Standing Up for the Rights of Women Living with HIV: Common Challenges

Published by Anna Ivanova at 30/04/2020

According to official data, more than one million people currently live with HIV in Russia. Having long moved beyond the so-called risk groups, the virus is rapidly spreading in the general population. However, with the right treatment, HIV is a chronic manageable disease which cannot be transmitted via casual contact. Yet despite the increasing availability of current and accurate information about HIV, with large-scale awareness campaigns running from time to time across the country, HIV stigma and discrimination persist. We still live in a society where everyone is equal, but some are “more equal than others,” and HIV-positive people face continued violations of their civil rights due entirely to their diagnosis.

Based on findings shared by EVA, a Russian non-profit helping women affected by HIV and other socially significant diseases, below we outline some of the most common types of violations faced by people living with HIV.

Denial of Healthcare

Article 17 of the Federal Law “on the prevention of the spread in the Russian Federation of the disease caused by the human immunodeficiency virus (HIV Infection)” explicitly prohibits any restriction of individual rights based on the HIV status. However, according to EVA’s Peer to Peer HIV rights project, denial of healthcare is one of the most common complaints brought by people living with HIV to legal counsellors. Instead of serving patients with HIV, some practitioners avoid dealing with them and refer them to the AIDS centre for all types of interventions and routinely deny them access to dental care and various surgeries.

According to Anna who is living with HIV, “In 2010, I had a gynecological operation which required a follow-up so that doctors could monitor my healing and recovery. I developed complications, and the prescribed hormonal medicines only made matters worse. I started looking for other doctors, but gynecologists at all medical centres that I visited only shrugged – no one was able to diagnose my problem for three years. I disclosed my HIV status at each appointment, and specialists refused to physically examine me: either they were afraid to get infected by touching me or they simply could not be bothered. Someone advised me to make an appointment with a gynecologist at an ordinary antenatal clinic on the other end of the city, and I did. Just by giving me a physical examination, she only needed five minutes to come up with a diagnosis. I required another surgery. I went to the hospital. When the surgeon learned about my HIV status, she said to me right before the operation that I was putting her life in danger and she had two children. I asked, ‘Would it have been better for me to just die at home?’ She said, ‘Yes’. With these words, I went into surgery.”

Today, Anna is a peer counsellor at EVA, helping other women with HIV to cope with emotional and other day-to-day problems associated with their diagnosis and also to defend their rights.

In denial of care situations, human rights defenders advise patients to request a written refusal from the doctor. Many practitioners will then agree to provide care to avoid being held liable for violating the patient’s rights. But if they issue a written refusal, the patient can contact a different provider and perhaps file a complaint with the chief physician of the clinic about the doctor who denied them care.

Disclosure of Diagnosis

Article 137 of the Russian Penal Code (“violation of privacy”) imposes liability for various types of privacy breaches, including unwarranted disclosure of personal information. Nevertheless, disclosure of diagnosis is one of the most common violations faced by people with HIV.

In most cases, the healthcare facility discloses a patient’s HIV status by marking their medical records with this information or by giving the patient their diagnosis in a crowded lobby or in a hospital ward with other people around. According to Elena Ivanova, Peer to Peer project coordinator, women tend to experience such privacy breaches more often than men: “When a woman with HIV is going through pregnancy and childbirth, she is followed by a range of healthcare providers, including the AIDS centre, her local antenatal clinic and the maternity hospital. With the increased number of providers, the risk of unwarranted disclosure of diagnosis is higher: the antenatal clinic usually makes a mark on the front page of the woman’s medical records, which can be seen by anyone, including the receptionist and other patients in the clinic lobby, medical specialists whom the woman visits, and the personnel of the maternity ward where she goes to deliver her baby.”

But disclosures can also occur in places other than healthcare settings. A woman’s ex-partner may threaten to disclose her HIV diagnosis; in a few such cases known to EVA, ex-partners used this pretext to extort money from the woman. Telling them that such disclosure is a criminal offense has usually been enough to stop the blackmail.

Sometimes, the HIV status disclosure can lead to discrimination in the workplace. Once a woman living in a small town contacted Peer to Peer asking for help. She worked as a cleaner in a store, and her director had somehow learned about her HIV status. He told her either to provide proof that she was negative or to leave her job, so she was forced to leave. At the time she contacted Peer to Peer, she needed emotional support even more than legal advice. It would have been too hard for her psychologically to stay in her job, even though she was right and her employer was not legally permitted to demand proof of negative HIV diagnosis from employees. The only exceptions, i.e. occupations which do require an HIV test, are defined by a Government Decree. ¹Government Decree of 4 September 1995 No 877 “On approval of the types of positions in certain professional occupations, industries, enterprises, institutions and organizations for which an HIV test is required as part of mandatory health checks before and, periodically, throughout the duration of employment.”

