Investigative reporting / Tajikistan

IWPR Tajikistan: The price of irresponsibility: 501 children with HIV, 57 dead

30.03.2015

Every year, because of the carelessness of husbands dozens of healthy young women are infected with HIV, which is then transferred to their children. According to statistics, 70% of carriers of HIV are men, who do not warn their brides about the virus prior to the wedding. Tajik President Emomali Rahmon emphasized the key role of healthy and strong families in developing the country, and urged young couples to undergo a medical examination before marriage. However, HIV testing has a fee, public awareness is low, and sometimes people contract the virus in health facilities.

MarkhaboMarhabo Zununova, Dushanbe

Khairi now strongly believes that before marriage partners should undergo a medical examination, communicate honestly about everything with each other and, on the basis of available data, think about their future together. This is the key to a successful and happy family.

If only someone had told her this six years ago. Despite the fact that she married at a pretty mature age of 32, she did not even know about the need to for a test. As a result, she and her five year old son are now carriers of HIV. Two years after marriage, her husband died of AIDS. The virus was the only inheritance they received from him.

 “He cried, repented and asked for forgiveness from me and his son for infecting us with such a disease,” says Khairi, with tears in her eyes, agreeing to share her story on the condition of anonymity.

The heroine knew she was marrying a man who had lived in Russia for 10 years, of which 7 years were spent in prison for selling drugs. But neither he nor his relatives considered it necessary to tell the whole truth about him, until she confronted her new family.

Khairi shared with us that right before her husband’s death, on the last day of meeting with her, he admitted that “upon release from prison, the doctors told him about the positive HIV test result, but he did not believe it and was dismissed it.”

“We have been registered at the AIDS center for several years now, and my grown-up son keeps asking me “Why are we constantly taking medications?” says the woman. She still has not found the courage to tell him the whole truth.

Doctors are optimistic about the health of her son – he can live a long and happy life as long as he takes medications on a regular basis. But at the same time there is no guarantee: if his body is burdened with other diseases, his immune system could fail altogether. However, Khairi has a more pressing concern.

“My son and I constantly take medications, but we tell our relatives that it is for tuberculosis. I did not disclose my son’s diagnosis to the kindergarten that he attends, as I am afraid that other parents would not want their children to be with him in the same group” admits our heroine.

PAIN AND SHAME

Similar problems have been experienced by another woman, a mother of two, who contracted the virus from her husband after the wedding, but she learned about it only after giving birth. Now she scrambles to hide her HIV status from everyone, otherwise she and her children will become outcasts.

“If people find out, they will despise, tease and stop interacting [with us]”, says 26-year-old Tahmina, whose name was changed at her request.

Experts from World Health Organization (WHO) have stated: HIV is not transmitted through saliva, by shaking hands, breathing and touching objects. It is transmitted only through unprotected sex, manipulation of blood (transfusion, contaminated syringes), and from mother to child (in utero and during breast-feeding).

However, there is still a well-known misconception in Tajikistan about the need for carriers of immunodeficiency virus to isolate themselves from society, in order to prevent any further infection.

This is confirmed by experts, who conducted a study on the subject, and as a result of a survey among women living with HIV, it turned out that after finding out about their HIV status, 72% of them contemplated suicide, and 24% of them have made such an attempt.

“After finding out about their status, all female participants were in shock, pain, shame and depression,” was stated in the report.

Misleading view of HIV is amplified by another mistake that the virus only infects people leading an immoral life. That is what Tahmina thought until she herself contracted HIV.

“I kept wondering how I had angered Allah, what grave sin I had committed, since I was not promiscuous or a drug addict” reflects the 26-year-old mother of two. “Until then, I used to think that this disease is prevalent only among prostitutes and drug addicts. I never thought I would have HIV.”

Tahmina, too, buried her husband four years ago, who died from the virus. He was a drug addict.

In addition to their children’s serious health problems, the two mothers face financial difficulties, since they are the only ones making a living; without education and with the need to frequently visit doctors, no one wants to hire them. Parents and relatives of their husbands, despite having their grandchildren, do not want to deal with them, leaving them without shelter, which is also noted in the Alternative Report on discrimination against women prepared by a number of public organizations in the country, and presented to the United Nations.

