Molecular HIV Surveillance “a perfect storm” in the context of HIV-related criminalisation

A new briefing paper published today by Positive Women’s Network-USA on behalf of the HIV JUSTICE WORLDWIDE coalition aims to support people living with HIV, activists, legal experts, and human rights campaigners in understanding the complexities and consequences of molecular HIV surveillance (MHS). 

Molecular HIV Surveillance: A global review of human rights implicationsprovides a detailed explanation of what MHS is and how it is used across the globe, including how the technology works, where it is being conducted, and by whom. The paper describes growing human rights concerns relating to the use of this technology and goes on to list a number of recommendations for the use of MHS which were gathered from an international literature review and from members of the Expert Advisory Group.*

Molecular HIV surveillance (MHS) is an umbrella term that describes a wide range of practices focused on the monitoring of HIV variants and the differences and similarities between them for scientific research, public health surveillance, and intervention.

To conduct MHS, scientists rely on the results of HIV genetic sequencing tests taken from people living with HIV – these tests are often done before prescribing HIV medication to determine if the individual has a strain of HIV that is resistant to certain treatments. Interest in, and use of, MHS for reasons other than tailoring treatment regimens is increasing globally, however. Of particular concern, in some regions, MHS is being conducted and HIV data is being shared in ways that put the rights and safety of people living with HIV in jeopardy. 

“HIV is highly stigmatised and communities that are most vulnerable to acquiring HIV are already highly policed and at risk for violence” said Naina Khanna, co-executive director of Positive Women’s Network-USA, a US-based membership organisation led by women and people of transgender experience living with HIV. “In more than 30 states in the US alone, and over 100 countries around the world, people with HIV can be criminalised on the basis of their health condition. Taking this kind of data from people without their consent or knowledge and storing or sharing it without adequate protections is extremely risky and could come at the cost of someone’s personal safety, their livelihood, and in the case of HIV criminalisation, their freedom.”

The paper highlights how HIV experts and advocates have raised a range of human rights concerns about this technology. These include: 

  • Consent and autonomy; 
  • Lack of community consultation; 
  • Increased stigma on targeted communities; 
  • Privacy and data protections; 
  • Whether or not the technology can be used to “prove” direct transmission; and,
  •  How MHS may intensify HIV criminalisation within communities who are already marginalised and oppressed.

Edwin J Bernard, Executive Director of the HIV Justice Network and global co-ordinator of the HIV JUSTICE WORLDWIDE coalition added: “MHS treats people living with HIV as ‘clusters’ and targets of public health interventions, rather than the beneficiaries of public health. When you combine MHS with HIV criminalisation it’s a perfect storm. That’s why I commissioned PWN-USA to produce this briefing paper as a first step to understand the problems and to suggest a range of possible solutions. With increased knowledge on the practices of MHS, individuals and organisations can be better equipped to advocate for ending research and surveillance practices that have the potential to harm the rights, autonomy, and well-being of people living with HIV.”

The paper provides wide-ranging recommendations for change aimed at various stakeholders, highlighting five key areas of action:

  1.   Take seriously and act upon community concerns about MHS.
  2.   Respect the bodily autonomy and integrity of people living with HIV in all our diversity.
  3.   MHS implementers must demonstrate a clear public health benefit that outweighs the potential harms of MHS, including by ensuring protections (i.e., data privacy, legal protections, social harms prevention, etc). These demonstrated benefits of MHS must measurably include people living with HIV.
  4.   Providers ordering HIV sequencing must inform people living with HIV about how their blood and data are being used for MHS purposes and be allowed to withdraw the consent if they so wish, without fear of negative consequences to their HIV treatment and care.
  5.   Implementers of MHS should publicly advocate against punitive or coercive laws and policies aimed at people living with HIV and ensure that MHS is never used in criminal, civil, or immigration investigations or prosecutions.

The paper is available to download now in English at https://www.hivjusticeworldwide.org/en/mhs/ 

It will be available soon in French, Russian and Spanish. 

Watch the launch video below:

Follow the online conversation on Twitter by using the hashtags #EndMHS #DataPrivacy #DataProtection #HIVJustice and by following @HIVJusticeNet @uspwn

We gratefully acknowledge the financial contribution of the Robert Carr Fund to this report.

*MHS Expert Advisory Group

  • Naina Khanna & Breanna Diaz, Positive Women’s Network-USA
  • Edwin J. Bernard, HIV Justice Network
  • Marco Castro-Bojorquez, HIV Racial Justice Now (in memoriam)
  • Brian Minalga, Legacy Project
  • Andrew Spieldenner, US People Living with HIV Caucus
  • Sean Strub, Sero Project

Report: End HIV criminalisation to address LGBT+ inequities

A new report published by the Global Equality Caucus examines what elected officials can do to ensure LGBT+ people receive equitable access to HIV healthcare.

The report titled Breaking barriers in HIV: Action for legislators to address LGBT+ inequities, includes ten recommendations for legislators and others to take forward, including repealing or modernising outdated HIV criminalisation laws, and doing more to safeguard health data privacy.

The report notes that HIV criminalisation laws are “out of step with modern scientific understanding and perpetuate outdated HIV stigmas.” Removing such laws would help to tackle prejudice and refocus HIV as a public health crisis.

Also relevant to our ongoing work on molecular HIV surveillance, the report further recommends that where data is collected, anonymity should always be assured, and “this applies to HIV testing, immigration status, or whatever other circumstances that may place LGBT+ people in danger should their health data be shared with other government authorities.”

Parliamentarians have a responsibility to ensure government departments respect the privacy of citizens and that health data is not being shared with agencies that could present additional barriers to the lives of LGBT+ people, such as immigration authorities or justice departments.

US: Supreme Court agrees that sex offender law struck down by Louisiana Supreme Court is unconstitutional

Supreme Court Declines To Hear Louisiana’s Defense of a Law That Stamped ‘SEX OFFENDER’ on Driver’s Licenses

The policy imposed an additional form of ritual humiliation on a reviled category of people without any plausible public-safety justification.

The U.S. Supreme Court today declined to hear Louisiana’s appeal of a decision against its 2006 law requiring that people on the state’s sex offender registry carry IDs or driver’s licenses that say “SEX OFFENDER” in orange capital letters. A year ago, the Louisiana Supreme Court concluded that the requirement amounted to compelled speech and could not be justified by the state’s legitimate interest in protecting public safety. In addition to raising First Amendment issues, Louisiana’s now-moribund law illustrates the longstanding tendency to impose additional punishment on people convicted of sex offenses in the guise of regulation.

The registries themselves, which require sex offenders to regularly report their addresses to local law enforcement agencies so that information can be made publicly available in online databases that also include their names, photographs, and physical descriptions, are primarily punitive, exposing registrants to ostracism, harassment, and violence while impeding their rehabilitation by making it difficult to find employment and housing. There is little evidence that the sort of public notification practiced by every state delivers benefits that outweigh those costs. Louisiana’s experiment in ritual humiliation, which branded registrants with orange letters they had to display in every transaction that required producing a government-issued ID, compounded those costs without offering any plausible benefits.

One problem with sex offender registries is that they cover a wide range of crimes, including many that do not involve violence, force, or physical contact. While people tend to imagine rapists or child molesters when they hear the term sex offender, the reality can be quite different, in ways that are important in assessing the danger that a person might pose to the general public or to people in particular age groups.

In Louisiana, for example, mandatory registration applies not only to crimes like rape and sexual assault but also to nonviolent offenses, such as voyeurism, possession of child pornography, consensual sex between adults who are closely related, sex between high school teachers and students (even when the student has reached the age of consent), and employment of a minor in “any practice, exhibition, or place, dangerous or injurious to the life, limbs, health, or morals of the minor.” Robert Suttle, who posted the picture of his driver’s license shown above, was forced to register because he was convicted of intentionally exposing someone to HIV, which resulted in a six-month prison sentence. After a bad breakup, he says, his former partner told the police he had not been informed of Suttle’s HIV status.

The second line of each record in the state’s registry shows the offender’s “tier,” which corresponds to various crimes classified by severity, ranging from Tier 1 (least serious, requiring registration for 15 years) to Tier 3 (most serious, requiring lifetime registration). Further down in the record, you can see the statute under which the registrant was convicted (e.g., “carnal knowledge of a juvenile”), which still omits potentially important details.

The driver’s license warning required by Louisiana’s law did not provide even that much information, meaning that anyone who saw it was invited to assume the worst. Tazin Hill, the man who challenged the law, completed his prison sentence in 2013. He was convicted of having sex with a 14-year-old when he was 32, which placed him in Tier 1. But anyone who saw his license had no way of knowing the nature or severity of his offense. Rebelling at this government-imposed badge of shame, Hill excised the “SEX OFFENDER” label from his license and covered the gap with clear tape, which resulted in the criminal charges that gave rise to this case.

Another problem with sex offender registries is the mistaken assumption that people who fall into this broad category are more likely to commit additional crimes than, say, robbers, burglars, or arsonists. When it upheld mandatory “treatment” of sex offenders in prison, for example, the Supreme Court relied on a highly dubious recidivism estimate that was repudiated by its original source but has nevertheless been cited repeatedly by lower courts. The “SEX OFFENDER” stamp on Louisiana driver’s licenses, even more than the registry, promoted such erroneous fears by implying that the bearer posed an ongoing threat, no matter the details of his crime, how long ago it occurred, or how he had behaved since he completed his sentence.

The empirically unjustified belief that sex offenders are highly prone to recidivism is especially inaccurate and damaging when applied to people convicted as minors, who are included in Louisiana’s registry and therefore had to carry “SEX OFFENDER” IDs or driver’s licenses. Judy Mantin, who this year testified before a state legislative committee that was considering revisions to Louisiana’s law in light of the state Supreme Court’s ruling, said her son “made a mistake” when he was 14 but today is “a very productive citizen.” She argued that “our children deserve a second chance in life.”

Legislators ostensibly have made the same judgment regarding adults convicted of sex offenses, who have notionally paid their debt to society once they complete their criminal sentences. Yet legislators imply otherwise by imposing additional burdens on those people for decades after their official punishment. In this case, any interaction involving a driver’s license—e.g., with cashiers, hotel clerks, bank tellers, employers, landlords, election officials, or airport security screeners—became a new invitation to close-range fear and loathing.

What was the justification for this requirement, which added to the burdens imposed by registration, public notification, and residence restrictions? The state argued that the “SEX OFFENDER” label facilitated law enforcement by alerting police officers to a person’s status. But police already could readily check that by consulting the state’s database. And as the Louisiana Supreme Court noted, the state could have eliminated even that slight inconvenience with a more discreet label: “A symbol, code, or a letter designation would inform law enforcement that they are dealing with a sex offender and thereby reduce the unnecessary disclosure to others during everyday tasks.”

Such a solution would not be adequate, the state argued in its petition to the U.S. Supreme Court, because “the Louisiana Legislature concluded that the public, and not merely law enforcement, needs to know of a sex offender’s status under limited circumstances.” Such as?

“A property manager needs to know a sex offender’s status when leasing an apartment—or the manager might incur liability if a tenant is raped on the premises,” the petition said. “A church or Red Cross facility may need to know a person’s status as a sex offender when providing shelter from a storm. People trick or-treating on Halloween may need a quick way to verify that their children are safe from predators.”

During a lower-court hearing, one of the state’s lawyers offered another example:

If I’m deciding who I want to be my babysitter and I know that I don’t want a sex offender to babysit my children, I say, “OK. I’d like to see your ID before I allow you to babysit my children.” And, “Oh, it says ‘sex offender.’ I’m not going to hire you.”

The Halloween scenario suggests the state’s desperation, not only because this particular hazard is an urban legend but also because it is difficult to imagine a situation in which parents would demand to see the driver’s licenses of neighbors handing out candy to trick-or-treaters. Even when the concerns are more reasonable, the public registry, for better or worse, already allowed anyone to look up an individual and see if he was listed; that was supposedly the whole purpose of creating a publicly accessible database in the first place.

“Louisiana’s branded-identification regime was an outlier in singling registrants out for public opprobrium,” Hill’s lawyers noted in their brief urging the Supreme Court not to consider the state’s appeal. “Just two other States require identification cards to display phrases like ‘SEX OFFENDER,’ while only six States have laws that require identification cards to include other types of sexual offense disclosure—typically a symbol or statute number recognizable only to law enforcement.”

