Mae Sot, a town in Thailand on the Thai-Burmese border, is a vibrant community with a diverse population largely made up of Burmese refugees and migrant workers who travel morning and evening across the border to seek work in Thailand.
Not too far away lies Mae Tao Clinic, a sanctuary for these refugees, migrant workers, and internally displaced people within Burma seeking affordable and quality health services. The clinic was founded by Dr. Cynthia Maung, or Dr. Cynthia as she is known worldwide, after she herself fled to Thailand as a refugee in 1989.
Growing up, Dr. Cynthia would accompany her father, who was a health assistant, to perform public health services in many villages. This inspired her to pursue medicine.
“He had to travel to many villages and sometimes we had to drive the boat and walk in the rice field for many hours. I started learning about access to rural healthcare, how for poor communities it is really challenging and there is need for many public health or medical staff.”
In 1985 she finished her medical studies and began working in a private maternity clinic run by her grandfather. She was now a health professional working in the delivery room, talking to women about their reproductive health needs and access, family planning, and providing other maternal health services. The clinic was very busy and successful – even though her family was poor itself, they were able to start saving money to buy medicine and plan supplies in advance. Then suddenly that all changed.
Longstanding conflict between the Karen people, an ethnic minority making up 7% of the population of Burma (around 5 million people), and the Burmese government dates back to 1949. Led primarily by the Karen National Union (KNU), the war that ensued and continues to this day began as a fight for independence. Since that time, the Burmese government has changed the name of the country of Burma to Myanmar, and conflict has ebbed and flowed.
During the late 1980s, political uprisings had been taking place across the country of Burma, led by activists and students. In response, the Burmese government declared martial law and the military pursued a violent crackdown. Many villages were burned to the ground, family members disappeared or were forced to work tirelessly under the military, and many Karen people and other ethnic minorities were killed or displaced. Many others fled, some for their own safety and some to continue the resistance movement. Dr. Cynthia was one of the Karen who chose to flee.
“We heard what the government was saying, that ‘we can shoot you anytime,’ so we started feeling that this is very unfair and unjust. During that time many students already started Uprising in Burma, we also had our friends who were living in the city, and they started getting involved like nurses and teachers and women. So I feel that we have to join the movement because human rights protection needs to be promoted and we need to let the world know what is happening in Burma under the military oppression and unfair and unjust system,” said Dr. Cynthia.
Dr. Cynthia arrived at the border in 1989 and began living and working at a Karen military hospital. Trained by the Karen Health Department, she treated injuries, wounds, malaria, and malnutrition. Resources were limited, and if they couldn’t manage a case it had to be referred to a Thai hospital, which the patient could not afford. She also started noticing that her patients were no longer just Karen soldiers, but increasingly a large number of women and children.
With the help of others, she lobbied the KNU to expand their medical facility and services to treat all vulnerable people in need of care.
“It was very challenging in the beginning because the location of the facility was only five kilometers from the border. We were also very scared because we lived in this compound and none of us had legal documents. We were afraid that maybe the Burmese government and Thai government would come and catch us or arrest us. So we had to be very quiet in the compound.”
The compound consisted of six rooms: three for housing staff and . patients, one bathroom, one storage room, and one room to perform medical services, split up into corners. In one corner, they could be delivering a baby and at the same time across the same room, they could be amputating a leg.
Over time, Dr. Cynthia was able to build a relationship with the Thai government and became a sort of surveillance and referral center. If patients needed more specialized care, the clinic could refer them to the Mae Sot Hospital. Here, Karen health care workers from Mae Tao Clinic could follow-up with their patient’s treatment and ensure services were still being provided at no cost through Mae Tao’s own funding.
Word began to spread about Mae Tao Clinic and its affordable health services. Soon, not only were internally displaced people from Karen State or refugees from the nearby camp traveling to this clinic from Burma, many migrant workers and other vulnerable people from Burma and Thailand who could not afford the Thai government services also began seeking treatment.
Finally, with further financial support from various organizations, Dr. Cynthia and her team began expanding the clinic. Thirty years later, it is a compound of various buildings providing a wide range of services, including child health, general primary care, reproductive health, non-invasive surgeries, HIV/TB screenings, and vaccinations. The clinic has a cafeteria where free food is provided for patients and staff, a large covered space with many beds for those staying for treatment after making long journeys from Burma and across Thailand, a reproductive health unit where on average five babies are born every day, and a birth registry where every newborn is registered with the Thai government. The registered children are not considered Thai citizens, but they can receive free health care and education in Thailand.
