Non-fatal Diagnosis:
How People with HIV Live in Kyrgyzstan
The human immunodeficiency virus (HIV) and the acquired immunodeficiency syndrome (AIDS) caused by it is called the plague of the 21st century. Although it is another century, the problem of disease mongering is still pressing. However, today HIV is no more a fatal verdict.
"When I heard I had HIV, I became numb"
Until a certain moment, the life of Gulzat (the name was changed for ethical reasons) was as usual. Or maybe even better than the life of many others.
The girl completed school, enrolled to the university – to the department of economy, just as she was planning. She received a degree and got married. Deliberately and for love. She had dated her fiancé Sagyn for several years before he proposed to her.
After the wedding, the newlyweds lived separately in their house, in concert, amicably.
The only thing that somewhat sullied the life of the family is childlessness. The spouses went to doctors to find out why Gulzat cannot get pregnant. They underwent a whole set of medical tests, including HIV/AIDS test.
The girl completed school, enrolled to the university – to the department of economy, just as she was planning. She received a degree and got married. Deliberately and for love. She had dated her fiancé Sagyn for several years before he proposed to her.
After the wedding, the newlyweds lived separately in their house, in concert, amicably.
The only thing that somewhat sullied the life of the family is childlessness. The spouses went to doctors to find out why Gulzat cannot get pregnant. They underwent a whole set of medical tests, including HIV/AIDS test.
"They called us from the lab and asked us to come take the tests in person. I did not know what to expect from the visit and was not ready for what I heard then."
- the girl said.
- the girl said.
The doctors told the couple, very delicately and nicely, that, according to the tests, the young woman is HIV positive, and her husband is HIV negative.
"This piece of news shocked me. First, I became numb: I did not understand anything, did not say anything, and did not want to do anything. I just could not accept the fact that I had HIV."
- the girl said.
- the girl said.
The situation was even worse because Gulzat did not know anything about the disease because no one of her relatives or friends did not have anything like this.
"I had a set of stereotypes in my head, panic and I thought that my life was over. Gradually I started to figure it out and learned that HIV is not necessarily the fatal diagnosis. Today one can live life with it to the full and for a very long time," Gulzat said.
If the young woman was trying to accept the situation, her husband failed to do it. First, Sagyn was sure that the tests were false, but the second test dispelled his hopes.
"After he knew for sure that there was no mistake in the tests, my husband started to change gradually. He started to suspect me of adultery, and iced me out. It even came to a point when he was afraid of sitting with me at the same table not to catch HIV," the young woman recalled bitterly.
The relations between the spouses broke completely in six months after the couple learned about the HIV-positive status of Gulzat. Sagyn said he wanted divorce and told his relatives about his wife's disease.
"And then all hell broke loose. My husband's relatives started to call and insult me. They blamed for all the sins. They said I was sluttish. Otherwise, how it happened that Sagyn was healthy and I was not. They shouted that I allegedly communicated the disease to them when I was serving tea to them, and to their children when I was kissing them when we met," the young woman said.
"I had a set of stereotypes in my head, panic and I thought that my life was over. Gradually I started to figure it out and learned that HIV is not necessarily the fatal diagnosis. Today one can live life with it to the full and for a very long time," Gulzat said.
If the young woman was trying to accept the situation, her husband failed to do it. First, Sagyn was sure that the tests were false, but the second test dispelled his hopes.
"After he knew for sure that there was no mistake in the tests, my husband started to change gradually. He started to suspect me of adultery, and iced me out. It even came to a point when he was afraid of sitting with me at the same table not to catch HIV," the young woman recalled bitterly.
The relations between the spouses broke completely in six months after the couple learned about the HIV-positive status of Gulzat. Sagyn said he wanted divorce and told his relatives about his wife's disease.
"And then all hell broke loose. My husband's relatives started to call and insult me. They blamed for all the sins. They said I was sluttish. Otherwise, how it happened that Sagyn was healthy and I was not. They shouted that I allegedly communicated the disease to them when I was serving tea to them, and to their children when I was kissing them when we met," the young woman said.
