Since about seven years ago B.Battseren (31) acquired a new routine in her life - every odd day of every week she gets up in the morning and meticulously prepares for her visit to the hospital, for haemodialysis. This complicated medical procedure of detoxifying her body artificially due to kidney mal-functioning became her next step of struggle with diabetes, a disease Battseren has been struggling with for the past 22 years.
“I was diagnosed with diabetes, type 1, when I was ten years old,” says Battseren, or Batushka in short. “It was scary then it became embarrassing as now I was considered an outcast due to being different from all the kids in my class and even in my school.”
Batushka was teased, her insulin shots were stolen, and she was branded a drug addict as she carried syringes in her school bag. At the onset of the disease she lost weight to 18 kg. In the high school dramatic changes in her appearance when one day she looked fit and the other day chubby, led to unpleasant reactions from her teenage classmates. Except for the supportive and loving family, her parents and two siblings, Batushka’s circle of supporters has grown in time: she acquired friends among children with diabetes - all patients of the National Mother and Child Health Centre.
“It was a rare disease in 1970s and 1980s. In mid-1990s in the NMCHC we have had about 20 children with diabetes from all over Mongolia. The numbers have gradually increased during these years and currently we are treating 91 children,” says Dr D. Chinzorig, the Head of Department of Nephrology and Endocrinology of the NMCC.
Diabetes, uncommon some 20-30 years ago in Mongolia, now is taking tall on the young and old, men and women regardless of occupation, education and location of residence. The WHO supported STEPS Survey of 2005 showed increase in diabetes from 3% in 1999 to 7% in 2005. According to the WHO STEPS Survey of 2013, 7% of the population of almost 3 million was detected with apparent diabetes and 8% with hidden diabetes suggesting that 1 in 7 persons were ill with diabetes. According to the Ministry of Health and Sports Health Indicator statistics the diabetes rate has increased by 6 times and diabetes-related mortality by 4 times in 2014 in comparison to 2005.
“A worrisome increase of diabetes is largely connected to Mongolia’s transition to the open market economy where availability and accessibility of non-healthy foods have been increasing uncontrollably whereas awareness of the population about risks of developing diabetes is very unsatisfactory,” says T. Khulan, the Head of the Professional Management and Policy Implementation and Coordination Division of the Ulaanbaatar City Health Department, an endocrinologist herself.
With increase of diabetes health professionals warn about risk factors for developing the disease as unhealthy diets, consumption of alcohol and tobacco and lack of exercise. WHO supported STEPS Survey of 2013 revealed that half of Mongolia’s population is overweight or obese. The same survey indicated that over 96 percent of the entire population consumes less than WHO-recommended five servings of fruits and vegetables per day and over 66 percent of the population does not exercise regularly. Moreover, the same study indicated that half of the male population of the country smokes.
Based on the outcomes of these studies WHO supported the Government of Mongolia in revising the guidelines for early detection and prevention of complications from diabetes and focused on the capacity building of health workers especially of the primary health care facilities.
Diabetes is an expensive disease
Batushka spends about 400.000 MNT (200 USD) per month on her treatment including purchase of insulin and post-haemodialysis restoring treatment. She lives with her parents who are retired. Her farther is a former truck driver with higher than average pension of 500.000 MNT a month (250 USD) and her mother, a former service personnel in a civil service, gets 350.000MNT (175 USD) of pension per month. Batushka herself receives a state disability support worth of 126.000 MNT and 30.000 MNT monetary aid for purchase of medications. Her father receives another 48.000 MNT as a “guardian of a disabled daughter”. Batushka’s treatment and medication expenses constitute almost half of the family’s budget.
“There are many new and smart treatments for diabetes available on the market but I cannot afford anything fancy like the pumps that my close friend who lives in France has. So I have no other choice but to stick to the old, not very comfy medications,” says Batushka.
