HIV has long stopped to be a sentence, and carriers of this virus live for decades. However, apart from the disease, they have no less serious problems.
Indifference kills, not HIV
Dmytro Sherembey went to the infectious diseases hospital and heard, even in the corridor, how a baby was crying somewhere. The baby was screaming all the time, but several nurses were sitting nearby, paying no attention to it. Dmytro came up and saw that a naked baby was lying on a dirty wet mattress and was crying of cold. “Can’t you hear the baby crying?” Dmytro asked the nurses. “Do not worry, it’s “an AIDS baby” they give it up. It’s okay,” they answered and continued to drink their tea.
This case made Dmytro think seriously about attitudes towards people living with HIV in Ukraine, and he became a public activist. Among the other things, he was involved in the repair of the room, where the abandoned children with HIV were kept. According to Dmytro, everyone needs to stop considering sick people as second-rate ones, because such a cold-blooded attitude not only kills but also contributes to the further spread of the virus.
The strategy of fighting for the rights of people with HIV, according to Dmytro Sherembey, is in openness. “It’s necessary to go out and show people what HIV carriers look like,” he says. “It’s necessary to overcome the public stereotype that depicts them as people from the basement, drug addicts, prostitutes. And by the way, 52% of patients in Ukraine are infected through normal heterosexual relationships.”
Here, it is worth finally uncovering the difficult but instructive story of Dmytro himself. He was a drug addict, got infected with HIV, hepatitis C and tuberculosis, and also got in jail several times. Willpower allowed him to get out of this pit and establish a whole organization to save other people. It is called the All-Ukrainian Network of PLHIV (people living with the HIV virus) “100% of life”.
Salvation from the virus costs 140 USD
The PLHIV network has organized the supply of 90,000 free drug kits for people with HIV. “There were days when one such package cost about 8,000 USD a year, and today its price has dropped to 140 USD,” Dmytro says. “At the same time, there are no restrictions on the life of a person, who is taking antiretroviral therapy. I have been taking one pill every morning for fifteen years and I feel good, I lead an active full life.” These medicines are minimally toxic with minimal side effects. If you follow the recommendations of the doctor and do not miss the drug, then the body is set to zero viral load: its quantity is so meagre that it cannot be detected. Thus, the virus does not destroy the body, and a carrier ceases to be infectious. If all people with HIV were on antiretroviral therapy, the epidemic would stop. “We plan to cover 90% of Ukrainian carriers of the virus with this therapy by 2020, and then the UN recognizes that the development of HIV in our country is stopped,” Dmytro Sherembey says.
And this is a very necessary thing because the HIV epidemic in Ukraine continues. The Ministry of Healthcare reported that at the beginning of 2018, 244 thousand people with HIV were living in Ukraine (more than 141,000 are registered). More than 100 thousand HIV-infected Ukrainian do not know about their diagnosis. During only four months of 2018, in Ukraine has been registered 5,764 new cases of HIV (783 of them are children under 14). Since 1987, a total of 321,382 new cases of HIV have been officially registered in Ukraine, and 46,024 people have died of AIDS in Ukraine.
Dmytro Sherembey himself fell ill in 1997. Then he experimented with drugs and became infected through the injection, but did not immediately find out about it. When he was released after his imprisonment, he decided to put an end to his addiction. At the same time, he began to help other people get rid of addiction as well, persuaded them to take HIV test, and when he once did it himself, he learned about his HIV status. “Then I revised my attitude towards time,” he says. “I went to HIV-positive meetings and saw how depressed they were. I wanted to restore people’s thirst for life and said to myself: a year later, these people will joke about their diagnosis and will make plans for further life. And so it was.”