Official divorce followed the scandals and humiliating quarrels. The young woman got depressed for one year, but managed to get out of it. A WhatsApp group of people living with HIV (PLH) helped her a lot.
"Participants of the group, like any other group on WhatsApp, discuss quite common things. They do not discuss the disease because once you take antiretroviral drugs regularly, you can just live your life. It helped me to realise that I can still straighten out my life," Gulzat said smiling.
Now the young woman is settled in well: she has a good job and plans for the future. She wants to leave Kyrgyzstan for a country where people do not avoid people living with HIV.
"Only my loved ones and two of my friends know about my status. In our country, this is not a kind of information that can be shared with everyone, without fear of being criticised and disgusted. I had to suffer the stigma because of the disease," the young woman said.
Now the young woman is settled in well: she has a good job and plans for the future. She wants to leave Kyrgyzstan for a country where people do not avoid people living with HIV.
"Only my loved ones and two of my friends know about my status. In our country, this is not a kind of information that can be shared with everyone, without fear of being criticised and disgusted. I had to suffer the stigma because of the disease," the young woman said.
How routes of transmission changed
According to the Republican Centre 'AIDS', the country had 10,807 HIV infections as of August 1, 2021. Including 10,205 citizens of Kyrgyzstan and the rest are foreigners.
The National Statistical Committee provided the figures below as it is preparing the full-year review. However, the National Statistical Committee's data clearly shows the HIV growth rate among men and women for the 16-year period.
The National Statistical Committee provided the figures below as it is preparing the full-year review. However, the National Statistical Committee's data clearly shows the HIV growth rate among men and women for the 16-year period.
Deputy director of the Republican Centre 'AIDS' Aibek Bekbolotov noted that nearly 85 per cent of HIV cases are people aged 18 to 49.
"If we look at the social portrait, now 75 per cent of HIV infections are people with secondary or higher education, with no risk behaviour in terms of drug usage," Bekbolotov said.
However, according to him, today the main route of HIV transmission in the Kyrgyz Republic is sexual contact. "In our country, HIV has been for 30 years and in the first 5 years it was mainly transmitted among drug users. 10 years ago, 98 of 100 got HIV from injection, 2 persons got it by having sex. Now the picture is quite different. 80 persons get it by having sex, and the rest get it via blood," the deputy director of Centre 'AIDS' said.
According to the Centre, in 1996-2000 the main route of HIV transmission was parenteral (by injection). In that period, there were 1,828 cases infected that way. Sexual transmission was less frequent – 608 persons got infected this way during the period. Also, 55 cases of vertical transmission (from mother to child) were reported, and in 26 cases the source of HIV was not identified.
"If we look at the social portrait, now 75 per cent of HIV infections are people with secondary or higher education, with no risk behaviour in terms of drug usage," Bekbolotov said.
However, according to him, today the main route of HIV transmission in the Kyrgyz Republic is sexual contact. "In our country, HIV has been for 30 years and in the first 5 years it was mainly transmitted among drug users. 10 years ago, 98 of 100 got HIV from injection, 2 persons got it by having sex. Now the picture is quite different. 80 persons get it by having sex, and the rest get it via blood," the deputy director of Centre 'AIDS' said.
According to the Centre, in 1996-2000 the main route of HIV transmission was parenteral (by injection). In that period, there were 1,828 cases infected that way. Sexual transmission was less frequent – 608 persons got infected this way during the period. Also, 55 cases of vertical transmission (from mother to child) were reported, and in 26 cases the source of HIV was not identified.
According to Bekbolotov, today people who live ordinary life, but practice unsafe sex get HIV often.
"It happens because at first the infection was in the key population groups, and then spread to general groups. In other words, these are intimate partners, wives of HIV-infected persons, drug users," Bekbolotov said.
Keep in mind that key groups are:
• Injecting drug users;
• Sex workers;
• Men who have sex with men and bisexuals;
• Prisoners.
The decrease in the number of cases in the groups of injecting drug users can be explained by the fact that in Kyrgyzstan core facilities, jointly with donors, took significant measures to prevent the infection in key groups.