In the clinic’s infancy, Dr. Cynthia and her team developed medical records, but she noticed there was a gap in the information captured: It wasn’t comprehensive of all cases, because data collection had been focused on primary care. She noticed the clinic was treating a high number of women’s health and reproductive health cases, but no mention of this was in the data. She became interested in seeing the numbers of pregnancies, abortions, whether they should refer patients, and what particular conditions they should be referring. She noticed that more and more women were coming to her with abortion complications and unplanned pregnancies, and she had no information to draw on to develop related programs.
In 1997, a non-profit organization (NGO) working on women’s health collaborated with Mae Tao Clinic to support maternal and child health programs. With additional funding support from this new partner and other volunteer organizations, the Health Information System was born.
“The Health Information System is the collection of data for the monthly report because before we can make analysis, we need to put together all the data from each department. Every week, we collect all the log books and enter the daily recorded data. We look at the trend of the patients for each week and store all the data in the computer system. These are the working processes of HIS,” said Naw Has Moo Moo, member of the Data Management Team.
The Health Information System working group is divided into four teams: the Mobile Backpack Team, Mae Tao Clinic, Burma Medical Association (BMA), and Karen Department of Health and Welfare (KDHW).
Dr. Cynthia is one of the founders of the Mobile Backpack Team, which was launched in 1999, soon after the health center was established, in response to the thousands of displaced people throughout Burma who were still not receiving adequate health services.
“The Burmese government attacked many villages and many people become displaced. Some health workers fled to Thailand, began living in the refugee camp as refugees. Some wanted to stay and their family does not want to move to Thailand or some area. The Thai government does not allow them to cross the border. We had to start creating a network of the health workers in the community, so we started with 35 teams to start delivering primary care services for malaria, pneumonia, diarrhea,” said Dr. Cynthia.
The Mobile Backpack Team gradually expanded its network and is now operating over 100 teams providing health care services in Burma. The main health care services it provides are treating common diseases, health awareness programs, and child and maternal health care. Mae Tao Clinic has been its main partner all these years, providing trainings from basic to advanced-level health care and referrals for patients in emergency situations who are crossing the border into Thailand.
“The places where we work are very far to travel. We also try to provide a lot of services for child and maternal health care. Because the place is very far, it is very difficult when we have emergency patients. There is also shortage of experienced medics and midwives,” said Saw Win Kyaw, Director of the Mobile Backpack Team. “Under the leadership of Dr. Cynthia Maung, we developed programs and provide education for pregnancy care prior to birth, before they come to find us. We have worked a lot on reducing the maternal death rate and we have seen a lot of improvement with that. We can tell it exactly by numbers in records.”
The Health Information System teams work together in collecting information and making sure that it is comprehensive. Every six months, the Mobile Backpack Team collects information on diseases and inputs that data into the shared computer system, where it is then analyzed along with the data from all other teams. Collectively, the teams discuss the results and plan programs for addressing the most common source of disease burden afflicting this vulnerable population.
“Without information, we cannot share among us, we cannot share our resources and capacity and which capacity we need. Because the data show that we need to improve these services and we need to identify the priority area for the next three or five years for intervention, how to engage with the government, or how to mobilize the community. The data is very important to make sure that the policy makers and the community leaders and the health workers use resources effectively,” said Dr. Cynthia.
A glimpse into this data system reveals staggeringly high maternal mortality in the region. Mae Tao Clinic data show maternal mortality estimates in Eastern Burma are three times higher than national estimates cited in the Global Burden of Disease Study, and 24 times higher than estimates for Thailand.
These data demonstrate the compelling need for safe and free services provided by the Mae Tao Clinic’s reproductive health department.
The reproductive health unit is a large building with one room for deliveries, another for primary maternal health care, and a neonatal intensive care unit (NICU), while the rest of the space is taken up by many rows of beds filled with expectant mothers or mothers who have just given birth and their babies.
Ni Lar is a 20-year-old woman from Myawaddy, Myanmar – close to the border of Thailand and Mae Sot. She came to Mae Tao Clinic after going into labor and losing consciousness at home. She was surprised to awaken and find out that not only had her husband and family helped to transport her over the border to the clinic, along with her two-year-old daughter, but that she had given birth to twins. Having never received prenatal care or an ultrasound, she had assumed it was only one baby. The premature twins were now in incubators receiving care from staff at Mae Tao Clinic.
“We see that most of the mothers that come here have issues like having many children and if they deliver their baby back in Burma, it is costly for them,” said Lay Lay, head of the Mae Tao Clinic Reproductive Health Unit. “Some of them also don’t understand Burmese language very well and they told us that they don’t understand information being explained to them very well, like here. Here, we are same ethnic people from Burma and here we don’t talk about cost, so they come here.”
