ПОИСК ПО САЙТУ 
поиск по ресурсному центру To protect the rights of a particular group, its representatives have to unite and defend their interests. But what if the concerned group is HIV+ children? Parent communities in different EECA countries have been working for a long time, but this year they have established a union and formulated their goals. Kanat Alseitov, co-chair of ECUO Parents Union (Kazakhstan) and the President of PF “Balakay-Shymkent” spoke about this process in an interview with eecaac2018.org.
My name is Kanat Alseitov. I’m 47 years old. I’ve been working with HIV issues for eleven years, since 2006.
In 2006, when there was an outbreak in Southern Kazakhstan, my 8-month-old child (and these are my late children) has got a hospital infection. Since that moment, I had to openly and actively engage in this topic. Unfortunately, only our family is open to these issues yet. There are one more couple of parents, but they participate occasionally and are at the beginning of the journey in general.
During 11 years a lot of things have happened. Both failures and very good positive moments. I was told:” Why don’t you calm down?” And I look at this epidemic, and I saw that in EECA countries the statistics are extremely unsuccessful: Russia, Ukraine. Kazakhstan also goes with leaps and bounds.
I’ve always been quite envious about adult PLWH communities, which can develop and be well represented on both international and country level. The leaders of these communities have access to decision-makers and state structures.
I participated in various unions in Kazakhstan: for more than 10 years I have been a member of the Kazakhstani Union of People Living with HIV, but I always dreamed that the parent community in our countries (the most closed community among PLWH, because of a double stigma – fear for children) to unite into a legal entity, and we could declare our special needs (both HIV+ children and adolescents, and their families have particularities in medical care, pediatrics, treatment, and overcoming discrimination), that is very influential psychologically, economically, and for the family budget.
Although as a CCM member, I always stated about our needs and requirements, but I didn’t get any support. Our problems were left out.
I’ve always been told:” You know, Kanat, state has already done everything for your child: you have branded treatment, an excellent hospital in your city, all social benefits, disability, monthly social payments and side effects sanatorium treatment…” And it’s true! My second profession is a lawyer. I went through the entire Kazakhstani legislative base, and found out that we have the right for all social benefits. Therefore, if in some place I meet the infringement, I immediately write a statement. And after apologies services become available. But my situation is an exception to the rules.
Kazakhstan is divided by regions. According to official statistics, there are 434 HIV+ children in the country, 227 of them are in southern Kazakhstan, Shymkent, 149 of them were got a hospital infection. Other HIV+ children are children born from HIV+ parents. About 80 infection cases are not identified.
My advocacy efforts have always been aimed at ensuring all children with equal access to medical, social and other services. In Shymkent it turned out to be done, because parents worked on it.
But, unfortunately, in other cities families do not have such access to necessary services.
For example, in Almaty about 50 children have HIV, and to my shame, only last year I found out that they don’t have such access. Although at all meetings our officials said:” Kazakhstani children are provided with everything,” and it turned out that only several children patients in Almaty have access to disability, and the rest don’t have anything else except ART.
Last year, Almaty AIDS Center doctors asked me to conduct a workshop. I enthusiastically came to tell what we’ve achieved in the field of adherence, opening the status, and the school of leadership. 12 parents came to the meeting, 4 of them were grandmothers and 1 great-grandmother. In one third of the families that visited workshop parents had already died from AIDS, and grandmothers take care of children. I saw hungry children and poverty. Then I began to ask:” What’s the matter: do you receive benefits, allowances, pensions?”
They looked at me as I came from another country. I started to ask doctors, and they said: “No, these families do not get anything from the state, except for ART, because HIV+ children are not given a disability. It’s only in your Shymkent, but other children in Kazakhstan don’t have this status. “
Meeting with families, I was convinced that they do not receive state support, and as a result, HIV + children live for their grandmother’s pensions. Can you imagine what pensions these grandmothers have? So, there is a primary problem to take a bus to the AIDS center, take tests and get ART.
I am very happy that we managed to stir parents in the self-help group in Almaty. Activists appeared and started to work on rights advocacy. Time will show us the result.