"It happens because at first the infection was in the key population groups, and then spread to general groups. In other words, these are intimate partners, wives of HIV-infected persons, drug users," Bekbolotov said.
Keep in mind that key groups are:
• Injecting drug users;
• Sex workers;
• Men who have sex with men and bisexuals;
• Prisoners.
The decrease in the number of cases in the groups of injecting drug users can be explained by the fact that in Kyrgyzstan core facilities, jointly with donors, took significant measures to prevent the infection in key groups.
"We distributed syringes, condoms. The programmes are working now and we see they have improvements in key groups. In 2010, a syringe cost more than bread, and now syringes are available to anyone," deputy director of Republican Centre 'AIDS' said.
According to Aibek Bekbolotov, today donors also help to implement various events to prevent the spread of HIV/AIDS. Moreover, the state is also financing such events. Currently, the Kyrgyz Republic has a state programme of the government to eliminate HIV infection in the Kyrgyz Republic for 2017-2021.
According to Aibek Bekbolotov, today donors also help to implement various events to prevent the spread of HIV/AIDS. Moreover, the state is also financing such events. Currently, the Kyrgyz Republic has a state programme of the government to eliminate HIV infection in the Kyrgyz Republic for 2017-2021.
How much does it cost to the state to treat HIV positive people?
Today, HIV is no longer a fatal disease, but a chronic disease that does not prevent an infected person from living a normal life, provided that they take special medications. In Kyrgyzstan, the state helps to meet the need to people living with HIV. In average, 250 dollars per year is spent on one patient. This amount includes a year-long treatment, which now costs 120 dollars per person, as well as the payment for all tests because the patient needs to control some of their indicators.
"This money is meant to purchase special medicines that are used with HIV infection. These medicines suppress the disease activity and do not let the consequences come out," Aibek Bekbolotov said.
According to him, if one needs to take a lot of pills with other chronic diseases, in case of HIV, only one tablet needs to be administered. Moreover, if the rules of treatment are followed regularly, the infection gets suppressed so that people living with HIV can have unprotected sex with their partners, and give birth to healthy children.
"This money is meant to purchase special medicines that are used with HIV infection. These medicines suppress the disease activity and do not let the consequences come out," Aibek Bekbolotov said.
According to him, if one needs to take a lot of pills with other chronic diseases, in case of HIV, only one tablet needs to be administered. Moreover, if the rules of treatment are followed regularly, the infection gets suppressed so that people living with HIV can have unprotected sex with their partners, and give birth to healthy children.
Imperfect laws
Specialist in advocacy of the public foundation 'Positive Dialogue' Arsen Ambaryan said that current scale of HIV/AIDS rate can be explained by the lack of preventive measures in early 90s.
"Since the first case of the infection was detected in the Kyrgyz Republic, an entire generation has grown up. If beforehand people having no reliable and available information thought that HIV was the fate of outcasts, now 20-30-year old people who grew up on myths and stereotypes generally have some idea of the disease, yet their knowledge is incomplete. However, regular, systematic education and awareness are the most effective and economically reasonable ways to fight the HIV epidemic," Ambaryan said.
He emphasised the gaps in the Kyrgyz legislation related to HIV.
"Recently, I analysed both the framework law "On HIV/AIDS in the Kyrgyz Republic" and its practice. Unfortunately, I have to acknowledge that the law has turned old, it is based on the classic paternalistic model, without reference to the rights and interests of a patient, and its practice is discriminatory against patients," the lawyer said.
In particular, the government's programme to eliminate HIV infection in the Kyrgyz Republic for 2017-2021 recognised the problem of stigmatisation and discrimination against HIV-infected, yet fails to introduce any anti-discriminatory measures to reduce stigmatisation and discrimination.
He emphasised the gaps in the Kyrgyz legislation related to HIV.
"Recently, I analysed both the framework law "On HIV/AIDS in the Kyrgyz Republic" and its practice. Unfortunately, I have to acknowledge that the law has turned old, it is based on the classic paternalistic model, without reference to the rights and interests of a patient, and its practice is discriminatory against patients," the lawyer said.