“Most women do not have an official registration of marriage, they are not registered in their husband’s house, and after his death they cannot prove their right to the house, they are left on the streets with their children. At the same time, there are many cases when the relatives of the husband kicked the woman out of the house simply because she was HIV-positive,” the document states.

2015 – THE YEAR OF HEALTHY FAMILY

In late 2014, speaker of the lower house of parliament of RT, Shukurzhon Zuhurov drew attention to the statistics, which is growing rapidly from year to year: currently there are more than 6,500 HIV-infected people registered in the country, of which 4,700 are men and the rest are women.

This is only the number of officially registered people. There are those who either do not know about their condition or are afraid to go to AIDS centers. And both groups are responsible for the spread of the virus among healthy population.

In 2014, there were 318 new cases of infection registered.

Experts say that the most common way of HIV infection remains unprotected sex. As a consequence of this reason, another way of spreading infection is growing – from mother to child (intrauterine infection, as well as through breast-feeding).

As Zuhurov has stated, of the total numbers of people with HIV, 501 were children; 188 of them were born infected, 57 have died, and the rest were born healthy, but they contracted the virus from their mothers through their milk.

The vast majority of HIV-infected people are part of the young and economically active population between ages 20 to 50.

The spread of HIV among couples has become such an urgent matter in Tajikistan that even President Emomali Rahmon has expressed his concern.

In his message to the members of the lower house of parliament of RT, President Rahmon noted that under the Family Code, young couples should undergo a medical examination prior to the wedding, but this requirement is almost never put into practice.

However, this procedure could have a significant impact on reducing the number of HIV-infected and their subsequent divorce; it would be the basis for strong and happy families, without which, as the president noted, the development of the country is impossible.

In this regard, in his annual address to the parliament, Rahmon focused on the education campaign: “Cultural issues of family life, increasing parental responsibility for training and preparing children for independent life, as well as the strength of the family bond are among the problems that require constant attention of all government agencies, educational institutions and every member of society. Given the importance of the issue, it is crucial to introduce special courses on ethics of family life to the upper grades of secondary schools.” He proposed to declare 2015 as the “Year of the family”.

PROBLEMS IN HEALTHCARE SYSTEM

Following the message of the President, the lower house of parliament of RT approved the initiative of the Ministry of Health on the introduction of mandatory classes on sex education among school children, to prevent teen and unplanned pregnancy.

Experts say that there used to be programs on the prevention of the spread of HIV in the country, implemented mainly through the efforts of international organizations and non-governmental sector, but at the moment, there is no large-scale and systematic information campaign for the general public, in particular among youth. This is crucial, firstly, in order to clarify the ways of contracting human immunodeficiency virus, and secondly, to explain that it is safe for HIV carriers to live among [healthy] people (except for unprotected sex, using a common syringe, and transfusion of unscreened blood).

Lack of sufficient knowledge about the disease leads to the rapid spread of the virus, due to the misconstruction of HIV-infected people on the dangers and consequences of infecting other healthy persons.

In the aforementioned Alternative Report on implementing the Convention on the Elimination of All Forms of Discrimination against Women (CEDAW) developed in 2013, the public organizations “Center for Mental Health and HIV/AIDS”, “Tajik Network of Women Living with HIV” and “Guli Surkh” with the active participation of representatives from the community of women living with HIV, it is noted that the problem is aggravated by active and uncontrolled immigration:

 “More than 1 million of the economically active population is working in Russia or Kazakhstan, leaving their family and loved ones for a long term. Being away from home, many of them engage in risky behavior. It is worth noting that back home, HIV-infected migrants can infect their wives, as well as sex workers, with whom they have a relationship in the course of labor migration.”

At the moment, only those who are obligated get tested for HIV at the AIDS centers, e.g. those who travel to Russia, foreigners who need to obtain visas, pregnant women directed by the reproductive centers (antenatal).