Even as an outlier, Louisiana’s law suggests how ready politicians are to support practically any burden on sex offenders, whether or not it makes sense as a tool to promote public safety. Policies like these serve no useful purpose, but they do make life harder for a reviled category of people whose punishment never ends.

[Feature] It Takes More Than A Village to End HIV Criminalisation

The proverb says, “It takes a village to raise a child”. But what if a mother in the village is living with HIV, and some of the villagers stigmatise her? What if that stigma creates a situation where the mother living with HIV is unjustly criminalised because of her HIV status? Then it takes more than a village to get justice for that woman. It takes a global movement to end HIV criminalisation to sensitise and train lawyers and expert witnesses.  It takes national communities of women living with HIV to support that woman following her release, and to educate the community in which she lives about HIV.

Introduction

In 2016, a Malawi court convicted a woman living with HIV of “negligently and recklessly doing an act likely to spread the infection of any disease which is dangerous to life” under section 192 of the Malawi Penal Code. She had attended a village meeting with her baby which she breastfed as usual before passing the child to her grandmother. Another woman then asked her to hold her baby. It was alleged that this child began breastfeeding briefly before the woman realised what was happening. The child’s mother then reported the incident to the police. The woman was arrested and without legal advice or representation, pleaded guilty, was convicted, and sentenced to nine months’ imprisonment with hard labour.

The circumstances of the case are all the more shocking because women living with HIV are encouraged to breastfeed in Malawi (and in other countries with high HIV prevalence and settings in which diarrhoea, pneumonia and undernutrition are common causes of infant and child deaths) and because HIV-related prosecutions involving breastfeeding are exceedingly rare. Unfortunately, we have seen an increase in the number of such cases since 2016. HJN is working to address this in a number of ways because we believe there should never be prosecutions of women living with HIV for breastfeeding.

In addition, the accused woman was taking antiretroviral therapy. The chances of HIV transmission through even long-term breastfeeding are very low (which is why WHO guidelines recommend it when access to infant formula and clean water are limited) and the chances of transmission during the brief period the baby allegedly fed were infinitesimally small. In fact, the accused woman’s own child, who was routinely breastfed, has not acquired HIV, calling into question any suggestion that she intended to cause harm to the other woman’s child. Perversely, for a system that unjustly condemned her for risking harm to the other woman’s child, her own baby was imprisoned with her, without any arrangements for appropriate feeding and care, negating any notion that the legal system’s purpose was to protect children.

Following media reports of her initial conviction, numerous individuals and organisations – including HJN and our HIV JUSTICE WORLDWIDE partners, ARASA and SALC – became involved in the case, ultimately changing the outcome for the woman and her family, and laying the groundwork for further anti-HIV stigma advocacy and education in the region. Her story demonstrates the vital role that education, training, strong networks, and community play in the pursuit of HIV justice.

Living with HIV-related stigma

When interviewed at her home in 2019, the woman referred to as “EL” talked about her life:[1]

[1] The initials EL are used instead of her full name following a court order of anonymity to protect her privacy. The interview took place in 2019, during the village visit described later in this article.

“As kids, there were the two of us — me and my brother. My parents faced challenges raising us. Finding the basic necessities like soap and food was a tall order, let alone talking about going to school. It was difficult to get learning materials as well as proper clothes to wear at school. I worked hard in class but couldn’t get past Standard 5 at primary school. Eventually I dropped out, and my brother did the same, … My daily life was taken up doing house chores just like any other girl in the village, as well as helping my parents with farming. At 16, I got married.”

EL further described how she was diagnosed HIV-positive in 2015 after a de facto compulsory HIV test at an antenatal visit. She already had two children and was pregnant with her third. She had heard about HIV but did not know much about it. EL said that the healthcare workers provided a lot of assistance, giving her accurate information about HIV, including the importance of adhering to her antiretroviral treatment (ARVs).

EL and two of her children. Photo: Amos Gumulira/UNDP Malawi

EL said that she generally enjoyed life in her village, although at times she was subject to stigma and discrimination:

“When I went to fetch water at the community borehole, people would laugh at me, and whenever I wanted to participate in community work, you would find pockets of community members talking ill about me. Some people used to insult me, calling me names. But I persevered because my relatives, including the Village Headman himself, gave me support and always stood by my side.”

Members of EL’s family also faced discrimination. “Due to lack of information, a lot of people thought HIV was hereditary and because I was diagnosed HIV-positive, this meant that all my family members had HIV, and they were discriminated against,” EL said.

EL wonders if more could have been done to help her fight stigma. In particular, EL gained a lot of knowledge about HIV from the counselling she got when diagnosed, but perhaps she could have been better equipped with information to share with people in her community:

“A lot of people don’t know that if you adhere to ARVs, you reduce the risk of transmitting HIV to others. This information needs to be passed on to many people. There are also other issues to do with ARVs. A lot of people don’t have adequate information on the effects of ARVs and at the end of the day, they start pointing fingers at each other, giving people room to start speculating about issues to do with witchcraft.”

EL’s prosecution had repercussions for her whole village. One woman from the community explained:

“I was there and very close to where EL was sitting. Yes, she was carrying another woman’s child. This other woman had given the child to EL for safe keeping while she went to stand in a queue, but honestly speaking, I didn’t see EL breastfeed the child. I just heard some people who were sitting a distance from where we were sitting, as they started pointing accusing fingers at her.”

She said that things moved so fast that before they could think of anything to stop what she called “the rumour.” It had gotten out of hand and people started saying that EL had intentionally breastfed the child to transmit HIV.

After receiving a summons, EL voluntarily turned herself in at the police station. She was accompanied by the Village Headman (her grandfather) who wanted first-hand information about what crime she was alleged to have committed. That same day, police transferred EL to a larger town, where she was remanded for three days. At the age of 29, this was the first time that EL had ever left her village.

Days later, she appeared in court and the charge sheet was read out. EL recounted that she had not understood what was happening and could not make arguments because she had no legal representation. EL agreed with the summary of events as they were described, so she was found guilty and was imprisoned together with her youngest child.

She described life in prison as “hell”:

“After a week, my brother showed up to give me my ARVs. All this talk about a woman with HIV breastfeeding. I breastfed but I also found it tough to feed my baby while in prison because there was no provision of special food for babies. We were eating nandolo (pigeon peas) almost every day with Msima ya Mgaiwa (maize meal). And there was only one toilet for a cell of more than 50 people.”

After some time, relatives and other members of her community started visiting, giving her money she could use to buy soap and food for her baby. “When we heard from our Village Headman that she had been arrested, we were so devastated”, a woman from EL’s village explained. “We raised funds for some members to go and give her support only to learn that she had been transferred to one town, then another, but some of us did manage on several occasions to visit her and offer our support when she was in prison.”

Then, out of the blue, EL received a message that some people had come looking for her. She went to meet them: a lawyer, Wesley Mwafulirwa, and his paralegal. They explained why they were there and asked if she would like them to appeal on her behalf. She accepted enthusiastically. “I was excited but at the same time I was confused because I could not believe that I could be so lucky to have these people come to help me.”

Fighting the charges

Solicitor Wesley Mwafulirwa had volunteered to attend training to address legal barriers to prison health and human rights presented by the Southern African Litigation Centre (SALC). He travelled from Malawi to South Africa to attend the training which addressed useful regional and international mechanisms, and presented insights about legal practice and strategic litigation to support prison health and human rights, particularly for those facing heightened vulnerability to HIV and TB.

Wesley Mwafulirwa Photo: Amos Gumulira/UNDP Malawi

At the training, two lawyers spoke about their pro bono work. Wesley remembers one of them, Allan Maleche (Executive Director of KELIN), saying that each participant should take at least one case when they go back to their country. It was a turning point in Wesley’s career.

He had not been home long when he saw an article in the newspaper about an HIV-positive person convicted for trying to spread HIV. That person was EL.

Wesley, who lives in a small town in northern Malawi, drove for more than ten hours to get to the jail where EL was incarcerated. He explained his determination, saying “I was so fired up! I’d just come from SALC’s training … and I said, ‘I want to take up this case’.”

Wesley interviewed EL and offered to take her case pro bono. Wesley contacted SALC, who offered technical support. Their first step was to get an order for anonymity to protect EL’s identity and gain greater control over media reporting. Next, they faced an ethical question. They wanted to challenge the constitutionality of the law but that would take a long time. Because EL was in prison, they decided to undertake a criminal appeal instead. They applied for EL to be let out of custody on bail pending appeal. This is usually a difficult application to win, but they were successful and EL was released from prison.

In the appeal, the court was asked to consider whether the conviction could be justified, whether the penal provision was constitutional (arguing it was overly broad and vague), and whether the sentence was manifestly unjust. Wesley used his learnings from the SALC training to raise international principles and instruments relating to sentencing, which the court referenced and upheld. Michaela Clayton, then Executive Director of the AIDS and Rights Alliance for southern Africa (ARASA), and now a member of HJN’s Supervisory Board, provided expert testimony. Another expert witness, Dr Ruth Brand, identified through HJN’s global network, gave expert scientific evidence to show the risk of HIV transmission had been “infinitesimally small.”

The case was heard by Honourable Justice Zione Ntaba, who held that the proceedings in the trial court were irregular and “blatantly bias” against EL, compromising her right to a fair trial. Justice Ntaba found the charge sheet had been defective and therefore EL’s plea should not have been recorded as guilty. She noted the law must be sensitive to the accused’s knowledge or belief (or lack of) that HIV would be transmitted. Justice Ntaba decided the conviction could not be justified, acknowledging human rights principles against the overly broad criminalisation of HIV non-disclosure, exposure, or transmission. EL’s sentence was set aside. (The Constitutional challenge was referred to a full-member panel of the Constitutional Court although the case was not pursued.)

Notably, Justice Ntaba was a member of the African Regional Judges Forum to discuss HIV, TB and Human Rights (a process which is owned and planned by the judges and run with support from UNDP and funding from the Global Fund).

Fighting the stigma

Shortly after EL’s arrest, the Coalition of Women and Girls Living with HIV and AIDS in Malawi (COWLHA) and the Malawi branch of the International Community of Women Living with HIV/AIDS (ICW-Malawi) discussed the case at a roundtable meeting. At first, everyone was surprised and even laughed, questioning how she could have breastfed someone else’s child. They had never heard of a criminal case involving infant feeding and did not understand what they were dealing with.

During their discussions, COWLHA and ICW-Malawi agreed that the prosecution of EL was a manifestation of stigma and misinformation about HIV in the community. They learned more about the unjust measures that EL had experienced, like being imprisoned without being given a chance to be heard and not being given the chance to prepare and take her medication and things she needed to care for her child. COWLHA and ICW decided to get involved.

Representatives from COWLHA and ICW meet with members of EL’s village. Photo: COWLHA/ICW

Concerned that EL could face social and community hostility after her release, COWHLA and ICW planned a visit to the village to provide psychosocial support to EL and to work with traditional community leaders to provide community sensitisation on HIV, addressing issues of stigma and discrimination. Their efforts helped change some community members’ ideas about HIV.

The community formed two support groups— one for youth and another for adults (notably both were predominantly female groups). They have conducted numerous activities, including home visits, supporting children to go to school, helping the elderly with house chores, and they have a garden where they grow vegetables and rice. They hoped to access loans to become self-reliant. They also had a list of issues they wanted to learn more about, including preventing mother-to-child transmission, sexual and reproductive health, positive living, stigma and discrimination, and treatment literacy.

Visiting EL at home

In September 2019, a three-member team comprising Edna Tembo (Executive Director of COWLHA), Charity Mkona (ICW Board Chair), and Peter Gwazayani (media consultant), set out for EL’s village.

The team was welcomed by the Group Village Headman, who took them to EL’s house. EL recognised Edna from the work COWLHA and ICW-Malawi had done in the community previously. EL welcomed the team with a big smile.

EL and her husband looked cheerful as they laid a mat on the veranda of their house for the visitors. Her mother later joined the discussion.

EL was interested to learn that HJN wanted to write about her case and the type of interventions that had been helpful, to share the story with advocates for HIV justice around the world.

EL recounted that when she returned to the village, “most members of my community received me with happiness, particularly my relatives. The day I arrived, they were jubilant. They celebrated with songs that we normally sing during special occasions in the village.”

COWLHA ED Edna Tembo and Charity Mkona of ICW chat with EL, her husband and her mother (at far distance). Photo: COWLHA/ICW

EL lives with her husband, five children and her mother in a compound made up of three grass thatched houses. She introduced her children:

“The oldest is 13 and she goes to school, as do the second and third. The fourth, a little girl, is the child I was with in prison. She has not yet started school. And then there is this one, who I am breastfeeding. She is the fifth one. She has been tested for HIV on two occasions and will be going for the last test soon. The other two tests have come back HIV-negative.”