In particular, the government's programme to eliminate HIV infection in the Kyrgyz Republic for 2017-2021 recognised the problem of stigmatisation and discrimination against HIV-infected, yet fails to introduce any anti-discriminatory measures to reduce stigmatisation and discrimination.
"It's only this year when the Constitutional Chamber found that the restriction imposed by order of the government on October 7, 2015 No. 733 "The list of diseases, which disqualify a person from serving as an adoptive person, guardian (caregiver), and foster parent" was unconstitutional. In other words, this discriminatory restriction was valid for six years, the entire term of the programme, and the authorities could exclude this norm from the order by themselves, but it took lawyers and the Constitutional Chamber to get involved in this matter," said Arsen Ambaryan.
A recent example of discrimination against people living with HIV is the last year's general pardon, he said.
"The act of general pardon dated May 8, 2020 applied to persons having all infectious diseases, including HIV/AIDS, only after their full recovery. This approach is obviously discriminatory as HIV is a chronic disease, which, unlike other infectious diseases, has no terms of recovery. The AIDS is the final, terminal stage of HIV, resulting in certain death," the lawyer said.
According to him, as of January 2021, there were 183 persons with HIV in prisons who were not pardoned in 2020. And by all appearances, these prisoners hardly have any access to therapy, unlike patients at large.
"The law sets forth the age of sexual consent – 16 years old. According to the law "On reproductive rights of citizens and guarantees of their exercise", all persons aged 16 and more may access information and services in the field of sexual and reproductive health, whereas a young person may visit the AIDS Centre unaccompanied only from the age of 18," Ambaryan said.
A recent example of discrimination against people living with HIV is the last year's general pardon, he said.
"The act of general pardon dated May 8, 2020 applied to persons having all infectious diseases, including HIV/AIDS, only after their full recovery. This approach is obviously discriminatory as HIV is a chronic disease, which, unlike other infectious diseases, has no terms of recovery. The AIDS is the final, terminal stage of HIV, resulting in certain death," the lawyer said.
According to him, as of January 2021, there were 183 persons with HIV in prisons who were not pardoned in 2020. And by all appearances, these prisoners hardly have any access to therapy, unlike patients at large.
"The law sets forth the age of sexual consent – 16 years old. According to the law "On reproductive rights of citizens and guarantees of their exercise", all persons aged 16 and more may access information and services in the field of sexual and reproductive health, whereas a young person may visit the AIDS Centre unaccompanied only from the age of 18," Ambaryan said.
According to him, the absence of freely available HIV self-test kits in combination with age restrictions specified by the law become a serious obstacle to testing adolescents younger than 18 years.
The territory of myths
Despite the fact that the humankind has known about HIV/AIDS for a few decades, many people know almost nothing about the disease, ways of its transmission and its symptoms. Therefore, they trust various fables and myths about HIV.
We have collected the most widespread myths here and explained what is wrong about them.
We have collected the most widespread myths here and explained what is wrong about them.
Myth 1: One can get HIV when standing near a HIV-infected person
This false belief has been leading to the discrimination against HIV-infected people for many years. Despite all awareness raising campaigns, many people still believe that HIV is transmitted via saliva or a body contact.
However, HIV cannot be transmitted via a touch, tears, saliva, sweat, or urine.
In other words, one can easily breathe the same air as a HIV-positive person, kiss them, hug and shake hands, use common tableware, equipment in a fitness club, and touch the items that the infected person touched.
HIV is transmitted only via body fluids such as blood, semen, vaginal discharge, and breast milk.
However, HIV cannot be transmitted via a touch, tears, saliva, sweat, or urine.
In other words, one can easily breathe the same air as a HIV-positive person, kiss them, hug and shake hands, use common tableware, equipment in a fitness club, and touch the items that the infected person touched.
HIV is transmitted only via body fluids such as blood, semen, vaginal discharge, and breast milk.
