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Right to Life

On June 1st, International Children’s Day, we are thinking about how to give HIV positive children the right to a normal life.   Natalia Sukhova,…
дети и вич

On June 1st, International Children’s Day, we are thinking about how to give HIV positive children the right to a normal life.
 
Natalia Sukhova, Project Coordinator of the Healthy Mother, Healthy Child project:
 
“By the nature of my work I often talk with HIV positive children and their parents on important topics. Several parents – biological and adoptive – it’s hard to come to terms with the fact that their child, and maybe they themselves, have HIV. Therefore they are likely to believe in HIV denialism, conspiracy theories, and natural remedies, not only doctors. And therefore their children end up in intensive care with AIDS and a cell count of 20 (CD4-Lymphocytes).
 
Thanks to the fact that last year the Ministry of Health developed recommendations on visiting patients in intensive care units, parents can be together with their children. I see how this changes parents’ relationship to HIV, when they can see their children suffering with their own eyes.
 
When parents are with their children daily in the intensive care unit, they see all the medical treatment that takes place and they see how their child gets better over time and how AIDS slowly is defeated, and their point of view about HIV shifts. The parent or guardian becomes immersed in the child’s condition and sees that the child is in pain, they take care of the child all night long… No nurse has the ability to feed a child like his or her parent, even if that parent is an AIDS denier. In my experience there was a case where it was impossible to save the child: he was already at the terminal stage of AIDS. His death was a real wake up call to other parents who were in neighboring rooms and saw the family’s grief. As a result, they asked the doctors to immediately start giving the child ART although before that moment they completely denied the existence of HIV…
 
Another important issue related to HIV positive children is that these children have the right to relax at any sanitorium or camp as they wish. In any. But there have been cases when a child was refused entrance to an sanitorium based on the excuse that allegedly they “didn’t know how to store the medicine”, or that “our sanitorium is only for HEALTHY children” and for other, no less ridiculous reasons. These refusals are completely illegal. The summer season begins and HIV positive children head off to sanatoriums and it is important for their parents and guardians to remember that no one can refuse to let them stay in these institutions.
 
The rights of children in the Russian Federation are defended by the federal legislation “About the main guaranteed rights of children in the Russian Federation” from the 24th of July, 1998. The law establishes the main guaranteed rights and legal interests of children as determined by the constitution of the Russian Federation with the aim to develop the rights and socio-economic conditions to realize those rights and legal interests of the child. The government recognizes childhood as an important step in the life of a human and based on the principles of the priority to prepare children for a full life in society, and their development of socially significant and creative activity, instilling high values of morals, patriotism, and citizenship.
 
It is also crucial to speak with your children about taking ART. Recently I was speaking with a 13-year-old girl who came to camp with a stock of treatment for two weeks, but while she was there, decided not to take her medication. Simply not take it, that’s it. She was frightened by the additional attention from her peers… and when she returned home from the camp, her viral load had increased, and we can only hope that the virus hadn’t become resistant.
 
Therefore: parents, talk to your children about taking ART and taking care of their health!”
 

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