EL’s accuser and her family still lives in the same village which has presented some difficulties. EL said that on several occasions she had tried to greet them when they passed each other, but she had been ignored. “They don’t talk to me but from deep down in my heart, I have no grudges against them,” EL said.  “I am just living my normal life,” EL says, although now she says that she would never agree to carry anybody else’s child, for any reason.

Moving beyond criminalisation

With respect to the community-level interventions, lawyer Annabel Raw, who worked at SALC during the time they supported the EL case said:

“As lawyers, we would never have thought to consider such an intervention had ICW-Malawi and COWLHA not shared their insights and been willing to support the client and her community. Their work has been so important to ensuring that meaningful justice was done to combat the actual root cause of the prosecution — stigma and discrimination — and to reconcile EL with her community.”

Engaging with the community also influenced ICW-Malawi and COWLHA’s thinking about HIV criminalisation. COWLHA’s Edna Tembo noted that:

Supporting people who have been prosecuted, particularly women, gives them power, … However, it is very important to stress that psychological support is absolutely vital for those who have been prosecuted. That includes family support, and a supportive community environment enabling acceptance of an individual accused.”

Tembo was also quick to emphasise that there is more work to be done. That work includes awareness raising and ongoing support to the community, especially to identify and train volunteers, empowering them to provide services at community level and to link them to health facilities and district offices for continued support and mentorship.

EL carries her youngest child home. Photo: Amos Gumulira/UNDP Malawi

EL described her dreams for the future:

“My wish now is to see my children progress in school so that they become productive citizens in this community and help it grow. That’s my dream. If they get educated, they will be able to stand on their own and support others. My husband is not employed and it is a challenge to get money for school fees for our children. We would love to get a loan or training to have greater knowledge of economic empowerment because we want to be self-reliant. We would then love to lease some land to grow rice to sell to pay back the loan.

“It’s also my wish to see the lives of all people in the community uplifted. We farm but on a small-scale. If we were to be supported with funds, I’d love to see the community establish big rice farms, working in groups, harvesting for consumption and for sale. In so doing, we would be able to uplift our lives for the better.”

Further Information

Learn more about Wesley’s experiences in EL’s case here and here.

Learn more about the African Regional Judges Forum here.

The full High Court judgement is available here, with a summary included here.

Read more about the successful HIV and AIDS Management Act community advocacy here.


This article is based on information provided by ICW-Malawi and COWLHA following their visits to EL’s village, and an interview with Wesley Mwafulirwa published by UNDP. HJN provided financial and logistical support for the village visits thanks to a grant provided to the HIV Justice Global Consortium from the Robert Carr Fund for civil society networks.     

Colombia: Constitutional Court rules in favour of soldier living with HIV, reaffirming his constitutional rights

The battle an active soldier diagnosed with HIV won against the Army in Colombia

Translation via Deepl.com. For original article in Spanish, please scroll down.

To protect his fundamental rights to social security, the Sixth Chamber of the Constitutional Court ruled in favor of an active soldier diagnosed with HIV.

In 2015, an active soldier was evaluated by the Military Health Directorate of the National Army through a Medical Labor Board, there, he was evaluated for “the possible decrease of psychophysical aptitudes” after an HIV diagnosis, but he was not guaranteed treatment or follow-up by the institution.

That is to say, the soldier has had to comply with his treatment and all that it entails, in a private manner.

The 2015 report “was incomplete”, since it did not assign a percentage of loss of working capacity.

Nor did it establish criteria to determine the progress of his infection or the subsequent deterioration of his clinical conditions, the Constitutional Court explained.

In the tutela filed by the uniformed officer, three years later the Directorate denied him the possibility of repeating that evaluation “to determine the levels of his work reduction due to suffering from other illnesses that were aggravated as a result of HIV.”

Decision of the Court

Following the decision, the Sixth Chamber of Review, with Judge Gloria Stella Ortiz Delgado presiding, reaffirmed that persons with HIV are entitled to special constitutional protection.

In the specific case, the Constitutional Court argued: “The assessment carried out by the DISAN EJC in 2015 was incomplete, lacked motivation and did not analyze the medical history of the plaintiff in a comprehensive manner”.

Therefore, the Constitutional Court ordered the formation of a new Labor Medical Board.
It also recalled the obligation to respond in a timely manner to the requests made in this type of proceedings, especially in the case of members of the Army. Finally, the DISAN EJC was warned about the duty to provide the medicines required for the treatment of HIV.

Thus, the Chamber protected the rights to social security and administrative due process of the professional soldier on active duty.

He had been denied the procedures to monitor his disease and provide him with the necessary treatment.

This decision of the Court sets a precedent for members not only of the Army, but of the public force in the country.


Para proteger sus derechos fundamentales a la seguridad social, la Sala Sexta de la Corte Constitucional falló a favor de un soldado activo, diagnosticado con VIH.

Noticias Colombia.

En el 2015 un soldado activo fue evaluado por la Dirección de Sanidad Militar del Ejército Nacional a través de una Junta Médico Laboral, allí, se le evaluó por “la posible disminución de las aptitudes psicofísicas” tras un diagnóstico de VIH, pero no se le garantizó tratamiento ni seguimiento en la institución.

Es decir, el militar ha tenido que cumplir su tratamiento y todo lo que conlleva, de manera particular.

El dictamen del 2015 “resultó incompleto”, ya que no asignó un porcentaje de pérdida de capacidad laboral.

Tampoco estableció criterios para determinar el progreso de su infección o el posterior deterioro de sus condiciones clínicas, explicó la Corte Constitucional.

En la tutela que interpuso el uniformado, tres años después la Dirección le negó la posibilidad de repetir esa evaluación “para determinar los niveles de su disminución laboral por padecer otras enfermedades que se agravaron por consecuencia del VIH”.

Decisión de la Corte

Tras la decisión, la Sala Sexta de Revisión, con ponencia de la magistrada Gloria Stella Ortiz Delgado, reafirmó que las personas con VIH son titulares de una especial protección constitucional.

En el caso concreto, la Corte Constitucional argumentó: “La valoración efectuada por la DISAN EJC en 2015 resultó incompleta, incurrió en falta de motivación y no analizó la historia clínica del accionante de forma integral”.

Por lo tanto, la Corte Constitucional ordenó conformar una nueva Junta Médico Laboral.
También, se recordó la obligación de responder oportunamente las solicitudes elevadas en este tipo de trámites, especialmente cuando se trate de miembros del Ejército.
Finalmente, se advirtió a la DISAN EJC sobre el deber de suministrar los medicamentos que se requieran para el tratamiento del VIH.

Así la Sala protegió los derechos a la seguridad social y al debido proceso administrativo del soldado profesional en servicio activo.

Se le habían negado los procedimientos para hacerle seguimiento a su enfermedad y brindarle el tratamiento necesario.

Esta decisión de la Corte sienta un precedente para miembros no solo del Ejército, sino de la fuerza pública en el país.

Russia: In 2021, people living with HIV are still facing criminalisation, stigma, healthcare denial, dismissal and deportation

Who protects people with HIV in St Petersburg and how?

Stigma, denial of health services, dismissal, deportation – these are just some of the problems HIV-positive people in Russia can face. For 25 years Positive Dialogue NGO helps people with these problems.

A quiet street in the centre of St. Petersburg, a yard with bright graffiti – a portrait of a girl with long hair and the text Lu Blue. No other graffiti so far.

Mikhail Stupishin, the head of Positive Dialogue, meets me at the door. A few steps down, and we are in a bright office. The Positive Dialogue only recently moved into the building, because for years before it was located on the grounds of Botkin Infectious Diseases Hospital.

– The first quarter of the 21st century is coming to an end and people still have HIV-phobic cockroaches in their heads,” laughs Mikhail, pouring coffee and talking about the move. – Four premises were refused to us due to the nature of our business. At the preview, we explained that we are now focused on individual counselling and not on mass events, we said that we have a flow of clients, but not as a mausoleum, that we work with a socially significant disease – HIV infection. We were told: “Yes, yes, yes, everything is great”. And when it came to concluding an agreement, they said: “We looked at the website what you do. This is too extreme for us”.

I am reminded of Anna, the heroine of my text ‘Anna and Her Victories’, a mentee of Positive Dialogue. What is extreme is the treatment she and many other people face time and again because of their HIV-positive status. For example, when her own mother, an experienced health worker, forces her daughter to eat from separate dishes even though there is no contact-domestic transmission of HIV. Or when a person is not wanted to work because of his/her HIV status, despite the fact that thanks to therapy (free and accessible) his/her viral load has been undetectable for a long time – this means that he/she cannot infect anybody in any way. Anna told us that in the most desperate situations she called Positive Dialogue and thanks to her conversation with lawyer Alexander Loza she solved problems with her job and then with her studies more than once.

Alexander joins Mikhail and me, we shake hands and begin a conversation that lasts more than two hours, but even that time seems short. The problems faced by people with HIV in Russia are too many.

“Positive Dialogue started as far back as 25 years ago. It was founded by Nikolai Panchenko, a lawyer and one of the first registered HIV-positive people in the USSR. He recently celebrated his 70th birthday and handed over the leadership of the organisation to Mikhail Stupishin a few years ago, but Panchenko’s name keeps coming up in conversation – it was he who started the education work, talking about HIV prevention and life with HIV. This is as necessary now as it was a quarter of a century ago.

– Sasha has been working here since 2004, and I joined in 2015,” says Mikhail. – At that time two big prevention projects were launched: HIV prevention among men who have sex with men and HIV prevention among female sex workers. I came upon the recommendation of an acquaintance. I have secondary medical education. I am not a doctor but a paramedic. I know anatomy well, I know pathophysiology well, or at least I knew it, I understand where the legs are growing from.

In addition to his medical education, Mikhail graduated from the University of Culture, and Alexander studied at St. Petersburg State University. A medical doctor and a lawyer, both have extensive experience of working with people in difficult life situations.

– Many people need legal advice,” says Alexander. – Not everyone has the money to pay for a consultation, not everyone wants to talk about their specific problems, and not all lawyers are practiced at it.

– Do they often come to you with work-related issues? – I ask. But it turns out to be not quite what I imagined.

According to Alexander, medical workers who have to undergo compulsory tests, including HIV tests, every year are most afraid of being fired. However, police officers and employees of the Ministry of Emergency Situations also seek advice: contrary to the federal legislation, these agencies impose a complete ban on work for HIV-positive people – they issue local acts on undergoing medical examinations and declare them unfit or limited fit for service.

– Is there anything you can do in such situations?

– Well, back in Soviet times, an act was passed that people with HIV infection could not be commanders of aircraft,” Alexander sighs. – Five or seven years ago, one captain was diagnosed with HIV. He went to the General Prosecutor’s Office, the General Prosecutor’s Office went to the Supreme Court, and the Supreme Court ruled the act illegal. But the man had to disclose his status to everyone. It is not about the court per se – a person’s name can be hidden in the documents. But the employer often puts pressure on the employee, may spread rumours about him.

Mikhail cites the story of his acquaintance, who was literally “eaten up” at work, in the most ordinary office, when he found out about his HIV status. Litigating in such situations can be futile: legally, the case is a win-win – the dismissal is illegal, but they will not give you life at work.

People rarely go to court against employers, and as a rule, it is high-profile cases that change the local normative acts of an organization.

– We have it written into the law that this is discrimination, that the employer will be fined, there is criminal liability,” Alexander says. – But everyone tries to do it quietly: you resign at your own request, you get some severance pay, and you leave quietly (what happens to you next is your problem), while we will be white and fluffy. I always say that fighting for one’s rights is fraught: they can create such conditions that a person will be forced to leave. Constant stress is also bad for the body.

Last year, according to Alexander, the Prosecutor General’s Office tried to issue a local act banning people with HIV from working, but there was an uproar and the agency had to abandon the idea. But the Ministry of Railways and Communication seems to have succeeded in introducing a local ban.

– In general, if you start having problems at work because of your HIV status, the only way out is to look for a normal employer?

– We don’t have a ‘normal employer’ as such,” Alexander shakes his head.

– It’s not so much about the employer,” adds Mikhail, “it’s more about your direct supervisor or upper management if you are in his position.