Myth 2: HIV can be treated with alternative medicine
No, it cannot. Folk medicine, just like shower after sex or other doubtful actions, is useless against HIV and will not avert it.
Myth 3: HIV is spread by mosquitoes and gnat
This virus is transmitted via blood. Scientists carried out some researches and found out that a human cannot get it after a mosquito bite for two reasons:
• The insect does not inject blood of the previously bitten human;
• HIV virus dies quickly in the body of mosquitoes and gnat.
• The insect does not inject blood of the previously bitten human;
• HIV virus dies quickly in the body of mosquitoes and gnat.
Myth 4: A condom protects 100 per cent from the HIV
This is not really so. A condom can break or slip off during sex.
Therefore, successful HIV/AIDS control campaigns urge to not just use condoms, but ask people to test for HIV, and if tested positive, get treatment immediately.
Therefore, successful HIV/AIDS control campaigns urge to not just use condoms, but ask people to test for HIV, and if tested positive, get treatment immediately.
Myth 5: HIV-positive mothers always transmit the virus to their children
Not necessarily. A woman wish suppressed HIV can give birth to healthy babies.
Myth 6: A HIV-positive person looks differently
Some people may not have HIV symptoms for many years after the infection. Therefore, one cannot tell if a person is infected or not by their appearance.
Myth 7: HIV is spread by leaving syringes with infected blood at bars, nightclubs, cinema theatres
HIV is very unstable in the ambient environment, so one cannot get infected this way. Anyway, no cases of HIV transmission this way have ever been reported.
Myth 8: HIV-infected children may transmit the disease to a healthy child when playing together, for example, after a bite. Therefore, such children must attend special kindergartens or schools separately from healthy children.
Children do not bite each other often. Moreover, it takes a lot of saliva to get infected with HIV, and in the history of the epidemic, no such cases have been reported. All over the world, HIV-infected children attend regular schools and kindergartens and must not be isolated from healthy children.
Myth 9: AIDS and HIV are synonyms
In fact, they are not the same. The human immunodeficiency virus is a pathogen that infects the organism, while the acquired immunodeficiency syndrome is a clinical manifestation of the infection at the late stages. One can be a HIV carrier, yet not have AIDS.
Where in the Kyrgyz Republic can I learn about my status?
Several state centres for HIV testing are working in Kyrgyzstan. The testing is voluntarily, and anonymous at will.
Bishkek
The republican centre "AIDS". 8 Logvinenko Street, Bishkek. Phones: 0312301082, 0312300753.
City Centre for AIDS prevention and control. 62 Toktogul Street, Bishkek. Phones: 0312680830, 0312486617.
City Centre for AIDS prevention and control. 62 Toktogul Street, Bishkek. Phones: 0312680830, 0312486617.
Chui region
Chui regional centre for AIDS prevention and control. 129a Komsomolskaya Street, Tokmak. Phones: 0313830612, 0313830617.
67 Kozhomberdiev Street, Kara Balta, Chui region.
6 Imankulov Street, Kant, Chui region.
67 Kozhomberdiev Street, Kara Balta, Chui region.
6 Imankulov Street, Kant, Chui region.
Osh
Osh regional centre for AIDS prevention and control. 10 Mominov per., Osh. Phone: 0322276630.
Osh region
54, Chegi Pazylov Street, Kara Kuldzha village, Osh region.
75 Bokonbaev Street, Gulcha village, Osh region.
31 Lenin Street, Nookat town, Osh region.
1 Kirov Street, Kara Suu village, Osh region.
75 Bokonbaev Street, Gulcha village, Osh region.
31 Lenin Street, Nookat town, Osh region.
1 Kirov Street, Kara Suu village, Osh region.
Dzhalal-Abad region
Dzhalal-Abad regional centre for AIDS prevention and control. 37 Kurortnaya Street, Dzhalal-Abad. Phone: 0372223159.
44 Zheenaliev Street, Kazarman village, Dzhalal-Abad region.
27 Kudash Momunkulov Street, Toktogul village, Dzhalal-Abad region.
1 Sorokin Street, Massy village, Nooken district, Dzhalal-Abad region.
Dostuk Street, Tash-Kumyr, Dzhalal-Abad region.