Adoption Issues

In Russia, people living with HIV are not allowed to adopt or to foster children. Article 127 of the Russian Family Code contains a list of diseases and conditions making a person ineligible for adopting or fostering a child or being a legal guardian. Such conditions include ongoing infectious diseases before they are officially declared resolved and the person is taken off medical observation. But people living with HIV remain on medical observation for life. However, HIV today is a chronic, manageable condition. The government has undertaken to supply the antiretroviral therapy (ART) to HIV-positive citizens. In people who take ART regularly as prescribed, the viral load drops to very low levels making HIV transmission to others effectively impossible, as has been shown by extensive research in and outside Russia. Nevertheless, the discriminatory law still prohibits people living with HIV from adopting children.

The situation, however, is gradually changing. Back in 2010, Svetlana Izambaeva, an HIV-positive woman from Kazan, was able to become the legal guardian of her underaged brother after the death of their mother.

In 2019, the Russian family law was amended. In response to a complaint filed by spouses living outside Moscow about being denied the adoption of the wife’s nephew due to the woman’s HIV-positive status, the Russian Constitutional Court ruled on 21 June 2019 that banning adoption by HIV-positive people was unlawful. The Constitutional Court held: “The international community has by now recognized that a person with HIV should not be considered a public health threat, since the human immunodeficiency virus, albeit infectious, cannot be transmitted just by the infected person being present in a country, via casual contact, by air or by sharing food or water; instead, [HIV] is transmitted via specific types of contacts which are almost always private.”

On 29 May 2019, the president signed the law allowing people living with HIV and hepatitis C to adopt children who already live with them, subject to a court decision. Now Russian courts can make exceptions and authorize adoptions by HIV-positive people in cases where the child has lived with the adoptive parent or guardian for a sufficiently long time.

Liability for transmitting HIV to others or placing others at the risk of being infected

Another example of outdated legislation that criminalizes people with HIV is Article 122 of the Russian Penal Code that imposes liability for infecting another person with HIV or placing them at risk of contracting HIV.

Its enforcement can lead to unintended negative consequences. In particular, some people may suspect having contracted HIV but refuse to get tested or to show up at the AIDS Centre, fearing criminal liability. ² During their first visit to an AIDS Center after testing positive for HIV, each person is required to sign a paper stating that they have been informed of liability for transmitting HIV and for placing another person at risk of contracting it.

In Article 122 cases which involve sexual partners no direct evidence is typically available and the burden of responsibility for both partners’ safety and health is automatically placed on the person living with HIV.

Academician Vadim Pokrovsky, head of the Federal AIDS Centre, notes that “far more important is awareness-raising and educating people about what they can do to avoid infecting others. This article has been enforced in cases without any risk of transmission.”

According to EVA, the association has been involved in the defence of an HIV-positive young girl who faced charges under Article 122, part 1, of the Russian Penal Code (deliberately placing another person at risk of contracting HIV). The 17-year-old woman dated a 31-year-old man whom she had met on a social networking site. She did not tell him about her diagnosis. When they had sex, she suggested using a condom, but the man refused. After several dates, the woman started making hints about her HIV status by telling her partners stories about a friend of hers living with HIV. The man insisted on having HIV tests. He tested negative, and the woman tested positive. The man took her to court, wishing to punish her for not being open with him. The prosecutor requested to sentence the woman to 12 months’ restriction of liberty.

The case for defence was that the woman had no intent to transmit the virus, therefore there was no corpus delicti. It followed from her statement that she did not want to infect the man but was only indifferent: she suggested using a condom but did not disclose her diagnosis. The defence succeeded in having her sentence reduced to two months.

In May 2019 in St. Petersburg, in a widely discussed case of potential HIV transmission, the local child welfare authorities removed a newborn from a woman and filed for termination of her parental rights after she refused the ART and chose to breastfeed her baby. ³ Breastfeeding does carry a risk of HIV transmission. Breastfeeding may be responsible for up to 20% of mother-to-child HIV transmissions or more, depending on a variety of factors such as the duration of breastfeeding, the woman’s viral load, and others.

The proceedings lasted for more than six months. While the case was pending, the baby spent four months at an infant institution. At the same time, having considered a custody request from the baby’s father, a court ruled in his favour on 13 September 2019 and returned the child to the family. Then on 11 November 2019, the decision was made not to terminate the mother’s parental rights but only issue a warning to her.

The cases described above caused controversy both in the mass media and among the public, including people living with HIV. Debates continue around Article 122, but there is hope that just as the Family Code, it will eventually be amended to reduce discrimination against Russians living with HIV.