He recounts cases of people being tested for HIV without their knowledge when they are hired. This practice is, of course, illegal:

– The issue of informing about a person’s status is generally very strict: no disclosure, only at the official request of the court or the prosecutor’s office. Only then the AIDS Centre is obliged to provide information whether the person is registered or not. If a person realises that he or she has not told anyone about his or her status, but the employer has the information, it means that during the medical examination, blood was taken for HIV infection. But, in theory, the employer cannot make any further moves, because the whole story is illegal.

– And what other problems do people come up with?

– Access to medical services,” Alexander answers without thinking for a second. – It happens that a person has to undergo a planned surgery, he knows that he is HIV-positive, and in the medical institution they either try to talk him out of it or redirect him somewhere else, or just put him into a paid ward, even though everything should be free of charge under the MHI.

– They either try to charge him money or refuse to take him at all because of his HIV status,” Mihail says without euphemisms.

– No one says it directly, they start using various medical terminology or “your indications are not right, maybe in a year”. In medical institutions we always recommend to ask for a written refusal. What the doctor says in the corridor, you will not be able to prove anywhere else. The doctor realises that by writing such a refusal he or she will put himself or herself and his or her medical centre in danger. And then the doctors are more likely to put on double gloves and do everything, gritting their teeth, – Alexander is sure.

– And they will do it as well as possible, so I won’t have to come back again,” laughs Mikhail.

– At the same time, everyone treats hepatitis C, which is more dangerous, much more easily,” says Alexander, bewildered. – If you tell dentists that you have hepatitis C, the doctors will take it easier than if you tell them about HIV.

IF YOU MENTION HIV, YOU’LL PROBABLY HEAR: “NO, NO, NO, WE’RE ON OUR LUNCH BREAK, COME BACK NEXT TIME”.

In medical institutions, Alexander and Michael explain, often if a person says they are HIV positive, they are sent to the back of the queue. This is such a small discrimination. They won’t refuse to help, but they will accept him last – to disinfect everything afterwards. This is despite the fact that disposable instruments are used or everything is disinfected after each patient.

– Generally, health workers have instructions to suspect every patient is HIV and hepatitis C positive, to wear gloves and masks in every situation. But when funding is a problem, gloves can be wiped down with alcohol or something else cannot be done.

– And sometimes there is just a flood of patients, and it’s just the human factor.

– But if there is a risk of disease, health workers are immediately put on PEP – free post-exposure prophylaxis. This equates to an occupational injury,” Mikhail sums it up.

But legal recourse is not limited to medical issues either. People who are HIV-positive are increasingly facing blackmail.

– Either a former cohabitant or a former spouse blackmails them,” explains Alexander. – They start threatening that, for example, they will disclose their status to their relatives.

– Can this be dealt with?

– If a person fears it, they can go and write a statement to the police, because it is an invasion of privacy. Such reports are obligatory because we have a Criminal Code. The report will first be investigated, one party will be called, and then the other party will be called. Maybe at this stage the blackmailer will realise that he is doing it for nothing. Sometimes blackmail is attempted by people who are already HIV-positive themselves.

– Maybe both of them were already infected when they met and were afraid to tell each other. We are all afraid,” says Mikhail. – This goes to the issue of self-stigma caused by stigmatization from society. The further into the woods it gets, the harder it becomes to tell your partner. I recently had a consultation: we talked on the phone for an hour and a half (we didn’t have an office at the time). A guy “plus” (tested positive), he has a regular partner who is HIV-negative. The client says: “I know everything, I understand everything, I understand that people live with it, and the story with the pills does not embarrass me.

“BUT HOW DO I TELL HIM? I DON’T WANT TO LOSE HIM, AND I’M AFRAID TO TELL HIM.

This is the self-stigma that emerges thanks to our beloved public, which still believes that HIV infection is collapse and death.

The situation is even more difficult when an HIV-positive person is a citizen of another country. One can avoid deportation only if one has close relatives or a spouse with Russian citizenship. The amendments about relatives, which make life a little easier for foreigners, have only recently appeared and do not always help.

– In one case, I had to file a lawsuit in Moscow against Rospotrebnadzor,” says Alexander. – A Ukrainian citizen has entered Russia. His wife is Russian. The court overturned Rospotrebnadzor’s decision that his stay on Russian territory was undesirable. The man’s wife recently called and said that he had to renew or get a new residence permit, but the police were refusing him on the grounds of his HIV status. They demand a certificate from the AIDS Centre that he is registered there and the AIDS Centre says: “We won’t take him on the register because he is a foreign citizen. All the same, there are legal obstacles.

– And if there are no close relatives who are citizens of the Russian Federation?

– A foreigner is subject to deportation. In the CIS, only two states still deport citizens with HIV: Russia and Armenia. The others have acknowledged that it is not dangerous, and the foreigner himself, knowing that he has HIV, runs to the nearest AIDS centre and gets registered there to receive therapy for money, because he himself is interested in it, because then he will have a normal life, work and finances to support himself.

– It is scary to think about the level of stigma faced by migrants with HIV. Where does this rejection of HIV-positive people, migrants and Russians come from? From ignorance?

– Now there is a lot of information, organizations, websites, information space has expanded. People can find and read everything themselves. But who is interested in it? The target group, people who have already become HIV carriers,” says Alexander.

– Stigma is associated primarily with a complete lack of awareness about this or that disease,” says Mikhail. – I have a number of acquaintances who still think that HIV can be contracted by drinking from the same cup. Speedophobia, or HIV-phobia, comes primarily from ignorance. Sexual transmission of HIV is now the predominant mode of transmission. HIV has long gone beyond the so-called key populations: injecting drug users, MSM (men who have sex with men), sex workers and sex workers. It has long entered the heterosexual field, socially adapted, with wives, husbands, families. At some point, people get tested because they feel bad: “Oh, we have HIV. Unexpectedly. There was a case when a young man – married, two children – went to hospital. He was brought by ambulance but he could not walk: he had terminal AIDS. Thanks to our Botkin doctors, who sometimes help out patients even in a very serious condition.

– But that is if there are no concomitant diseases,” adds Alexander. – But if a person has tuberculosis … At first, tuberculosis should be staved off, but as long as tuberculosis is being treated, there is no one left to treat HIV.

– Are there still a lot of HIV-dissidents?

Both my interlocutors nod. They say that a year ago, Russia started shutting down AIDS dissident websites that were writing about HIV being allegedly a conspiracy of pharmaceutical companies, and a number of NGOs addressed the State Duma with a proposal to introduce criminal punishment for AIDS dissidence. But fake information about HIV is still plentiful and it still leads to tragedies.

– The last high-profile case was in Krasnoyarsk in early summer,” says Alexander. – A little girl died there. The child was taken away from her mother, who was HIV-positive, and given to her grandmother, who also turned out to be a dissident. HIV infection has existed for so many years, there are already medical achievements, therapy, people live with it. The government gives you pills for free! Your task is just to take them at a certain time. That’s all. And live your life as you live it. Okay, if you had money taken out of your pocket you could say that it’s a conspiracy of pharmaceutical companies, but here the state takes all of it. What kind of conspiracy is that?

Mikhail points out that in St. Petersburg, the percentage of people who are registered and take therapy, thank God, is growing. But there is data that the incidence of the disease is also increasing, including among teenagers.

– So what to do about it?

– If we want to stop the growth of the infection in the general population, we have to forget about what we are told every day – about ‘crosses’, that there is no sex before marriage,” says Alexander. – It’s better to remove VAT from condoms, put condom machines in student dormitories for free distribution, certify female condoms. Elementary! Then the incidence of disease will go down. Let us at least introduce sex education in high schools, when hormones are kicking in. But no, we’re sitting here discussing television: “I got pregnant at 15. Oh, how did that happen?” And, again, our legislation: the age of consent is 16 and you can only talk about sex from the age of 18.

– That doesn’t mean we want to show pornographic films in school. We should at least tell them that they need to use condoms, and it’s not even about pregnancy, it’s about protecting yourself and your partner,” says Mikhail. – Of course, you have to somehow control who and what you say to immature minds. But now everything is so framed, you have to go through so many certifications to get into the same university. We are already silent about the school. And the university also has to make an application, select a specialist, and the specialist has to confirm his or her qualifications. Previously, universities used to invite NPOs in the areas they were interested in, but now this is practically non-existent.

Before the legislative changes, the rectors of universities often approached Positive Dialogue with requests to give lectures, tell them what HIV is and how to protect themselves from infection, and let them distribute condoms to those who wished to do so. Now all this is a thing of the past.

Mikhail says higher education institutions and teenage and youth centres under district administrations still have a prevention plan. But due to the new laws, the topic of sex may have to be circumvented. It is difficult for specialists to imagine how, especially taking into account that now HIV is sexually transmitted in the overwhelming majority of cases.

– Concerning access to preventive measures of HIV infection: the cheapest condoms cost 50 rubles for three pieces, but their quality leaves much to be desired. The simplest classic condom, which will not fit everyone’s size, is already 150 rubles for three pieces,” says Mikhail. – So what’s a student to do? Fortunately, we are able to replenish our stock and periodically hand out condoms with lubricant for free. It’s important that people get used to not getting it all for free, but to using a condom as such. Yes, there is pre-exposure and post-exposure HIV prevention (special pills that can be taken before or after potentially dangerous sexual contact), but there is still nothing better than a condom at this stage against HIV infection. Pre-exposure prophylaxis is very good, very right, but it does not protect against hepatitis, syphilis and other sexually transmitted infections.

Alexander recalls how Positive Dialogue had a joint project with a Swedish aid organisation many years ago. Colleagues told us that when HIV infection first appeared and became widely discussed, the reaction to people who were positive in Sweden was also harsh. For example, a car owned by an HIV-positive person could be sent straight to a landfill. Now, however, the situations are dramatically different in our countries. In Sweden and other European countries, sex education and all types of prevention, condoms are available and their use is encouraged. In Russia, there is an HIV epidemic, but neither sex education nor prevention is available to the extent needed.

– Prevention programmes in our country are underfunded,” says Mikhail. – But the process is necessary and it has to go on. The official statistics of St. Petersburg Committee on health protection says that there are supposedly only 10 thousand MSM in our six million citizens city. The official statistics on the incidence of disease among MSM is also understated.

Although HIV infection has long ceased to be a disease of exclusively key groups, it is still necessary to work with them and they need a special approach. But underreporting complicates the task, admits Mikhail.

Despite the fact that there are quite a few places in St. Petersburg where you can get anonymous rapid HIV testing, and the new office of Positive Dialogue has only recently opened, people already come here every day. The most recent clients include a couple starting life together and a young man who had a “risky situation”. Fortunately, all the tests were negative. But people who have just found out they are HIV-positive often come too.

Mikhail regrets that Positive Dialogue does not currently have the resources to provide fully qualified psychological help. “Psychological enquiries are coming in sporadically, but so far we have to work in peer counselling mode or refer them to partner support organisations.

– Everything comes down to money,” Mikhail explains. – The help of a competent professional psychologist is not cheap. And you need a whole staff here: the topic is not simple, it involves a lot of experience and different life situations. The specialists themselves are susceptible to burnout, there should be interchangeability, so that a person could be told: “Go for a walk for two weeks, so that no one touches you. Take care of the house, the garden, the garden”. There are situations that are more affecting to whom: to the person who asked for help or to the person who helps. Sometimes the stories are very difficult, especially when it is a newly discovered case. There are so many problems, you understand that they can be solved, but it takes time, you have to go through the stages of acceptance, especially the first and second stages, shock, anger, denial…

Positive Dialogue has literally only a handful of private donations, although the button on the website has been running since 2018. Getting the message across to a wider audience about how important it is to help people with HIV, that anyone of us can become a person with HIV, is very difficult. Grants and fundraising for individual projects help keep the organization going. Now, thanks to the EECA Fund for Operational Assistance to Key Populations of the region, we have managed to find and pay for new premises. In addition to assistance, it is necessary to engage in prevention, purchase and distribute condoms, buy test kits, ideally conduct seminars on adherence to healthy lifestyle and support groups for people with HIV with participation of medical consultants. Positive Dialogue once held lectures on HIV and the law even for doctors at a military medical hospital. The need for dialogue with doctors has not disappeared, but it has become much more difficult to organise such communication.

– As long as HIV doesn’t affect you personally, you stay out of it,” says Mikhail. – But if it has already touched you, you come running with goggling eyes: “Dear God, how can you live further? And it’s even better if a person runs here and not to the river embankment.