120 Umetaliev Street, Kerben village, Dzhalal-Abad region.
44 Zheenaliev Street, Kazarman village, Dzhalal-Abad region.
27 Kudash Momunkulov Street, Toktogul village, Dzhalal-Abad region.
1 Sorokin Street, Massy village, Nooken district, Dzhalal-Abad region.
Dostuk Street, Tash-Kumyr, Dzhalal-Abad region.
120 Umetaliev Street, Kerben village, Dzhalal-Abad region.
Naryn region
Naryn regional centre for AIDS control and prevention. 1 Razzakov Street, Naryn. Phones: 0352251942, 0352253054.
1 B. Shameyev Street, At-Bashy village, Naryn region.
157, 165, S.Orozbak St., Kochkorka village, Naryn region.
148 Erkinbek Matyev Street, Chayek village, Naryn region.
1 B. Shameyev Street, At-Bashy village, Naryn region.
157, 165, S.Orozbak St., Kochkorka village, Naryn region.
148 Erkinbek Matyev Street, Chayek village, Naryn region.
Issyk-Kul region
Issyk-Kul regional centre for AIDS prevention and control. 118a, Amanbaev Street, Karakol. Phones: 0392251718, 0392251664.
94 T.Okeyev Street, Balykchi, Issyk-Kul region.
1B Sovetskaya Street, Cholpon-Ata, Issyk-Kul region.
97 Shapak Baatyr Street, Teploklyuchenka village, Ak-Suu district, Issyk-Kul region.
94 T.Okeyev Street, Balykchi, Issyk-Kul region.
1B Sovetskaya Street, Cholpon-Ata, Issyk-Kul region.
97 Shapak Baatyr Street, Teploklyuchenka village, Ak-Suu district, Issyk-Kul region.
Batken region
Batken regional centre for AIDS prevention and control. 13 Razzakov Street, Batken. Phones: 0362251407.
3 Stroitelnaya Street, Isfana, Leilek district, Batken region.
7 Bolnichnaya Street, Kadamzhai, Batken region.
3 Stroitelnaya Street, Isfana, Leilek district, Batken region.
7 Bolnichnaya Street, Kadamzhai, Batken region.
Talas region
Talas regional centre for AIDS prevention and control. 257 Lenin Street, Talas. Phone: 0342255236.
1 Raiymkul Satybaldiev Street, Kyzyl-Adyr village, Talas region.
1 Raiymkul Satybaldiev Street, Kyzyl-Adyr village, Talas region.
Moreover, rapid testing is carried out by a range of non-governmental organisations. You can find their addresses here.
Public testing centres provide free HIV testing services to the pregnant, pensioners, children under 16, and participants of emergencies (Afghanistan, Chernobyl, Batken).
Moreover, free testing can be provided at the epidemiological or dispensary unit on doctor's order:
• For clinical reasons (HIV-associated diseases);
• For epidemiological reasons (high risk of HIV infection);
• Migrants staying abroad for more than 3 months;
• Intimate partners of pregnant women;
• Contacts of persons living with HIV (PLH).
According to the website of the Republican Centre "AIDS", HIV testing (without a certificate) is done free of charge.
The price of the voluntary HIV testing is 173 som (just above 2 dollars), rapid blood test is 381 som (nearly 4.5 dollars). An identity document is required for the testing.
Moreover, free testing can be provided at the epidemiological or dispensary unit on doctor's order:
• For clinical reasons (HIV-associated diseases);
• For epidemiological reasons (high risk of HIV infection);
• Migrants staying abroad for more than 3 months;
• Intimate partners of pregnant women;
• Contacts of persons living with HIV (PLH).
According to the website of the Republican Centre "AIDS", HIV testing (without a certificate) is done free of charge.
The price of the voluntary HIV testing is 173 som (just above 2 dollars), rapid blood test is 381 som (nearly 4.5 dollars). An identity document is required for the testing.
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