Baktygul Kalbaeva is a young, energetic and committed lawyer and advocacy specialist, working for the Harm reduction program of the “Partnership Network” Association. Under the UNDP / Global Fund project, she consults and trains healthcare workers, NGO employees, representatives of key groups and patients on human rights. In this interview, she talks about an important part of her job together with the Soros Foundation: obtaining compensations for children, who were infected with HIV in state medical institutions.
Please tell us about the children with whom you work.
Between 2005 and February 2021, 403 HIV positive children, infected in health institutions, have been registered in Kyrgyzstan. They mostly fell sick in 2005-2006, in hospitals in the southern part of the country. This was a period of outbreak of HIV cases among children due to the insufficient processing of medical instruments and the non-compliance with infection control requirements.
All of these children have had to live with HIV since their youngest years and to adapt to this diagnosis, which is not easy. Now, there is an efficient therapy for HIV, thanks to which children can be healthy and have families, and can be happy despite their HIV status, providing they are adherent to the treatment. But this therapy is life-long, and such children also suffer due to fear, stigma and self-stigmatization. They need medical, social, and especially moral support.
In the course of my work, I heard a lot about the fears of these children and their families, and about the difficulties they experience in all aspects of their lives. There are children whose parents left them in the care of their grandmothers, aunts or uncles; that is, those who are meant to be closest to them turned their back to them due to their HIV status. I spoke to one grandmother for example; she is looking after a child who was abandoned by his parents because of his HIV diagnosis. They divorced and both left, and gave their child to his grandmother. This grandmother does not have guardianship or any other documents. In this case, we cannot even help them obtain compensation, since we need power of attorney to take action. I advised this woman on how to obtain guardianship, but the boy will soon turn 18, so she decided to wait for him to be able to ask for help on his own. This also will not be an easy task, since he doesn’t have a passport, just a birth certificate, and since he will need to present his parents’ passports and consent in order to obtain a passport of his own.
How do you help these children?
We are trying to help them obtain compensation from the state. Up to their 18th birthday, these children receive monthly benefits of 6000 soms. Some of them have also obtained a one-time compensation through court, mostly in the amount of 50,000 soms.
But they can only obtain this assistance until they turn 18, after which no help of any kind is offered. Many of these children are now 14, 15 or 16 years old, and some have already reached majority. But HIV is a lifelong illness. Many of these children would like to continue their studies and dream of a full-fledged life.
In December 2020, for the first time in Kyrgyzstan, the mother of a child, who had been infected with HIV in a medical institution, won a case in court and a compensation of 2 million soms. This precedent has given hope to other families, and they reached out to us for assistance.
These parents had previously repeatedly reached out to the government on their own, but all of their appeals have remained unanswered. Despite the important number of children living with HIV, since 2005, law enforcement agencies have only initiated around 50 criminal cases, of which 3 were combined into one proceeding, and only 4 criminal cases against 21 health care workers were accepted and sent to court. The court acquitted 1 person, convicted 2 people, exempted 4 people of punishment following an amnesty, 6 following the reconciliation of parties and terminated the case against 8 people upon expiration of statute of limitations. 43 of the criminal cases were terminated according to article 221, part 1, paragraph 3 of the Criminal Code of the Kyrgyz Republic. Many of these parents told me that they had been intimidated by discrimination, they had been given false information and had been forced to hide the fact that their child had been infected in a health center, thereby the perpetrators were able to avoid liability.
All in all, health care workers have not received due punishment for the harm they have caused to the health of these children, who now have HIV. These parents previously appealed to various state structures, to courts, and organized demonstrations, but, according to them, nobody is trying to solve this problem. The government gets off with small allowances, while doctors avoid liability. In this situation, the state structures, who do not pay enough attention to the problem of nosocomial HIV infections, are to blame.
That is the reason why we decided to help these parents address letters to state structures, and bring some of these cases to court for obtaining compensations.
What exactly are these parents demanding from the state?
Their first demand was for the government to provide life-long allowances to these children. Some of them also wanted for the government to give them free housing, etc. But given the economic situation of the state, we proposed another approach, to which they agreed.
Our proposal was to include these children in the category of beneficiaries, meaning that they would have the right to obtain scholarships for free education in secondary and higher institutions out of competition, as well as to ask the government to include funds in the 2022 budget for one-time compensation payments to these children. In fact, the law of the Kyrgyz Republic of August 17, 2020 “On HIV / AIDS in the Kyrgyz Republic” entitles people, who have been infected in medical institutions, to a one-time compensation of no less than 100,000 soms. This law should come into force on March 1st, 2022.
A letter from our organization was sent to the Ministry of Health of the Kyrgyz Republic, the Jogorku Kenesh of the Kyrgyz Republic, the President of the Kyrgyz Republic, the Government of the Kyrgyz Republic and the Ministry of Education in March 2021, and was signed by 57 legal representatives of HIV-infected children from the Nookat district of the region of Osh.