Over the past six years alone, Positive Dialogue has reached more than 31,500 people with its HIV prevention programmes. How many people it has helped in difficult situations is incalculable.

Positive Dialogue needs support to be able to fully assist all those in need. Any donation you can make will bring closer the time when the organisation will again have a full-time psychologist and perhaps support someone close to you. The organisation needs money for legal advice to help people who have been harassed at work, blackmailed or tried to leave the country. To do prevention work. So that the words “HIV is not a sentence” are not just words. So that the dialogue between different people, with all their advantages and disadvantages, can remain positive. Please support this organization. We all need it.


Слишком экстремальная помощь. Кто и как защищает людей с ВИЧ в Санкт-Петербурге

Стигматизация, отказ в оказании медицинских услуг, увольнение, депортация — вот лишь некоторые проблемы, с которыми могут столкнуться ВИЧ-инфицированные люди в России. Решать эти проблемы уже 25 лет помогают сотрудники общественной организации «Позитивный диалог»

Тихая улочка в центре Петербурга, двор с ярким граффити — портретом девушки с длинными волосами и текстом Lu Blue. Больше пока никаких надписей.

Михаил Ступишин, руководитель «Позитивного диалога», встречает меня у двери. Несколько ступенек вниз, и мы в светлом кабинете. В это помещение «Позитивный диалог» въехал совсем недавно, до этого организация годами располагалась на территории инфекционной Боткинской больницы.

— Первая четверть XXI века заканчивается, а люди до сих пор с ВИЧ-фобными тараканами в голове, — смеется Михаил, наливая кофе и рассказывая о переезде. — В четырех помещениях нам отказали в связи с родом нашей деятельности. На предварительном просмотре мы объясняли, что нацелены сейчас на индивидуальное консультирование, а не на массовые мероприятия, говорили, что поток клиентов у нас есть, но не как в мавзолей, что мы работаем с социально значимым заболеванием — с ВИЧ-инфекцией. Нам отвечали: «Да-да-да, все замечательно». А когда дело дошло до заключения договора, сказали: «Мы посмотрели на сайте, чем вы занимаетесь. Для нас это слишком экстремально».

Я вспоминаю Анну, героиню моего текста «Анна и ее победы», подопечную «Позитивного диалога». Вот уж что экстремально, так это отношение, с которым она и многие другие люди то и дело сталкиваются из-за ВИЧ-положительного статуса. Например, когда собственная мать, опытный медработник, заставляет дочку есть из отдельной посуды, хотя контактно-бытового способа передачи ВИЧ не существует. Или когда человека не хотят брать на работу из-за ВИЧ-статуса, несмотря на то, что благодаря терапии (бесплатной и доступной) у него уже давно неопределяемая вирусная нагрузка — это значит, что он вообще никак не может никого заразить. Анна рассказывала, что в самых отчаянных жизненных ситуациях звонила в «Позитивный диалог» и благодаря разговору с юристом Александром Лозой не раз решала проблемы с работой, а потом и с учебой.

Александр присоединяется к нам с Михаилом, мы пожимаем друг другу руки и начинаем разговор, который длится больше двух часов, но даже этого времени кажется мало. Проблем, с которыми сталкиваются люди с ВИЧ в России, слишком много.

«Позитивный диалог» начался аж 25 лет назад. Основал его юрист, один из первых зарегистрированных ВИЧ-положительных людей в СССР Николай Панченко. Недавно он отметил 70-летний юбилей, а несколько лет назад передал руководство организации Михаилу Ступишину, но в разговоре имя Панченко то и дело звучит — именно он начал просветительскую работу, рассказывая о профилактике и жизни с ВИЧ. Сейчас делать это так же необходимо, как и четверть века тому назад.

— Саша здесь с 2004 года работает, а я в 2015 году пришел, — рассказывает Михаил. — Тогда начали реализовываться два больших профилактических проекта: профилактика ВИЧ среди мужчин, практикующих секс с мужчинами, и профилактика ВИЧ-инфекции среди секс-работниц. Я пришел по рекомендации знакомого. У меня среднее медобразование. Я не врач, а средний медработник. Анатомию хорошо знаю, патофизиологию хорошо знаю или, по крайней мере, знал, понимаю, откуда какие ноги растут.

Вдобавок к медицинскому образованию Михаил окончил университет культуры, а Александр учился в Санкт-Петербургском государственном университете. Медик и юрист, у обоих большой опыт работы с людьми в сложных жизненных ситуациях.

— Юридическая консультация многим нужна, — говорит Александр. — Не у всех есть деньги на платную консультацию, не все хотят рассказывать о своих специфических проблемах, и не все юристы в этом практикуются.

— Наверное, часто обращаются по вопросам, связанным с работой? — спрашиваю я. Но все оказывается не совсем так, как я себе представляла.

По словам Александра, чаще всего боятся быть уволенными медицинские работники, которые должны ежегодно сдавать обязательные анализы, в том числе на ВИЧ. Но за консультациями обращаются и сотрудники полиции, МЧС: вопреки федеральному законодательству, в этих ведомствах вводят полный запрет на работу для ВИЧ-положительных людей — выпускают локальные акты о прохождении медосмотра и признают негодными или ограниченно годными к службе.

— В таких ситуациях можно что-то сделать?

— Ну вот еще в советское время был принят акт о том, что люди с ВИЧ-инфекцией не могут быть командирами воздушных судов, — Александр вздыхает. — Лет пять или семь назад у одного капитана выявили ВИЧ. Он обратился в Генеральную прокуратуру, Генеральная прокуратура пошла в Верховный суд, и Верховный суд признал этот акт незаконным. Но человек должен был раскрыть перед всеми свой статус. Дело не в суде как таковом — в документах фамилия человека может быть скрыта. Но работодатель зачастую давит на сотрудника, может распространять о нем слухи.

Михаил приводит в пример историю своего знакомого, которого буквально «съели» на работе, в самом обычном офисе, узнав о его ВИЧ-статусе. Судиться в таких ситуациях может быть бесполезно: с юридической точки зрения дело беспроигрышное — увольнение незаконное, но жизни на работе не дадут.

В суд против работодателя люди идут редко, и, как правило, это резонансные дела, которые меняют локальные нормативные акты организации.

— У нас записано в законодательстве, что это дискриминация, что работодатель будет оштрафован, есть уголовная ответственность, — говорит Александр. — Но все это стараются сделать по-тихому: ты уволишься по собственному желанию, тебе выплатят какое-то выходное пособие, и ты уйдешь спокойно (что с тобой будет дальше — твои проблемы), а мы будем белые и пушистые. Я всегда говорю, что борьба за свои права чревата: могут создать такие условия, что человек будет просто вынужден уйти. Постоянный стресс ведь тоже плохо влияет на организм.

В прошлом году, по словам Александра, локальный акт о запрете работы людям с ВИЧ пыталась издать Генеральная прокуратура, но поднялся шум, и ведомству пришлось отказаться от этой идеи. А вот у Министерства путей и сообщения, похоже, ввести локальный запрет получилось.

— В общем, если начинаются проблемы на работе из-за ВИЧ-статуса, единственный выход — искать нормального работодателя?

— У нас «нормального работодателя» как такового нет, — качает головой Александр.

— Тут дело не столько в работодателе, — добавляет Михаил, — сколько в твоем непосредственном руководителе или в высшем руководстве, если речь о его позиции.

Он рассказывает о случаях, когда при приеме на работу у людей без их ведома брали тест на ВИЧ. Практика эта, конечно, незаконная:

— Вопрос с информированием о статусе человека вообще стоит очень жестко: никакого разглашения, только по официальному запросу суда или прокуратуры. Только тогда Центр СПИД обязан предоставить информацию, состоит этот человек на учете или не состоит. Если человек понимает, что никому о своем статусе не говорил, а информация у работодателя появилась, значит попутно, при прохождении медкомиссии, кровь взяли на ВИЧ-инфекцию. Но, по идее, дальнейших телодвижений работодатель делать не может, потому что вся эта история незаконна.

— А еще с какими проблемами обращаются?

— Доступ к медицинским услугам, — ни секунды не раздумывая, отвечает Александр. — Бывает, что человеку предстоит плановая операция, он знает, что он ВИЧ-инфицированный, а в медицинском учреждении его пытаются либо отговорить, либо перенаправить еще куда-нибудь, либо просто положить в платное отделение, хотя для него все должно быть бесплатно по ОМС.

— Пытаются либо деньги содрать, либо вообще отказаться от него, потому что ВИЧ-статус, — обходится без эвфемизмов Михаил.

— Напрямую этого никто не говорит, начинается различная медицинская терминология либо «показания у вас какие-то не те, давайте, может, через годик». В медицинских учреждениях мы всегда рекомендуем просить письменный отказ. То, что врач говорит в коридоре, вы потом нигде никому не сможете доказать. Врач понимает, что, написав такой отказ, подставит сам себя и свое медучреждение. И тогда врачи скорее наденут двойные перчатки и все сделают, скрипя зубами, — уверен Александр.

— И сделают по возможности качественно, чтобы больше не приходил, — смеется Михаил.

— При этом к гепатиту С, который опаснее, все гораздо проще относятся, — недоумевает Александр. — Если сказать дантистам, что у вас гепатит С, врачи отнесутся к этому легче, чем если сказать про ВИЧ.

СКАЖЕТЕ ПРО ВИЧ — НАВЕРНЯКА УСЛЫШИТЕ: «НЕ-НЕ-НЕ, У НАС ОБЕДЕННЫЙ ПЕРЕРЫВ, В СЛЕДУЮЩИЙ РАЗ ПРИХОДИТЕ»

В медицинских учреждениях, поясняют Александр с Михаилом, зачастую, если человек говорит о своем положительном ВИЧ-статусе, его отсылают в конец очереди. Такая маленькая дискриминация. В помощи не откажут, но примут последним — чтобы после все продезинфицировать. Это притом, что используются одноразовые инструменты или же после каждого пациента все дезинфицируется.

— Вообще у медработников есть инструкции, по которым они в каждом пациенте обязаны подозревать ВИЧ-инфицированного и больного гепатитом С, надевать перчатки и маски в любой ситуации. Но, когда с финансированием проблемы, и перчатки можно спиртом протереть, и еще что-то не сделать.

— А иногда просто идет поток пациентов, и срабатывает просто человеческий фактор.

— Но, если есть риски заболевания, медработников сразу сажают на ПКП — бесплатную постконтактную профилактику. Это приравнивается к производственной травме, — подводит итог Михаил.

Но и медицинскими вопросами юридические обращения не исчерпываются. Люди с положительным ВИЧ-статусом все чаще сталкиваются с шантажом.

— Шантажирует либо бывший сожитель/сожительница, либо бывший супруг/супруга, — поясняет Александр. — Начинают угрожать, что, например, раскроют статус родственникам.

— А с этим можно бороться?

— Если человек опасается этого, он может пойти и написать заявление в полицию, потому что это вмешательство в частную жизнь. Такие заявления обязаны принять, поскольку у нас есть Уголовный кодекс. По заявлению сначала будет проводиться проверка, вызовут одну сторону, потом — вторую. Может быть, на этой стадии шантажирующий человек уже поймет, что зря это делает. Иногда шантажировать пытаются люди, которые сами уже ВИЧ-инфицированы.

— Может быть, оба уже были инфицированы, когда встретились, и боялись друг другу сказать. Мы все боимся, — говорит Михаил. — Это уже к вопросу о самостигматизации, вызванной стигматизацией со стороны общества. Чем дальше в лес, тем сказать партнеру становится сложнее. Недавно у меня была консультация — мы полтора часа проговорили по телефону (у нас в тот момент не было офиса). Парень «плюсанул» (тест оказался положительным), у него есть постоянный партнер, ВИЧ-отрицательный. Клиент говорит: «Я все знаю, все понимаю, понимаю, что с этим живут, и история с таблетками меня не смущает».

«НО КАК Я ЕМУ СКАЖУ? Я И ТЕРЯТЬ ЕГО НЕ ХОЧУ, И БОЮСЬ СКАЗАТЬ»

Вот эта самостигма появляется благодаря нашей любимой общественности, которая до сих пор считает, что ВИЧ-инфекция — это крах и смерть.

Еще сложнее ситуация, когда ВИЧ-положительный человек — гражданин другого государства. Избежать депортации можно только при наличии близких родственников или супруга/супруги с российским гражданством. Да и поправки про родственников, несколько облегчающие иностранцам жизнь, появились лишь недавно и помогают не всегда.