Discussing this situation with colleagues from ECUO, we’ve found that the problems we faced are the same in other EECA countries. We decided to meet in Ukraine on March 23-24 this year to work out solutions.
So we, the HIV+ children’s parents from Russia, Moldova, Kazakhstan, Ukraine and the Baltic countries and parent organizations representatives, met and signed the memorandum, deciding to act in the area of advocacy and HIV+ children, adolescents and their families’ rights protection.
The discussion lasted for two days, and we identified three main tasks of our Union:
- Medicine-related advocacy, i.e. high treatment standards and quality drugs in accordance with the European treatment protocols. There were disputes “brands or generics”, and we decided that we don’t say “brands or generics,” we say “high standards of treatment based on new schemes and quality drugs,” at least prequalified by WHO, because of different financial accessibility in EECA countries. In Kazakhstan, we have branded drugs, brands are available for us, but in other countries only generics are available, so then we insist generics to be prequalified: this is the minimum to protect children from a poor-quality product.
- Access to social services through disability appropriation and funds allocation. Ensuring the socialization mechanisms availability in medical and social spheres through funds provision. So, I heard that in Russia some parents do not apply for disability and social services because of fear of status disclosure and discrimination, i.e. there is such a problem.
- Socialization of children at school, within educational system through the mobilization of adolescents and parents themselves to give them more optimism and confidence to face challenges of stigma and discrimination. For example, our family always openly and in advance conducts training for teachers and parents about tolerance for HIV+ children. As a result, last year in May for my child’s 10th anniversary, all classmates came to our house and had fun. I was happy and glad that all efforts were not in vain.
There are two positional statements from ECUO today:
1.On Efavirenz (limiting the mass use of this drug and transferring it to a reserve / backup scheme)
- Adoption of treatment protocols based on the European Treatment Protocols of 2016 in our countries.
We are creating ECUO Parents Union so that in each of our countries parents could contact decision-makers to achieve high standards of services. These standards clearly need to be raised. We can see the tendencies: HIV is expanding, and, unfortunately, a number of HIV+ children increase. I heard that in Russia there are about 9500 HIV+ children. What happens to these children? What schemes are they on now?
Unfortunately, we always have a lack of information. For example, for 11 years we’ve been on the first scheme of combivir + aluva, observing 100% adherence. The doctors told us that we should stay on the same scheme as long as possible. And so we had been doing it for 11 years, and it turned out that the therapy had stopped working. Less than 34 copies of viral load, suppression is present, CD-cells are around 700-800, but there are side effects, that we saw last year: nausea, diarrhea, rash. I created a concilium, and the doctors answered: “Yes, the therapy is done.”
Than we found out that the average length of taking such therapy is six to seven years, and we stayed eleven! And here the official decision is made: we pass to dolutegravir + tivicay- integrase + kivexa inhibitors in lamivudine and abacavir monodrugs.
This is the second child in Kazakhstan, whose first scheme stopped working, and we switched to the second scheme, enhanced with an integrase inhibitor. It will be available in 2018 through the republican budget, and this is also Shymkent parents’ advocacy efforts result. Today, we are on this scheme for the third month, and already passed side effects. Further, when my child’s weight goes over 40 kg, I will seek a one-pill-a-day therapy regimen, this will be TRIUMEQ.
I openly show through my facebook page how I advocate access to the quality treatment for my child to give an example to all parents. If you are persistent and act in accordance with the legislation and treatment protocols, go through all these doctors’ conciliums, then the free of charge services will be available. The decision is made at the local level.
We plan to exchange such examples of advocacy in ECUO Parents Union, as to ensure children and adolescents with innovative treatment schemes in our countries, state should allocate funds and work with pharmaceutical companies directly without mediators.
I agree that such work is hard. Sometimes it is terrible for parents, that relatives will know about all HIV issues, but it must be done so that we do not lose children, do not get side effects and disability. My advice to parents is “Do everything today, so that tomorrow our children will bury us, and not vice versa!”
By Tatiana Evlampieva
