time to answer questions for our delegation.
̵GNurse Choi holding medicine sent by her donor when she was a patient.
“This medicine is extremely painful to take, but it’s better than dying.” Just as he said, I suffered a lot as I took the medication, but every time I thought back to the Delegation Leader’s words and fought through the pain.
~ G G SG G G G G G G SG G G G G G G G G f I wanted to share my joy of recovery with other patients. Since I used to be a patient here, I know everything that goes through the mind of a patient as they are struggling through treatment. I can look at a patient and not just tell how their body is doing, but also how they are feeling and help their treatment in that way. So after I received my clean bill of health, I decided to remain here at the center and help patients.
Ms. Choi, how did you become a nurse at this MDR-TB treatment center? I was a nurse by profession but came here as a patient. After making a full recovery last spring, I remained at the center and began to work as a tuberculosis nurse. Could you tell us a little bit about how you overcame tuberculosis? My fight with tuberculosis lasted about seven years. It began when I got into an accident and shattered my leg. In order to recover, I had to get surgery, followed by a year of other repeated surgeries. I lost a lot of blood and received many blood transfusions. When my body weakened as a result of the accident and repeated surgeries, I must have contracted tuberculosis. I failed treatment for regular TB, perhaps because my immune system became weak. I was treated four more times with regular TB medications but did not get better. It was after those failures that I met the Eugene Bell Foundation. I could never forget Delegation Leader Linton talking to all of us, saying,
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Did your family try to change your mind when you told them you were planning to stay at the center? My family told me they worried about me, but they knew how I felt and supported my decision. My mother in particular was very happy that her daughter, who knew how painful it was to be going through treatment, was able to heal people and send them back to their families. She said to me, “Work hard so that many people can get better and return home.” So I am following her words and working hard. What are your plans for the future? Working here at the center, I also take strength from seeing patients improve day by day. I want to continue caring for patients, study medical science, learn more about TB, and then be able to treat even more patients. Is there anything you would like to say to your patients? It can be hard to be so far away from your family and continue taking these strong medications, but we have to fight hard all the way to the end. I hope you are all able to quickly recover, regain your health, and return to the warm embrace of your family to laugh together once more.
An interview with a donor, Burim Components ways to share what I had with my neighbors, I heard about the Eugene Bell Foundation. I am not trying to pay you a compliment, but I was impressed with Eugene Bell’s transparency. More than anything, I was thankful and I guess a little bit embarrassed that the descendant of a missionary family in South Korea was helping to do something that South Koreans were unable to do themselves... You are currently sponsoring five MDR-TB patients, singlehandedly saving their lives through your support. How do you feel when you receive photos of your patients and read the reports on their progress?
A Compassionate Company, Burim Components I will always remember the first time I met the owner of Burim Components, he humbly asked why we had come all the way out to his shop, where he didn’t even have a signboard to show the name of his company. He protested that he had made only the tiniest contribution, barely anything at all. But he also revealed to us his extraordinary compassion.
Could you tell us about your company, Burim Components? We produce components for heavy electrical machinery made by the South Korean company LSIS and relays produced by Hyundai Heavy Industries. Electrical transformers come in high capacity and low capacity variants, our company manufactures high capacity transformers.
Well, when it comes to TB patients in North Korea, I think they are in a tough situation, people who have almost been abandoned as hopeless. Being able to give them medicine, and then to see them respond by saying, “Thank you, Burim Components!” in the videos really brings tears to my eyes. I don’t think of it like, “I donated today,” I just set up an automatic payment and forgot about it. Once every six months, when I get a patient update, I remember that my life, my business and my daily work isn’t everything. ~ G G G G G G G G f I don’t really have the opportunity or the courage to go somewhere directly and volunteer, so I am very happy that I have this option to support a charitable project indirectly. And it feels great for me personally to be able to look back and take pleasure in what has been accomplished.
What does charity mean to you? I think that the most important value is saving lives. I am just thankful that I can play a tiny part in saving a human life.
What path led you to find the Eugene Bell Foundation, and what prompted you to start donating? There wasn’t one particular reason, I just felt like I was always caught up in my business and the demands of making a living. I try to be a devout Christian, and it just so happened that one day when I was in church thinking about specific ̵GThree patients sponsored by Burim Components
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www.eugenebell.org/english Fall 2012
Spring 2013
Fall 2013
Bae Jin-sook’s (name changed) improvement is visible in these three photos taken since she started treatment in 2012. Ms. Bae is sponsored by the students of Harvard University.
Change a Life in North Korea
Sponsor a Patient Through the Eugene Bell Foundation Patients are right now going through the daily pain of living with multidrug-resistant tuberculosis. One patient, who was able to recover after receiving medicine just in time had these words of thanks:
Support Eugene Bell
A gift of any size can be combined with valuable support from other donors to provide shipments of of lifesaving medication
Sponsor a patient
On a 1:1 basis, supporting the $200 monthly cost of MDR-TB medications and diagnosis until that patient recovers, (typically a two-year period).
$ 200 a month On a 2:1 basis, sharing the joy of healing with another sponsor and supporting a patient jointly for $100 per month.
“At the worst moments when I was struggling to survive, I knew that my donors stood beside me. Someone I had never met or even seen gave me the strength to go on.” There are many other patients like this waiting for treatment in North Korea. Please join us and make a miracle possible with the Eugene Bell Foundation.
$ 100 a month 1:1 and 2:1 Sponsors receive detailed reports, pictures of their patients, and recovery updates every six months. Call us at 202-393-0645 Find us online at www.eugenebell.org/english
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