— По одному случаю пришлось подавать в суд в Москве против Роспотребнадзора, — рассказывает Александр. — Гражданин Украины въехал в Россию. Жена у него россиянка. Суд отменил решение Роспотребнадзора о нежелательности пребывания на территории РФ. Недавно звонила супруга того человека, сказала, что ему нужно продлевать или получать новый вид на жительство, а полиция ему на основании ВИЧ-статуса отказывает. Требуют справку от Центра СПИД о том, что он состоит там на учете, а в Центре СПИД говорят: «Мы не возьмем его на учет, потому что он иностранный гражданин». Все равно возникают юридические препоны.

— А если нет близких родственников — граждан РФ?

— Иностранец подлежит депортации. На территории СНГ только два государства все еще депортируют граждан с ВИЧ: Россия и Армения. Остальные признали, что это неопасно, да и иностранец сам, зная о том, что у него ВИЧ, бежит в ближайший Центр СПИД и встает там на учет, чтобы получать терапию за деньги, потому что он сам в этом заинтересован, потому что тогда у него будет нормальная жизнь, работа и финансы, чтобы себя содержать.

— О том, с каким уровнем стигматизации могут сталкиваться мигранты с ВИЧ, даже думать страшно. Откуда вообще такое неприятие ВИЧ-положительных людей, мигрантов и россиян? От невежества?

— Сейчас очень много информации, организаций, сайтов, информационное пространство очень расширилось. Люди сами могут все найти и прочитать. Но кто этим интересуется? Целевая группа, люди, которые уже стали носителями ВИЧ, — рассуждает Александр.

— Стигматизация связана в первую очередь с кромешной неосведомленностью о том или ином заболевании, — уверен Михаил. — У меня есть ряд знакомых, которые до сих пор думают, что ВИЧ-инфекцией можно заразиться, испив из одной чашки. Спидофобия, или ВИЧ-фобия, идет в первую очередь от неосведомленности. Сейчас половой способ передачи ВИЧ преобладает. ВИЧ-инфекция уже давным-давно вышла за пределы так называемых ключевых групп: потребителей инъекционных наркотиков, МСМ (мужчин, практикующих секс с мужчинами. — Прим. ТД), секс-работников и секс-работниц. Она уже давно вышла в гетеросексуальное поле, социально адаптированное, с женами, мужьями, семьями. В какой-то момент люди сдают анализы, потому что им плохо: «Ой, у нас ВИЧ-инфекция». Неожиданно. Был случай, когда в больницу попал молодой мужчина — женат, двое детей. Его привезли на скорой, он не мог ходить — СПИД, терминальная стадия. Спасибо нашим боткинским врачам, которые иногда вытягивают пациентов даже в очень тяжелом состоянии.

— Но это если нет сопутствующих заболеваний, — дополняет Александр. — А если у человека туберкулез… Сначала надо «забить» туберкулез, но, пока лечат туберкулез, уже и лечить от ВИЧ становится некого.

— А ВИЧ-диссидентов по-прежнему много?

Оба моих собеседника кивают. Говорят, что год назад в России стали закрывать сайты СПИД-диссидентов, писавших о том, что ВИЧ — это якобы заговор фармкомпаний, а ряд общественных организаций обратились в Госдуму с предложением ввести уголовное наказание за СПИД-диссидентство. Но фейковой информации о ВИЧ по-прежнему много, и это по-прежнему приводит к трагедиям.

— Последний резонансный случай был в Красноярске в начале лета, — говорит Александр. — Там умерла маленькая девочка. У мамы, ВИЧ-диссидентки, отняли ребенка, передали бабушке, а та тоже оказалась диссиденткой. ВИЧ-инфекция существует уже столько лет, уже есть достижения медицинские, терапия, люди с ней живут. Вам государство бесплатно дает таблетки! Ваша задача — просто их принять в определенное время. Всё. И живите как живете. Ладно если бы у тебя из кармана вынимали деньги, ты мог бы сказать, что это заговор фармкомпаний, но здесь-то государство все берет на себя. Какой тут заговор?

Михаил отмечает, что в Петербурге процент людей, состоящих на учете и принимающих терапию, слава богу, растет. Но есть данные, что и заболеваемость тоже растет, в том числе в подростковой среде.

— И что с этим делать?

— Если мы хотим остановить рост инфекции в общей популяции, мы должны забыть о том, о чем нам каждый день говорят, — о «скрепах», о том, что нет никакого секса до брака, — говорит Александр. — Лучше уберите НДС с презервативов, поставьте в студенческих общежитиях кондоматы для бесплатной их раздачи, сертифицируйте женские презервативы. Элементарно! Тогда пойдет снижение заболеваемости. Давайте хотя бы в старших классах вводить сексуальное просвещение, когда гормоны вовсю идут. Но нет, сидим, обсуждаем телевизор: «Забеременела в 15 лет. Ах, как же это случилось?» И, опять-таки, наше законодательство: возраст согласия — с 16 лет, а разговаривать о сексе можно только с 18 лет.

— Это не значит, что мы хотим показывать в школе порнографические фильмы. Надо рассказывать хотя бы, что нужно использовать презервативы, и дело даже не в беременности, а в том, что нужно обезопасить себя и своего партнера, — говорит Михаил. — Конечно, каким-то образом нужно контролировать, кто и что будет глаголать неокрепшим умам. Но теперь все поставлено в такие рамки, нужно пройти столько сертификаций, чтобы прийти в тот же вуз. Про школу мы уже вообще молчим. И вуз тоже должен сделать заявку, подобрать специалиста, а специалист должен подтвердить свою квалификацию. Раньше вузы приглашали НКО по тем направлениям, которые их интересуют, теперь этого практически не происходит.

До законодательных новшеств в «Позитивный диалог» нередко обращались ректораты вузов: просили провести лекции, рассказать о том, что такое ВИЧ, как предохраняться от инфекции, позволяли раздавать презервативы желающим. Сейчас все это осталось в прошлом.

Михаил говорит, что у вузов и подростково-молодежных центров при районных администрациях по-прежнему есть план профилактических мероприятий. Но в связи с новыми законами тему секса, видимо, придется обходить. Как — представить специалистам сложно, особенно учитывая, что сейчас ВИЧ в подавляющем большинстве случаев передается именно половым путем.

— К вопросу о доступе к профилактическим мерам по ВИЧ-инфекции: у нас самые дешевые презервативы стоят 50 рублей за три штуки, но качество у них оставляет желать лучшего. Простейший классический презерватив, который не всем подойдет по размеру, — уже 150 рублей за три штуки, — говорит Михаил. — И что делать тому же самому студенту? У нас, к счастью, есть возможность пополнять запас и периодически раздавать презервативы с лубрикантами бесплатно. Важно, чтобы люди привыкли не к тому, чтобы получать это все бесплатно, а к использованию презерватива как такового. Да, есть доконтактная и постконтактная профилактика ВИЧ (специальные таблетки, которые можно принять до или после потенциально опасного сексуального контакта), но все равно лучше презерватива на данном этапе против ВИЧ-инфекции ничего не придумали. Доконтактная профилактика — это очень хорошо, очень правильно, но от гепатитов, сифилиса и других инфекций, передающихся половым путем, она не защищает.

Александр вспоминает, как много лет назад у «Позитивного диалога» был совместный проект со шведской помогающей организацией. Коллеги рассказывали, что, когда ВИЧ-инфекция только появилась и стала широко обсуждаться, реакция на людей с положительным статусом в Швеции тоже была жесткой. Например, автомобиль, который принадлежал ВИЧ-положительному человеку, могли отправить прямиком на свалку. Зато сейчас ситуации в наших странах различаются кардинально. В Швеции, да и в других европейских странах, доступны секс-просвещение и все виды профилактики, презервативы, их использование поощряется. В России эпидемия ВИЧ — при этом нет ни секс-просвещения, ни профилактики в нужном объеме.

— У нас программы профилактики мало финансируются, — говорит Михаил. — А процесс нужен, он должен идти. Вот официальная статистика нашего петербургского комитета по здравоохранению: на наш шестимиллионный город якобы всего 10 тысяч МСМ. Официальная статистика по заболеваемости среди МСМ тоже занижена.

Хотя ВИЧ-инфекция уже давно перестала быть болезнью исключительно ключевых групп, работать с ними по-прежнему нужно, им необходим особый подход. Но заниженная статистика серьезно усложняет задачу, признается Михаил.

Несмотря на то что в Петербурге немало мест, где можно анонимно пройти экспресс-тестирование на ВИЧ, и новый офис «Позитивного диалога» работает совсем недавно, сюда уже приходят каждый день. Из последних клиентов — пара, начинающая совместную жизнь, и молодой человек, у которого произошла «рискованная ситуация». К счастью, все тесты оказались отрицательными. Но часто обращаются и люди, только что узнавшие о положительном ВИЧ-статусе.

Михаил сожалеет, что сейчас у «Позитивного диалога» нет ресурсов для того, чтобы оказывать полноценную квалифицированную психологическую помощь. «Психологические» обращения идут через раз, но пока работать приходится в режиме равного консультирования или перенаправлять в партнерские помогающие организации.

— Все упирается в деньги, — поясняет Михаил. — Помощь грамотного профессионального психолога стоит недешево. Да и здесь нужен целый штат: тема непростая, связана с большими переживаниями, разными жизненными ситуациями. Сами специалисты подвержены выгоранию, здесь должна быть взаимозаменяемость, чтобы человеку можно было сказать: «Иди погуляй недели две, чтобы тебя никто не трогал. Занимайся домом, садом, огородом». Бывают ситуации, которые даже непонятно на кого сильнее действуют: на человека, который обратился за помощью, или на человека, который помогает. Иногда истории очень сложные, особенно когда это вновь выявленный случай. На тебя вываливается столько проблем, понимаешь, что их можно решить, но нужно время, нужно пройти стадии принятия, особенно первую и вторую, шок, гнев, отрицание…

Частных пожертвований у «Позитивного диалога» буквально единицы, хотя кнопка на сайте работает с 2018 года. Донести до широкой аудитории мысль о том, как важно помогать людям с ВИЧ, о том, что человеком с ВИЧ может стать любой из нас, очень сложно. Держаться организации помогают гранты, привлечение финансов на отдельные проекты. Вот сейчас найти и оплатить новое помещение получилось благодаря Фонду оперативной помощи ключевым группам населения региона ВЕЦА. А, помимо помощи, нужно заниматься и профилактикой, закупать и распространять презервативы, закупать тест-системы, в идеале еще проводить семинары по приверженности здоровому образу жизни, группы поддержки для людей с ВИЧ с участием медицинских консультантов. Когда-то «Позитивный диалог» проводил лекции по теме «ВИЧ и право» даже для врачей военно-медицинского госпиталя. Потребность в диалоге с врачами никуда не делась, только организовать такое общение стало гораздо сложнее.

— Пока ВИЧ не касается тебя лично, ты в это дело не лезешь, — говорит Михаил. — А если уже коснулось, то прибегаешь с выпученными глазами: «Боже-боже, как жить дальше?» И это еще хорошо, если человек сюда прибегает, а не на набережную реки.

Только за последние шесть лет работы «Позитивный диалог» охватил своими программами профилактики ВИЧ более 31,5 тысячи человек. Скольким людям он помог в трудной ситуации, подсчету не поддается.

Чтобы полноценно оказывать помощь всем, кто в ней нуждается, «Позитивному диалогу» нужна поддержка. Любое посильное пожертвование приблизит то время, когда в организации снова появится штатный психолог и, возможно, поддержит близкого вам человека. Организации нужны деньги на юридические консультации, чтобы помогать людям, которых притесняют на работе, шантажируют или пытаются выслать из страны. Чтобы вести профилактическую работу. Чтобы слова «ВИЧ — не приговор» были не просто словами. Чтобы диалог между самыми разными людьми со всеми их плюсами и минусами оставался все-таки позитивным. Пожалуйста, поддержите эту организацию. Она нужна нам всем.

Learn how to challenge HIV criminalisation in Africa

Activists and advocates in East and Southern Africa are encouraged to register and participate in a free moderated online course on HIV criminalisation.

If you work with civil society organisations based in Angola, Botswana, Comoros, Democratic Republic of Congo, Eswatini, Lesotho, Kenya, Madagascar, Malawi, Mauritius, Mozambique, Namibia, Seychelles, South Africa, Tanzania, Uganda, Zambia, and Zimbabwe, then this course is for you.