Ukrainians need to get rid of stereotypes about HIV
Negative stereotypes stigmatize people, they get like a black stigma, and together with it all speculation, gossip, legends associated with this disease. One of the negative stereotypes is that, allegedly, people with HIV can intentionally infect healthy people. In Ukrainian legislation, there is such a term as “Criminal transmission of HIV”. Article 130, Part 4 of the Criminal Code of Ukraine has the following lines: “Intentionally infecting another person with a human immunodeficiency virus or some other incurable infectious disease that is dangerous for a person’s life is punished by imprisonment for a term from five to ten years.” Dmytro Sherembey believes that this law belongs to the past and it’s time to change it for a long run. “It is necessary to exclude criminal responsibility for this because in Ukraine a large number of people do not know about their diagnosis,” he said. “Unfortunately, we are aware of about twelve attempts to condemn people for it, but such processes last for quite a long time because it is difficult to prove the fact of intentional infection. “According to the head of the PLHIV Network, the very existence of such a law has a very destructive influence on the legal field for HIV-positive people. For example, some use this law to oppress a partner and make his HIV status known. Thus, one doctor demanded a bribe, even without any evidence of when and where the person was infected.
By the way, the USA has already decriminalized “intentional HIV exposure”: previously it was considered a felony, but from the beginning of 2018 it is considered a “misdemeanour” and is punished at the level of an administrative offence. The term of imprisonment was reduced accordingly from eight years to six months. Also, criminal liability for knowingly donating HIV-infected blood was eliminated, since all donated blood must be tested for HIV. Senators, who voted for this law say that it will help slow the spread of the epidemic, as it will reduce the fear of punishment.
One of the moral markers of an HIV carrier, according to Dmytro Sherembey, is the possibility of adopting children. Now it is prohibited by the Family Code of Ukraine, where there is a section 6 “Arrangement of children, orphans deprived of parental care” and there is Chapter 18 in it ‒ adoption. This chapter contains Article 212 and it deals with people, who cannot be adoptive parents and it says: “People, suffering from diseases, the list of which is approved by the Ministry of Healthcare of Ukraine cannot be adopters.” This list contains 18 diseases, among which HIV is in the third place.
By the way, the Ministry of Healthcare of Ukraine in February of the last year proposed in its draft order to reduce this list from 18 to 8 diseases, and eliminate HIV at all. Indeed, according to the Article 14 of the Law “On Countering the Spread of Diseases Caused by the Human Immunodeficiency Virus (HIV) and Legal and Social Protection of People Living with HIV”, infected people and people from high-risk groups enjoy all the rights and freedoms provided for by the Constitution and laws Ukraine, other regulatory legal acts of the country. So the article of the Family Code is contrary to this law, and the contradictions need to be removed to protect the rights of sick people, who are being treated. “There is no danger for children from an adopter, who is taking antiretroviral therapy,” Dmytro Sherembey says. “Therefore, this article, restricting rights, is a discrimination.”
HIV-positive people should live without fear
The network of PLHIV launched a campaign “I have HIV and I can live on”. Its goal was to attract as many people as possible to disclose their status and lead a full life. This is necessary because the intolerant attitude towards HIV carriers is one of the factors that significantly influence the development of the epidemic. They are afraid of possible discrimination and condemnation, people are afraid to take an HIV test. They are ready not to know the truth about their health, only to hide the possibility of such a disease. Any disease should not be a moral trait of a person.
To improve attitudes towards HIV carriers, they need to be treated in the general health care system, Dmytro Sherembey believes. It is not necessary to introduce any separate special centres for them, because this disease is easily controlled by any family practitioner. In addition, you need to inform all citizens of Ukraine that HIV testing is free for them. Antiretroviral therapy is also free.
One example of the open life story is the story of Natalya Kovnir. She was diagnosed in 1997, and since 2004 she has been on antiretroviral therapy because until then there were problems with drugs. “At the end of the 1990s, there was zero information,” she recalls. “They told me at the sanitary-epidemiological station that I would live two years.” Natalya began to take therapy, and for many years she has been feeling good, works in her beloved job ‒ an HR specialist in the office of the PLHIV Network.
“I told my doctors, the dentist and the gynaecologist, about my diagnosis, they are normal and adequate people, so I didn’t have any problems with them,” she said. “My relatives also know this: my little nephew always called my pills “snacks”. And he always asked: “Natasha, have you already eaten some snacks?” For many years I have been taking daily meds, and my blood has become safe, my viral load is not observed, I am absolutely safe”.
Text by Oleg Shynkarenko