Kyrgyzstan has ratified the UN Convention on the Rights of Persons with Disabilities, and the country has a valid state guarantee programme for persons with disabilities that guarantees them access to healthcare services. However, in fact, persons with disabilities do not have access to any guarantees.
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А Bishkek resident Liudmila Lobasenko raises a son. His father intentionally distances himself from the upbringing of the child. When Ruslan was six, he was diagnosed with “autism”. The diagnosis sounded like a verdict to the woman.
“I lost my balance. I didn’t know where to go and how to move on,” she recalled trying to hold back her tears, which she always has when she speaks of her son’s disease.
He was a long-awaited child, her last chance to become a mother. Liudmila Lobasenko gave birth to him when she was 43 and hoped he would be her support, her beacon of light and her life. So it happened. Now her life is totally devoted to Ruslan. Every second of their days is scheduled – activities, treatment, procedures…
“A state guarantee programme? What is that?” even Liudmila, who had worked at the customs office all her life, an intelligent and knowledgeable person with a degree, doesn’t know that the state, according to the law, takes care of its citizens and guarantees them access to healthcare.
The PGG is available for the following categories of PWDs:
- Dismembered and injured during military service;
- PWDs with disability groups 1 and 2 due to work-related injury, occupational and general disease;
- PWDs with sight and vision impairments;
- PWDs from childhood;
- PWDs under 18 years of age.
PWDs have a right to free of charge healthcare at a polyclinic and at hospitals.
Guarantees for the elect
The expert in evidence-based medicine, Bermet Baryktabasova, explained that the state guarantee programme in Kyrgyzstan is not available for all, that’s why doctors don’t speak about it, and patients are not aware of it.
“The state guarantees affordable healthcare by law, while orders of the Fund of Compulsory Medical Insurance (FOMS) and those of the Ministry of Health hinder the implementation and create a lot of unsurmountable obstacles. And the situation is like in the Survivor show: whoever overcomes all obstacles will get the medicines, free treatment and compensation of medical procedures. PWDs are not capable of it so they are left out beyond the state guarantee programme,” Baryktabasova said.
Liudmila Lobasenko tried to use the services provided by the state. However, the family practitioner group told her that she had to undergo all medical tests and bring a medical certificate to them. She failed to overcome this obstacle because her hyperactive child feels bad in crowds of people (in polyclinics with long lines). Therefore, she dropped this idea.
As the majority of mothers who have children with disabilities, she goes to private laboratories and private diagnostic centres. She orders medicines abroad as the majority of medicines prescribed are not available in Kyrgyzstan.
The state guarantee programme emerged in Kyrgyzstan in 2001 as a pilot project in a few regions, and then was made available in the whole republic. Its purpose is to improve access to basic medical services for the most vulnerable groups and to improve efficiency of healthcare services provided to vulnerable groups.
The diseases that qualify for benefits under PGG are: acute infarction, tuberculosis, asthma, terminal cancer, mental disorders (schizophrenia and affective disorders), epilepsy, diabetes and haemophilia. Patients with such diseases must have free access to medicines.
According to the international classification of diseases (ICD 10), affective disorders are various disorders of mood (depressions, manias, bipolar disorders). The state guarantee programme doesn’t cover other diseases that are related to disability or leading mortality factors and causes of disability.
PWDs also get medicines under the Additional compulsory medical insurance programme and get 50 per cent compensation and also pay 50 per cent of hospitalisation cost. However, this system also doesn’t always work.
“We are aware of cases when patients who have a right to free healthcare services have to pay for them. However, we still cannot control the whole process,” said Svetlana Baitikova, press secretary of the Compulsory Medical Insurance Fund (FOMS).
According to Bermet Baryktabasova, the state guarantee programme is outdated in its current form.
“Its current form is not functioning; moreover, it is full of corruption risks. It is not advertised publicly. So, few people are aware of it. Moreover, neither FOMS, nor health ministry are interested in its wide coverage. FOMS says it’s health ministry’s policy, while health ministry says FOMS have all the money. 20 years have passed since then,” Baryktabasova said.
According to her, the situation of “fatal” diseases has changed a long time ago in Kyrgyzstan. Many diseases are not critical today and they need to be removed from the PGG to make resources available to support vulnerable groups.
“For example, no one dies from the ulcer disease anymore. The asthma is no longer fatal. We have learned to control tuberculosis and HIV. Diabetes also may be and needs to be controlled. However, only 3-4 drugs are allocated to 2-3 groups of mental diseases for a couple of quarters per year. […] PGG allocates anaesthetic drugs only for the fourth stage of oncological diseases, while no anaesthesia is equal to torture,” Bermet Baryktabasova said.
FOMS does recognise it and promises to analyse and review the programme this year.
“At first, we’ll collect and analyse data, involve the general public and experts. And we are going to amend the PGG in 2021-2023,” Baitikova said.
According to her, there are gaps in awareness – many citizens don’t know their rights.
“Now we attend state institutions and explain to people that they have a right under the state guarantee programme. Many of them become surprised,” she said.