Organised by HIV JUSTICE WORLDWIDE partner, the AIDS and Rights Alliance for Southern Africa (ARASA), the aim of the online course is to increase awareness of the harmful impacts of policies that criminalise people living with HIV and learn how to strengthen advocacy in this area.

The course will start on 13 September 2021 and end on 8 October 2021.

You can apply for the course here.

All applications must be received by no later than the close of business on 30 August 2021.

Successful applicants will be notified by 2 September 2021.

For any questions, please write to Bruce Tushabe at bruce[at]arasa[dot]info and copy communications[at]arasa[dot]info.

To learn more about HIV JUSTICE WORLDWIDE, the global movement to end HIV criminalisation, please visit https://www.hivjusticeworldwide.org/en/

Russia: Law prohibiting migrants living with HIV from staying in the country does not just legalise discrimination, it also endangers their lives

“You have HIV, you have to leave”

Automated Google translation – For original article in Russian, please scroll down

Russia still has a law prohibiting HIV-infected migrants from staying in the country. This norm does not just legalise discrimination – it puts people in mortal danger who could receive treatment and live a normal life.

In the SIZO “Kresty” a “feeding trough” was opened – a hole through which food is passed to the arrested. A woman looked through the window and shouted: “Ramis – who?”

Ramis went to the “trough”.

– Congratulations, you have HIV. Come on, sign. If you infect someone, imprisonment for up to three years.

The woman left, the trough closed. Ramis turned and looked at the inmates:

– What was it?

Ramis came to St. Petersburg from Kyrgyzstan, worked as a driver. Ten years ago, he came home from work late at night, fell asleep at the wheel and got into a traffic accident. Ramis could not compensate for the damage for the wrecked car.

“The company has disclaimed responsibility: I had to work eight hours, but it turned out thirteen,” Ramis says. – I was delayed because the car needed to be repaired. I could have left it [at the car service], but there was a product inside it, [so] I waited for the repair, took the product, and on the way back it happened.

Ramis spent five months in a pre-trial detention center, he was sentenced to two years in a penal colony. At home, the man has a wife and son.

All this time, Ramis did not receive antiretroviral (ARV) therapy, despite his positive HIV status. Migrants in Russia do not have the right to this treatment, and even more so in prisons there is no access to the necessary medicines. The man did not know anything about the disease, his cellmates had already told him something about the virus.

Ramis was released in 2013. Of the documents, he only had a certificate of release. He was stopped immediately on the way from the colony to St. Petersburg, detained and sent to the center for those who are awaiting deportation.

Ramis spent another six months there, during which he became ill and developed tuberculosis of the lymph nodes. The man was taken to the hospital and again confirmed to be HIV positive. After that, the deportation process accelerated: there was another trial, and the employees of the migration service took Ramis to the airport.

Ramis recalls that before the deportation he was directly told:

– As we enter the airport, you take off your mask, do not talk about the temperature or tuberculosis, otherwise you will be returned again, they will not be allowed on the plane.

– The doctor told me to return to my homeland, I had to start taking ARV therapy, otherwise I would not have cured tuberculosis. I had to take off my mask and say that everything is fine with me, ”Ramis says. – As soon as they took off, I got dizzy. This five-hour flight seemed like an eternity to me. Honestly, I thought I was going to die.

Come and get infected here

In Russia, there is a law according to which migrants with HIV are denied treatment and deported to their homeland. The norm appeared in the country in 1995 as a fight against the spread of the virus. Initially, the law was passed in an environment when HIV was not yet a widespread disease.

The authorities believed that the epidemic in Russia could be prevented by limiting the flow of people with HIV, says Daniil Kashnitsky, junior researcher at the Institute for Social Policy at the Higher School of Economics. But by the end of the nineties, HIV still spread throughout Russia, including through injecting drug use, because people shared syringes.

Daniel emphasizes that now in the countries from which migrants most often come to Russia – Uzbekistan, Tajikistan, Ukraine, Kyrgyzstan and Moldova – the level of HIV prevalence is lower than in Russia.

– In Ukraine, it is slightly lower, and in other countries – significantly, four to five times. Today we are not talking about the fact that someone comes to Russia en masse with HIV, but rather the opposite: they come and get infected with HIV here, ” says Kashnitsky. – This is evidenced by the data of epidemiological surveillance among migrants who returned to Uzbekistan and Tajikistan. Again, this is not due to the fact that they have come to a country with a high prevalence of the disease, but because they have an increased risk of life.

Daniel considers a break with his family, a lack of help and older relatives to watch over those who left, as an increased risk of his life. As a result, migrants have more freedom to engage in sexual relations and may start using drugs.

“I lived without a wife for three years,” Ramis says. – Conducted, as they say, promiscuous sex. I got HIV through the bed.

You must pay back your debts first

When obtaining or renewing a patent, as well as a residence permit in Russia, people need to take an HIV test. The procedure usually takes place at migration centers. There is a large flow of people there, and if someone finds a virus, as a rule, no one advises him or explains anything. They just say, “You have HIV, you have to leave.”

“This news hits a man on the head like a sack,” says Kashnitsky. – In rural areas of Tajikistan, for example, the average salary is $ 100, which is enough only for food. To come to Russia and pay for a patent, people borrow money from relatives, friends, and banks. First, you have to repay these debts, and then only start working as a plus for yourself.

Migrants who came to Russia to work do not want to deceive the expectations of their relatives. In addition, HIV is a stigma, so migrants are the last to want to talk about the disease to their loved ones. Therefore, they hide their status and start working illegally, especially in Russia there is still the possibility of working in the gray zone.

Thus, the prohibition of migrants with HIV to stay in Russia has many negative consequences. A person who has been diagnosed with a virus is literally pushed into the illegal sphere. Not only does he not receive the necessary treatment, – being left without a patent and a residence permit, the migrant is not protected by the law in any way, at any moment he risks losing his job and salary, becomes especially vulnerable to the police: if he is stopped on the street, he will have to give a bribe.

Ilgiz decided to work in the gray zone. In 2019, he came to Moscow from Uzbekistan to work in his specialty. But it didn’t work out. Through a mobile application, Ilgiz met a young man who offered him to “work as an escort.”

– After he told me this, we had a fight, it even came to a fight. But I had to send home a serious amount, and it was impossible to achieve this with my earnings in Moscow.

Ilgiz went home and, as he says, “thought hard.” The apartment in which his parents lived was put up for auction for debts on utility bills. They were given sixty days to pay the fines.

The young man returned to Moscow and agreed to work.

– I deceived myself, reassured myself that it was temporary, that I would think of something and return back to normal life. But I went into this more and more. I started dating serious, big people. They asked for proof that I was healthy – every three months I was checked. And something suddenly told me that something was wrong with me.

The very bottom

At the state medical center, Ilgiz’s fears were confirmed. The doctor told him that he had a huge viral load and had HIV.

– I decided: I must kill myself. He worked out various options: jump off the floor, hang himself, get poisoned, throw himself under the car. But I realized that dead will bring more problems to my family than alive. It is very difficult to take a corpse from Russia home.

The young man was not provided with psychological support at the medical center, but the specialist immediately began to insist that Ilgiz provide his passport data, convincing him that he would not transfer them anywhere.

“I knew that as soon as I provided them, I would be deported. I was not afraid of being deported to my homeland, but the very reason – because of HIV – scared me. I didn’t want anyone to know about this, ”Ilgiz says. – I value my parents very much, I am afraid to shock them with such news – they may even abandon me. I have not received anything in this life, the most precious thing in it is my mom and dad, I cannot lose them.

Ilgiz did not disclose his personal data, did not tell his relatives about the disease and stayed to work in Russia. But he decided to lead a different way of life and tries not to return to the past.

In addition to difficulties with work, foreigners with HIV cannot receive education in Russia, even for a fee. Four years ago, Amir came from Uzbekistan to study dentistry in Tver. He was in his last year of college when he found out that he was ill.

Like Ilgiz, no one consulted Amir about the disease. Instead, doctors began to insist that he should be registered – as if then he would be able to receive therapy free of charge, like other foreigners.

– Of course, it was a hoax, – Amir is indignant. – Only after they took my data, they told me about the deportation. The state then was … the very bottom. What deportation? I cannot quit my studies, I have already studied to be a dentist for seven years. Plus, I belong to the MSM community (men who have sex with men. The term is adopted in organizations helping people with HIV. – Approx. TD ). Coming back would have ended very badly.

Amir learned of his status in January 2020. He still hasn’t told anyone about it. The young man just wanted to tell the guy about it, who most likely infected him. But they did not see each other for a year, and Amir could not find him and talk to him.

– In my homeland, everyone thinks that only sinners are sick with HIV. I myself was brought up with such convictions. They do not know that there is therapy, that those who are being treated are not contagious, everyone thinks that if you have HIV, you are doomed. But now I have been living for a year, and everything is in order.

It just needs to be done, and that’s it.

Migrants with HIV who remain illegally in Russia do not have access to routine healthcare. They can only rely on emergency medical assistance.

Due to the fact that migrants cannot take ARV therapy, their immunity decreases, the viral load grows, and complications begin. By the time they get to the hospital, they already need long-term treatment, which the Russian state is obliged to provide them.

But even access to emergency medicine can be difficult. In anticipation of deportation, Ramis spent several months in the temporary detention center for foreign citizens, for a long time he kept a temperature of forty degrees. He started treating tuberculosis only in Kyrgyzstan.

– I was in the hospital for four months. It was very bad without money. I was operated there: without anesthesia – “without shit” – they cut me.

Unfavorable discrimination

The Regional Expert Group on the Health of Migrants in the EECA region calculated that hospitalization and inpatient treatment of migrants with HIV costs Russia more than providing them with ARV therapy. Thus, the country spends more than 220 thousand rubles per person with an advanced HIV case in a hospital, and a course of an annual ARV therapy would cost about 85 thousand.

If Russia legalizes people with HIV, they will be able to return to their homeland, register with an AIDS center, receive treatment and continue working in Russia.

“We don’t even require today to set a budget for the treatment of migrants with HIV – it’s enough just to remove the rule on expulsion,” says Daniil Kashnitsky. – For some reason, doctors and officials believe that the abolition of deportation will necessarily lead to an increase in costs, but this is not so. Absolutely no one will suffer from this, and there will be many advantages. It just needs to be done, and that’s it.

Many countries abolished similar deportation rules 10-15 years ago. According to Daniil Kashnitsky, HIV is a pandemic and the closure of borders does not help the fight against the spread of the virus. The European Court of Human Rights demanded from Russia a complete refusal to discriminate against HIV-positive foreigners back in 2016, but during this time the legislation has not changed in any way.

In April, State Duma deputy Fedot Tumusov submitted to the Russian government a bill proposing to abolish the mandatory deportation of migrants with HIV if they receive ARV therapy. Denis Kamaldinov, chairman of the board of the non-profit organization Humanitarian Project, is confident that the initiative will improve the situation with the disease.

– The person who is on therapy will not transmit the virus to others. This will partly solve the problem of prevention, says Kamaldinov. – If labor migrants are in the country legally, then the country needs them. This means that it is important to verify all the mechanisms for legalizing these people, regardless of their HIV status.

According to Kamaldinov, if the countries where migrants come from agree to provide them with therapy, then it will be necessary to decide who will control the treatment. He believes that adherence to therapy should be monitored in the health care system, and not in the migration service.

– It is important to calculate the capacity of the health care system to monitor and accompany migrants, or to work out the mechanisms that are associated with the fact that a person provides analyzes for local health care.

Tumusov hoped that the initiative would be successful:

– At least if you look at things objectively.

But in mid-July, the government received a negative response to the bill. The response (available to the editorial office) specifies that there are no legal grounds for providing migrants with therapy at the expense of foreign states. Bans on the entry and residence of foreign citizens and stateless persons with HIV, according to the document, were established “in order to prevent the spread of HIV infection in the territory of the Russian Federation”. The only exceptions are people who have family members, children or parents who have citizenship or permanently reside in the territory of the Russian Federation.

Never ask for help

Traditionally, it is believed that HIV is spread only in certain groups: among homosexuals, injecting drug users. Their risk of infection is indeed higher, but, according to official data, the main route of transmission of the virus in Russia is through sex with heterosexual partners. Because of prejudice about the spread of the virus, people with HIV do not get tested, are unaware of their status, infect partners and exacerbate the pandemic. In 2019, 1,068,839 people were registered in Russia living with HIV.