She poses for the moment and adds: “If not for occasional financial help from my siblings and if not for their endless love I may not have lived till now.” She names her friends from the NMCHC who she played with as a child and who she kept in touch for years but who have gone by now one after another: Altanbaatar, Bayarmaa, Saruul, Ulziidelger. She recalls that some of them could not afford buying insulin shots and she shared her stock with them.
“We were taken a very good care of at the NMCHC. But as soon as we turned 18 we had to leave the Centre and register at the district’s hospital. Then I realised that we now were virtually on our own as the state hardly is able to cover expenses of our medications: we get about 2-3 pieces of cheapest insulin instead of 6-7 we need per month”, says Batushka.
A retired kindergarten teacher O.Davaajav, who has the type 2 diabetes, also says that the family earnings are all spent on fighting her disease. “My children cannot even afford to save to buy a separate accommodation for themselves,” says O.Davaajav.
According to the local health professionals’ observations Mongolia now is in a transition stage of the disease taking over the poorer population. “Up until now relatively well-off people suffered from diabetes. But lately diabetes is attacking the lower income populations who are unable to afford this expensive disease,” says S.Sainbileg, an endocrinologist and lecturer at the Mongolian National University of Medical Sciences.
“Diabetes is a disease with a very high burden on patients, their families and the country’s economy. And diabetes is a disease that may end up with serious complications if not diagnosed and treated early. Hence we applaud to the Government of Mongolia for enacting preventive policies through introducing free of charge blood sugar rapid tests to every person with health insurance aged 40 years and above,” says Dr Soe Nyunt U, WHO Representative in Mongolia.
“We are well aware about all the financial hardships that people with diabetes go through especially in times of an economic crisis in the country,” says N. Tsogzolmaa, the officer in charge of policy implementation regulation on noncommunicable diseases at Mongolia’s Ministry of Health and Sports. “The Government is looking at every possibility to ease the burden of diabetes on people. Just very recently, in the end of March, the Government made a decision of covering over 50 percent of out-of-pocket expenses on four types of oral diabetes medications from the Health Insurance Fund.”
The Government of Mongolia has endorsed the “Second National Programme on Prevention and Control of Diseases caused by Unhealthy Lifestyles 2014-2021” in 2014 and the Mongolian parliament adopted last February the “Mongolia’s Long Term Sustainable Development Concept 2016-2030” that aims at increasing average life expectancy to 78 years of age “through improving the living environment for the Mongolian people and enabling them to lead healthy lives.”
Dr. N. Tsogzolmaa stresses that the state’s policy is to actively and inclusively engage individuals, families, communities and organizations into promoting healthy lifestyles and educating the general public on preventable noncommunicable diseases risk factors.
“I will live despite all odds”
Batushka lost her sight suddenly, one day after the haemodialysis procedure. “It was the moment when I wanted to die,” says Batushka, “I could not cope with this total darkness I’ve slid into. And I know that many of my friends felt this way when they faced diabetes complications.”
Batushka overcame this difficult phase in her life thanks to the dear people, her immediate family. She couldn’t betray their trust in her. She started writing poetry. She wrote about the disease that had killed her childhood desire to become a ballet dancer. She wrote about the disease beating her youthhood wish to become a TV host and director. She wrote about how diabetes prevented her from studying in a university. And most importantly she wrote that nothing could beat her will to live. Batushka has selected over 300 poems for publishing: poems about living and dying, poems about love and betrayal, poems about human strength and human friendship.
“I do not want to ask for help. I hope that my poems will sell and I’d be able to buy a better treatment”, says Batushka.
But she also has one dear secret that she decides to share – she wants to have a baby with her fiancé who she met 5 years ago. “My friend with diabetes who lives in France just gave birth to her second child. Miracles are possible in this world. I won’t be able to become a mom here, in Mongolia, as the health system isn’t that advanced unfortunately. But if I ever manage to get to France I will fulfil the wish I cherish,” says Batushka with a firm smile.