They are also planning to develop leaflets that will be hanging on the doors of doctor’s offices in polyclinics and hospitals. They will list all services that should be provided for free to patients – reception of a patient, blood and urine tests, etc. They will also contain a hotline number of FOMS, where anyone can file a complaint.
Not for statistics but for the good…
Such notion as person year has been used in the world practice for a long time. It means the efficiency of treatment for the life quality of a patient. However, such researches are not carried out in Kyrgyzstan.
Elnura Boronbaeva, the chair of the Fund, declared the recent budget data of the Compulsory Medical Insurance Fund in mid-November 2019 in the parliamentary committee. According to her, the revenue for 2020 is set as 15 billion 745 million 829 thousand som (225.42 million dollars). It has increased compared to previous years.
For your information, the key sources of income for FOMS are the republican budget and social fund contributions.
The major part of medications’ cost, according to the FOMS report for 2018, is compensated by no means to disabled persons. The key recipients of the service are pensioners. 36 per cent of all prescriptions fall on them. Working Kyrgyzstanis (23%) are on the second place, and then follow children (14%). And only 13 per cent of medications are compensated to persons who receive social relief, including PWDs.
“2.5 million people get services from FOMS under the state guarantee programme. The PGG varies from few soms to the majority of beneficiaries to several thousand dollars to the minority and covers almost the half of population, both healthy and sick, vulnerable and non-vulnerable. Quality medical care has main qualities: fair, equal, affordable, effective, and safe healthcare. Valid PGG and additional compulsory medical insurance programme run contrary to these main qualities. This is a shame for both FOMS and ministry of health,” Bermet Baryktabasova said.
According to her, the state guarantee programme is a guaranteed vital healthcare to the most vulnerable people who have the unbearable burden of diseases and who won’t survive without government assistance. According to FOMS, the programme is divided into three sections:
- 30 categories of citizens by their social status (veterans of Afghan war, participants of Chernobyl operation, veterans of the Great Patriotic War, survivors of the siege of Leningrad, prisoners, PWDs, heroes of the April revolution, children, pregnant women, etc.);
- 16 categories by clinical indications (oncology, schizophrenia, epilepsy, asthma, etc.);
- insured citizens.
Kyrgyzstan allocates the least funds to healthcare compared to other CIS states. According to 2014 data of WHO, this amount is 215 dollars per capita. In Uzbekistan, it is 340; in Kazakhstan, it is 1,068. The least amount is allocated in Tajikistan, only 185 dollars per capita.
However, according to Baryktabasova, very expensive medications are being procured under PGG and additional medical insurance programme, although they have much cheaper analogues that cost dozen times cheaper in the local and accessible international drug market. The list of essential drugs and medical goods approved on June 6, 2018 includes 432 items of drugs and 50 items of medical goods. Sham medications have been excluded from the list, and now the list is 85 per cent compliant with the list recommended by WHO.
According to Svetlana Baitikova, FOMS has never been involved in procurements. Every hospital provides a list of drugs and medical goods they need and their cost, and the Fund only transfers money to the hospital’s account.
“There have been cases when doctors prescribe not the drugs that belong to the essential drug list, but the ones that are lobbied by pharmaceutical companies,” she said.
The issue of affiliated pharmaceutical companies is still existing. Although, according to Bermet Baryktabasova, it’s very easy to identify them by just looking at the list of suppliers who have been in the market for 20 years and more.
PWDs, unite!
According to experts, persons with disabilities should unite and demand that the state amend the state guarantee programme. The vulnerable groups and conditions and medical services that need to be supported by the state should be clearly defined; terms and amounts and many other things, and their treatment or rehabilitation schemes should be defined. Also, those categories of citizens that are no longer alive or that don’t need assistance of the state sorely should be eliminated from the PGG.
Moreover, according to Baryktabasova, they should demand that FOMS be fully transparent and open. Currently, there is no publicly available information about the number of people registered in the state guarantee programme. Respectively, there is no information about the number of persons who really received guaranteed services, in what forms and at what price. Cold facts provided by FOMS and National Statistical Committee are impersonal and don’t show the real picture.
In her opinion, emphasis should be placed on healthcare services that intend to prevent diseases: emergency care; maternity and childhood; leading preventable causes of death and disability.
Autism, which was diagnosed in Liudmila Lobasenko’s son, is not treated in Kyrgyzstan. Until 2017, this diagnosis was never made, so Ruslan was recognised as intellectually disabled person. Also, there is no official statistics regarding autistic people. However, in the west, the “autism” was diagnosed back in the 70s of the 20th century.
“Autism cannot be treated. I know it. I know probably everything about autism. And I keep on learning something new,” Liudmila Lobasenko said. “However, autistic people can be subjected to corrective therapy. That’s what I do.”
Ruslan attends a drama studio, plays sports, learns to use a computer. He has some progress in his development. And his mother hopes he will live a full and real life, yet not ordinary, when she is gone.
This article was prepared as part of the Giving Voice, Driving Change – from the Borderland to the Steppes Project.