Various structures answered that the mechanism for the payment of these compensations had not yet been designed, and, concerning education, that the law does not allow the issuance of scholarships. Therefore, it is necessary to change the law. But since all of the laws of the Kyrgyz Republic are currently being inventoried, following the President’s decree, this issue has been postponed.
I would like to mention, however, that, at the initiative of the “Partnership Network” Association, with the support of the UNDP and other development partners, a working group for the inventory of the laws of the Kyrgyz Republic related to healthcare has been created following a decree of the Ministry of Health and Social Development, and we are trying to ensure that the regulations on compensations for these families will be maintained.
Additionally, we are helping those who have not previously received compensation by court order to file a claim. To date, we have filed two claims on behalf of three parents to obtain compensation for moral damage in the amount of 1 million soms. The final amount of the compensation will be determined by court.
Could you please tell us more about these children?
The cases in which we are now involved concern two children, who were diagnosed with cerebral palsy in their childhood. They were simultaneously in the same hospital for treatment and were infected with HIV there. These children were infected with HIV because healthcare workers reused previously used catheters and syringes. Can you imagine, these children have both cerebral palsy and HIV... The third child, for whom we have filed a claim, has the third stage of HIV infection, constant fever, diarrhea ... He is in constant pain. These children are now 16 years old.
These cases are very important not only for the children in question, but also for all of the others. They have hope for justice. At the beginning, only 5 or 6 families contacted us, then they found each other's number and kept writing, asking for help, explaining that they had financial problems, etc. Following the first meetings, we went to Osh together with some lawyers of the Soros Foundation, where we met with other parents who wanted to get advice. More than 80 families have contacted me so far.
Which difficulties did you face?
An important problem for us and for the parents is to gather all of the necessary documents: medical cards, expertise, legal and court documents… Some only have one document and, based on it, we look for others in the court archives, we turn to the Prosecutor’s Office and so on, and, in this way, we get all of the documents on our own. Other families do not have any documents at all. That is why we flew to Osh and visited courts and other structures, in order to understand what had happened; we had to look for the documents themselves. Gathering all of these documents took a lot of time.
In one of the hospitals, the documents have been destroyed during a flood – at least that’s what we were told. Many cases weren’t reviewed because of this.
But what is more problematic is that many parents themselves destroyed these documents. They are so scared of discrimination on the part of their neighbors, relatives, society and other people that they themselves burned the documents or threw them out. They hide from everyone that their child has HIV. Their relatives do not know about this, daughters-in-law do not know this, and even brothers and sisters may not be aware. Sometimes, I can’t even understand how these children take their treatment in such circumstances. As I said, they don’t even have any documents at home, because they’re scared that someone may find out that their child has HIV.
We would like for them to give an interview while the trial is ongoing. This would help. But the parents refused, even anonymously. They are scared that someone may recognize them. They say: how will I marry my other children afterwards? They have such fears. Unfortunately, stigma and discrimination against people living with HIV is still an acute and destructive problem in Kyrgyzstan.
Why is it important for these children to receive compensation and recognition?
It isn’t big money, but for people, who live in the regions, it is still a significant sum and it could help with education.
These children were infected in medical facilities, and the government should be held liable for this. They will have to live with this illness for their entire lives, and they should receive at least some sort of moral compensation for this. Of course, money will not solve the problem, but, in any case, they will get some sort of psychological satisfaction from this.
I’ve often heard from parents that the state has abandoned them, that the state doesn’t take care of them. The children also are in a similar psychological state. Obtaining compensations would probably help them feel like they aren’t abandoned. This is all the more important in a context of stigma, discrimination and isolation, when children are becoming adults in a society, which often rejects them.
Contextual information: Around 400 children living with HIV, who were infected in medical facilities, are registered in Kyrgyzstan. To date, no treatment has yet been found to completely cure HIV. But the drugs available for people living with HIV guarantee a long and high-quality life. Modern treatment regimens are used for PLHIV, including HIV-positive children in the Kyrgyz Republic, and can be taken in the form of one tablet, once a day. For children under 5 years of age, medication is taken in the form of syrups and suspensions, which are easy to take. The legislation of the Kyrgyz Republic provides for social benefits for HIV-positive children under 18 years of age. Currently, this benefit amounts to 6,000 soms. In addition, amendments were made to the Law of the Kyrgyz Republic "On HIV / AIDS in the Kyrgyz Republic", within the framework of which, starting from 2022, a one-time compensation payment will be made for children infected in healthcare institutions, the amount of which will be at least 1000 calculated indicators or 100,000 soms. In parallel, the country is implementing measures aimed at combating stigma against PLHIV. UNDP and its partners actively support children living with HIV through medical, psychological, social and legal assistance and health education.