In an informal conversation, Amina Saidalieva, a doctor of one of the AIDS centers in Dushanbe, admitted that when the services were free of charge, many people came to get tested for HIV, especially young people returning from outside of Tajikistan. Once testing fees were introduced, the corridors of the Center became empty. The HIV test fee is 22 TJS, which is quite expensive for a wide range of the population.

A. Saidalieva also noted that in recent years, there have been a lot of complaints by HIV-negative parents whose children are infected with HIV. After discussions, it turned out that most of these children were treated in hospitals, received injections or blood transfusions.

The doctor also shared her doubts about the “purity” of sold blood and its derivatives, and she believes that it is necessary to create a “Blood Bank”, where the blood could be stored for up to 6 months, i.e. for the period in which HIV can be detected in it.

“We know that blood donors are tested for HIV, but we also know that there are ‘window periods’, when it is impossible for a period of 3 to 6 months to detect human immunodeficiency virus in the blood. It will manifest itself after 6 months; nevertheless, this blood is sold and transfused into patients who need it. There is no guarantee on the purity of all the blood sold, there are also doubts regarding the sterility of the syringes that are injected in hospitals” stated the doctor.

Another point that the doctor made is the passing of medical examinations by the medical staff themselves: “Health workers such as doctors, nurses, technicians, as well as the support staff, according to the regulations, must have sanitary books, and they must pass medical examinations every 6 months, but in most cases this done formally, often for a fee in the Sanitary-Epidemiological Station (SES).”

The Ministry of Health of the Republic of Tajikistan in its numerous statements published in the media, has denied all the criticism regarding the sterility of medical institutions, workers, and tools, and has argued that everything meets the required standards.

But our heroine Khairi said that nobody tested her for HIV prior to giving birth, and the child was born weak. Later, at the age of 1.5, his diagnosis of HIV was confirmed, and she kept wondering: how could this happen, whose fault was it?

Neither during the antenatal consultation to the pregnant woman, nor at the hospital, when the pregnant woman was admitted, she was tested for HIV and other infectious diseases, so to the question of “how could this happen?” Tatiana Majidova, a pediatrician of State Institution “National Center for the Prevention and Control of HIV/AIDS” commented that Tajikistan started paying serious attention to the threat of HIV infection only since 2008.

 “Only in 2008 did we start training our midwives-gynecologists on the issues of testing pregnant women for HIV. Most likely, at the time HIV testing was carried out in certain reproductive centers and maternity hospitals. Social welfare has always existed for pregnant women, since Soviet times, but in this case, as Khairi herself admitted, at that time she did not live in one place, did not have a phone number, so the antenatal nurses and doctors most likely could not determine her actual place of residence.”

Further, the expert noted that there are three ways of infection from mother to child: intrauterine fetal infection, infection during childbirth, due to damage of the skin and mucous membranes of the child and/or the mother, as well as during breastfeeding of the child by the infected mother.

Given Khairi’s condition during her pregnancy – stress related to housing quarrels with her husband’s relatives, her husband’s illness, as well as her unhealthy and unbalanced diet, it is very likely that there was an intrauterine infection of the fetus. Breastfeeding her child after birth aggravated the situation.

As the doctor noted, if there are no complications during pregnancy and childbirth, and after birth the child is fed infant formula, the risk of infection is almost minimal, since ideally during conception, the man’s sperm and woman’s egg are sterile, even in HIV-infected parents. In 100% of the cases the conceived child is absolutely healthy.

 “After the birth of the child by infected parents, s/he is immediately put on record, but the exact diagnosis can be confirmed only after 18 months, that is, when the child is 1.5 years old, because only at this age the child begins to produce his/her own antibodies in the blood. Testing a child younger than 1.5 years for HIV may give false-positive results, this should be taken into account. Until the age of 1.5, the child’s state is observed and evaluated by experts of AIDS center: they note whether or not the child is experiencing any physical lag – weight and height, psychological development, whether s/he has frequent colds, pneumonia, etc.” said pediatrician T. Majidova.

According to the expert, currently 97% of all pregnant women have been tested for HIV in Tajikistan. Even if a woman is not screened for HIV in the reproductive center, she will definitely be tested free of charge upon the admission to the hospital. If HIV is detected in the pregnant woman, then she will be prescribed Antiretroviral Therapy (ART) so as to minimize the risk of HIV transmission to her child.