Moe Moe is a 23-year-old patient who is also from Myawaddy. She was pregnant with her first child when she traveled three hours across the border to Mae Tao Clinic for delivery. After struggling with financial difficulties, she decided the clinic would be her best option. Because her husband is a migrant worker and her in-laws weren’t well, Moe Moe had to travel alone with only the help of a 17-year-old patient caretaker she hired. It was emotionally very difficult for her not to have the same support as the many other women in the unit surrounding her.
“When I get home, I am not sure if I would be fine like this because I don’t have any adult to guide me there. When I get home I will have to stay with the same patient caretaker here and my husband is travelling, so I am worried for myself and for the health of the baby too,” said Moe Moe. “The nurses from the hospital can help explain how to take care of the baby. I like it here. When I am discharged from the clinic, I will go back home and when the baby or I am not feeling well, I plan to come back here for treatment.”
After her successful delivery, Moe Moe’s child was registered and given tuberculosis and hepatitis vaccinations for little cost.
“Without this clinic, there will be helplessness for many patients and they would face huge difficulties. The difficulties will not be just for the patients but also their families – it will be a life-threatening situation. For many people they don’t know any other place to seek medical treatment, they only know this clinic and keep their hope on this clinic. The clinic also provides free services, so they come here, they don’t know other hospitals. If the clinic is not here anymore, many people in this situation will not know where they could turn to,” said Lay Lay.
The Mae Tao Clinic is celebrating its 30-year anniversary and is continuing to find ways to ensure that all people not only have access to health care but are accounted for.
“Sometimes, the government has a national plan, but it does not include the undocumented or stateless people. Sometimes you show the data in the national level is getting better or improving, but it does not include the data from the internally displaced or undocumented,” said Dr. Cynthia.
Everyone, all over the world, deserves to live a long life in full health. This is the guiding principle of the Global Burden of Disease (GBD) study and it is what Dr. Cynthia and her team have exhibited through the work they do. The GBD study believes that in order to achieve this goal, we need a comprehensive picture of what disables and kills people across countries, time, age, and sex.
“We have to have the standard life for all the people regardless of the status or regardless of the men, women. We have to make sure that everybody has access to essential health care through the collaboration, and that work we cannot do alone ourselves,” said Dr. Cynthia.
In order to align health systems with the populations they serve, policymakers first need to understand the true nature of their country’s health challenges – and how those challenges are shifting over time.
Strengthening the relationship with both the Thai and Myanmar governments is a primary goal for the clinic. Cross-collaboration would allow for a more comprehensive health approach for the mobile and displaced population.
Dr. Cynthia and her team are working to ensure that the most vulnerable people, who often go undocumented, are being included in this picture of health and receiving the care they need.
“Universal health coverage is the right of all people regardless of the gender or age or nationality, so on the border, we have to work together for access to affordable quality health care for the entire mobile displaced population,” said Dr. Cynthia.
David and Barbara Roux established the Roux Prize in 2013 to award innovation in the application of Global Burden of Disease (GBD) research. The prize recognizes the person who has used burden of disease data in bold ways to make people healthier.
Mr. Roux is a founding board member of IHME and, over the past decade, he championed IHME’s most ambitious project, the updating of the Global Burden of Disease. And he encouraged IHME, as the coordinating center for researchers around the world, to find ways to make the information more useful, so that it would actually have an impact on the ground.
Since the first GBD publication in 1993, GBD data have been used in a wide variety of ways to inform better policymaking at the local and international levels. Mr. Roux wanted to reward that kind of evidence-based innovation and to encourage even bolder attempts to improve population health through better measurement of disease burden.
The Global Burden of Disease (GBD) is a systematic, scientific effort to quantify the comparative magnitude of health loss due to diseases, injuries, and risk factors. In 1993, the original GBD study was funded by the World Bank and featured in its landmark World Development Report 1993: Investing in Health. Co-authored by Dr. Christopher Murray, now Director of IHME, this study included estimates for 107 diseases and injuries and 483 nonfatal health consequences in eight regions and five age groups.
Now an ongoing enterprise with annual updates, GBD is an international, collaborative effort with more than 3,000 researchers in over 130 countries, led by IHME. Results are regularly published in peer-reviewed journals for more than 300 diseases, injuries, and risk factors, by age, gender, and country for 195 countries from 1990 to present. For more information about GBD, visit IHME’s website.