“In some cases, the mother is recommended to have a C-section (“caesarian section”), but certainly prior to the gestational age of 37 weeks and before the onset of labor. This measure is useless after the onset of labor. The earlier they detect the infection in pregnant women and appoint ART (it can be appointed as early as at 14th week of pregnancy), the lower the risk of infection of the fetus. After the birth of the child, these drugs in the form of suspensions are prescribed to the child, and the mother is advised to give her child infant formula.” said T. Majidova.

MANDATORY TESTING BEFORE THE WEDDING

A poll among professionals and citizens shows that the society supports the introduction of mandatory HIV test before marriage.

Chief information officer of the Committee on Women and Family Affairs under the Government of RT, Mahbuba Asimova noted that mandatory testing would help people learn not only the HIV status but other infectious and genetic diseases, in order to prevent infection of a healthy partner and birth of a sick child in the future.

 “Every young man before registering must understand that he is responsible not only for the life of his significant other, but also for the lives of his unborn children,” she noted.

The same opinion is held by the Director of the Municipal Health Center, Homidjon Nuraliev, who tries to convince all engaged couples to undergo this procedure, as there is a benefit and no harm in doing so.

“Because of the state of health of a spouse, misunderstandings may arise in the family, the consequences of which lead to divorce. Therefore, a medical examination is an important step to building a happy family,” he said.

Leading specialist of Marriage registry House in Dushanbe, Gulnora Isamova reported that in 2014 her agency registered 5,808 marriages. We do not know how many more young people will join the ranks of HIV-infected as a result of these marriages.

“Many newlyweds would be outraged by the introduction of mandatory HIV testing. However, I believe a medical examination is necessary, as the future husband and wife need to know about the each other’s health,” said Gulnora Isamova.

The ordinary citizens have the same opinion, none of whom have spoken against [mandatory testing].

 “If a person sets to build a family, he should not knowingly harm himself and must undergo a medical examination, particularly if there are substantial grounds for it. And then there is a question of his conscience,” said a student of TSMU, Aziza Khamidova.

Bakhtiyor Umarov, a resident of Dushanbe, commented on the subject, saying that one can easily buy a fake certificate in the country, but the emphasis should be placed precisely on the consciousness of the couples themselves: “Those people who have something to hide can purchase fake certificates. But one cannot hide HIV, hepatitis, or drug addiction for a long time, and when it is discovered, it will be too late.”

Bitterly recalling her marriage, the 27-year-old Salomat said: “Prior to getting married, man and woman must undergo a medical, including psychiatric examination, and they must provide certificates to each other. Otherwise, there will be serious consequences, I can say that with certainty. It will be fair in relation to one other, and afterwards the couple can make a joint decision.”

This is not the first time that the question of mandatory medical examination among spouses has been raised in Tajikistan, and it has both supporters and opponents. However, it is still unclear whether this discussion will lead to a specific solution, and in the meantime, HIV continues to spread rapidly.

Although it was previously assumed that the main groups who are at the risk of being infected with viruses involve people, who are not the best representatives of society – drug users and sex workers – nowadays however, the dynamics of the spread of virus is gradually changing to healthy and young girls from decent families, and innocent children.

Under other circumstances they would have never contracted the virus and suffered so much pain and torment if their husbands had told about it before marriage, or at least practiced safe sex, so as not to infect healthy and beautiful women, whose lives have now turned into hell.

But since men do not consider it necessary to inform their partners and continue to deliberately infect them, the issue of mandatory HIV testing before marriage is as relevant as ever.

Recalling the events in her life, 26-year-old Tahmina wishes she had inquired about the health of her now deceased husband. And if she were to get married now, she would surely ask about mutual medical examination. And she would not have to suffer this much. Most importantly her children would be healthy. There are so many “ifs” and regrets.

But as long as the country does not impose a mandatory test before marriage, how can a young and shy girl that Tahmina was before her wedding, would think of and require her future groom to test for HIV?

“If I had known about his disease and drug addiction prior to the wedding, I would have thought twice before starting a family with him,” concluded Tahmina.

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