According to Kashnitsky, there is no data that would indicate that HIV prevalence trends among migrants differ. Throughout the EECA region, the proportion of sexual transmission is increasing and the proportion of HIV transmission through injecting drug use is decreasing.

To combat the epidemic, every HIV-positive person must have access to ARV therapy. On average, over three months of treatment, the viral load decreases so much that a person cannot infect other people, even his sexual partner, with unprotected sex.

According to the research platform “To be precise,” only 44% of people living with HIV were receiving antiretroviral therapy in Russia in 2019. This is due to underfunding of AIDS centers, outdated treatment protocols, as well as stigma around the disease – people are afraid to seek help. Someone is worried that acquaintances will find out that difficulties may arise at work; migrants also fear expulsion from the country.

“Migrants with HIV will never seek help,” Ramis says. – They know: they will be deported for life.

Visitors with HIV not only do not go to doctors, but also do not undergo official testing for the presence of the disease due to fear of expulsion. Therefore, there is no complete epidemiological picture of the number of HIV-positive migrants. According to official data, in 2019, 97 thousand Russians and only 2 thousand newcomers were diagnosed with HIV.

“Official testing data is the tip of the iceberg,” says Daniel. – We have no way of believing that HIV-positive migrants pose any risk for Russians.

***

All the heroes of this article have achieved zero viral load. Ilgiz, with the help of the foundation, contacted the doctor, who wrote out a treatment plan for him, and he himself buys the medicines at the pharmacy. Amir is receiving therapy at a non-profit organization. Both remain in Russia for the time being illegally. Ramis has been receiving medicines at the AIDS Center in Kyrgyzstan for six years.

“Deportation is wrong,” Ilgiz believes. – Every person is wrong – you do not know what will happen tomorrow. So I didn’t know. I was sure, not one hundred, but a thousand percent that this would not happen to me, I protected myself, took pre-exposure and post-exposure therapy, passed tests. But I got sick anyway. But the main thing is that I know about my status and I am undergoing treatment.

Ramis did not see his wife and son for two years after returning to his homeland – he communicated with them only by phone. He believed that with so many problems and HIV-positive status, he could no longer have a family. Then Ramis started working in an organization that helps people with HIV and tuberculosis.

– Doctors from the center asked me why I didn’t invite my wife and son to my place. I laughed: “Why are you driving? I have so many problems. ” And then I decided to call them. For another two years, under various pretexts, I had sex with my wife with a condom. But then I realized that with therapy I could have a healthy child and not infect my wife. Our daughter is eight months old.


«У вас ВИЧ, вы должны уехать»

В России до сих пор действует закон, запрещающий находиться на территории страны мигрантам с ВИЧ-инфекцией. Эта норма не просто легализует дискриминацию — она подвергает смертельной опасности людей, которые могли бы получать лечение и жить самой обычной жизнью

В СИЗО «Кресты» открылась «кормушка» — отверстие, через которое арестованным передают еду. В окошко заглянула женщина и крикнула: «Рамис — кто?»

Рамис подошел к «кормушке».

— Поздравляю, у вас ВИЧ. Давайте, расписывайтесь. Если кого-то заразите, лишение свободы до трех лет.

Женщина ушла, кормушка закрылась. Рамис повернулся, посмотрел на сокамерников:

— Че это было-то?

Рамис приехал в Санкт-Петербург из Кыргызстана, работал водителем. Десять лет назад он поздно ночью возвращался с работы, уснул за рулем и попал в дорожно-транспортное происшествие. Возместить ущерб за разбитую машину Рамис не смог.

— Компания сняла с себя ответственность: я должен был работать восемь часов, а вышло тринадцать, — говорит Рамис. — Я задержался из-за того, что машину нужно было ремонтировать. Я мог бы ее оставить [в автосервисе], но внутри нее был товар, [поэтому] я дождался ремонта, отвез товар, и по пути назад это случилось.

Пять месяцев Рамис провел в СИЗО, его приговорили к двум годам колонии-поселения. На родине у мужчины остались жена и сын.

Все это время Рамис не получал антиретровирусную (АРВ) терапию, несмотря на положительный ВИЧ-статус. У мигрантов в России нет права на это лечение, а в тюрьмах тем более нет доступа к необходимым медикаментам. О заболевании мужчина ничего не знал, что-то о вирусе рассказали ему уже сокамерники.

Рамис вышел на свободу в 2013 году. Из документов у него была только справка об освобождении. Его остановили сразу по пути из колонии в Санкт-Петербург, задержали и отправили в центр для тех, кого ждет депортация.

Там Рамис провел еще шесть месяцев, во время которых ему стало плохо, развился туберкулез лимфатических узлов. Мужчину отвезли в больницу и снова подтвердили, что у него ВИЧ. После этого процесс депортации ускорился: прошел еще один суд, и сотрудники миграционной службы доставили Рамиса в аэропорт.

Рамис вспоминает, что перед депортацией ему прямо сказали:

— Как в аэропорт зайдем, ты сними маску, не говори про температуру или туберкулез, а то тебя опять вернут, в самолет не пустят.

— Мне врач велела вернуться на родину, нужно было начать принимать АРВ-терапию, иначе я не вылечил бы туберкулез. Пришлось мне маску снять и сказать, что у меня все хорошо, — говорит Рамис. — Как только взлетели, у меня головокружение началось. Этот пятичасовой перелет мне показался вечностью. Честно скажу, я думал, что сдохну.

Приезжают и здесь заражаются

В России действует закон, по которому мигрантам с ВИЧ отказывают в лечении и депортируют их на родину. Норма появилась в стране в 1995 году в качестве борьбы с распространением вируса. Изначально закон принимали в условиях, когда ВИЧ еще не был повсеместным заболеванием.

Власти считали, что эпидемию в России можно предотвратить, если ограничить поток людей с ВИЧ, рассказывает младший научный сотрудник Института социальной политики НИУ ВШЭ Даниил Кашницкий. Но уже к концу девяностых ВИЧ все равно распространился по всей России, в том числе из-за употребления инъекционных наркотиков, потому что люди пользовались общими шприцами.

Даниил подчеркивает, что сейчас в странах, откуда чаще всего приезжают мигранты в Россию, — Узбекистане, Таджикистане, Украине, Кыргызстане и Молдове — уровень распространения ВИЧ ниже, чем в России.

— На Украине немного ниже, а в остальных странах — значительно, в четыре-пять раз. Сегодня речь не идет о том, что кто-то в Россию приезжает массово с ВИЧ, а, скорее, наоборот: они приезжают и здесь заражаются ВИЧ-инфекцией, — говорит Кашницкий. — Об этом свидетельствуют данные эпидемиологического надзора среди мигрантов, вернувшихся в Узбекистан и Таджикистан. И опять же это происходит не из-за того, что они приехали в страну с высокой распространенностью заболевания, а потому, что у них повышенный риск жизни.

К повышенному риску жизни Даниил относит разрыв с семьей, отсутствие помощи и старших родственников, которые бы следили за уехавшими. В результате мигранты свободнее вступают в сексуальные отношения, могут начать употреблять наркотики.

— Я без жены три года жил, — рассказывает Рамис. — Вел, как это говорится, беспорядочные половые связи. Через постель у меня появился ВИЧ.

Сначала ты должен вернуть долги

При получении или продлении патента, а также вида на жительство в России людям необходимо сдать тест на ВИЧ. Процедура обычно проходит в миграционных центрах. Там большой поток людей, и если у кого-то находят вирус, его, как правило, никто не консультирует и ничего не объясняет. Просто говорят: «У вас ВИЧ, вы должны уехать».

— Эта новость как мешком ударяет человека по голове, — говорит Кашницкий. — В сельской местности Таджикистана, например, средняя зарплата — 100 долларов, ее хватает только на еду. Люди, чтобы приехать в Россию и оплатить патент, одалживают деньги у родных, друзей, в банках. Сначала ты должен вернуть эти долги, а потом уже только начать работать в плюс для себя.

Мигранты, приехавшие в Россию на заработки, не хотят обманывать ожидания родных. Кроме того, ВИЧ — это стигма, поэтому мигранты в последнюю очередь хотят рассказывать о заболевании своим близким. Поэтому они скрывают свой статус и начинают работать нелегально, тем более в России до сих пор сохраняется возможность работы в серой зоне.

Таким образом, запрет мигрантам с ВИЧ находиться в России имеет множество негативных последствий. Человека, у которого выявили вирус, буквально выталкивают в нелегальную сферу. Он не только не получает необходимого лечения, — оставаясь без патента и вида на жительство, мигрант никак не защищен законом, в любой момент рискует лишиться работы и зарплаты, становится особенно уязвимым перед полицией: если остановят на улице, придется давать взятку.

Работать в серой зоне решил Ильгиз. Он в 2019 году приехал в Москву из Узбекистана работать по специальности. Но не вышло. Через мобильное приложение Ильгиз познакомился с молодым человеком, который предложил ему «работать эскортом».

— После того как он это мне сказал, мы с ним поругались, дошло даже до драки. Но мне нужно было отправить домой серьезную сумму, а моими заработками в Москве этого добиться было невозможно.

Ильгиз уехал домой и, как он говорит, «подумал хорошенько». Квартиру, в которой жили его родители, выставили на аукцион за долги по коммунальным счетам. Им дали шестьдесят дней, чтобы оплатить штрафы.

Молодой человек вернулся в Москву и согласился на работу.

— Я обманывал себя, успокаивал, что это временно, что я что-то придумаю и вернусь обратно к нормальной жизни. Но я уходил в это все сильнее. Я начал встречаться с серьезными, большими людьми. Они просили доказательства, что я здоров, — каждые три месяца я проверялся. И что-то мне вдруг подсказало, что со мной что-то не так.

Самое дно

В государственном медицинском центре опасения Ильгиза подтвердились. Врач сказал ему, что у него огромная вирусная нагрузка и он болен ВИЧ.

— Я решил: надо убить себя. Прорабатывал разные варианты: спрыгнуть с этажа, повеситься, отравиться, броситься под машину. Но я понял, что мертвый принесу своей семье больше проблем, чем живой. Вывезти труп из России на родину очень сложно.

Психологической поддержки в медцентре молодому человеку не оказали, но специалист сразу начал настаивать на том, чтобы Ильгиз предоставил свои паспортные данные, убеждая, что никуда не будет их передавать.

— Я знал, что, как только предоставлю их, меня депортируют. Я не боялся выдворения на родину, но сам повод — из-за ВИЧ — меня пугал. Я не хотел, чтобы об этом кто-то узнал, — говорит Ильгиз. — Я очень дорожу родителями, такими новостями я боюсь их шокировать — они могут даже отказаться от меня. Я в этой жизни ничего не получил, самое дорогое в ней — мои мама и папа, их я не могу потерять.

Ильгиз не раскрыл свои личные данные, не рассказал о заболевании родным и остался работать в России. Но решил вести другой образ жизни и старается не возвращаться к прошлому.

Помимо трудностей с работой, иностранцы с ВИЧ не могут в России получать образование, даже платно. Четыре года назад учиться на стоматолога в Тверь из Узбекистана приехал Амир. Он был на последнем курсе института, когда узнал, что болен.

Так же как и Ильгиза, Амира никто не проконсультировал о заболевании. Вместо этого врачи стали настаивать, что ему надо встать на учет — якобы тогда он сможет бесплатно получать терапию, как и другие иностранцы.

— Конечно, это было обманом, — возмущается Амир. — Только после того, как они забрали мои данные, мне сказали о депортации. Состояние тогда было… самое дно. Какая депортация? Я не могу бросить учебу, я семь лет уже проучился на стоматолога. Плюс я отношусь к сообществу МСМ (мужчины, занимающиеся сексом с мужчинами. Термин принят в организациях, помогающих людям с ВИЧ. — Прим. ТД). Возвращение обратно закончилось бы очень плохо.

Амир узнал о своем статусе в январе 2020 года. Он до сих пор об этом никому не сказал. Молодой человек только хотел рассказать об этом парню, который, скорее всего, его заразил. Но они не виделись год, и Амир не смог его найти и поговорить с ним.

— На моей родине все считают, что ВИЧ болеют только грешники. Я сам был воспитан в таких убеждениях. Там не знают, что есть терапия, что те, кто лечится, не заразны, все думают, что если у тебя ВИЧ, то ты обречен. Но вот я уже год живу, и все в порядке.

Это просто надо сделать, и все

У мигрантов с ВИЧ, которые остаются нелегально в России, нет доступа к плановой медицине. Они могут рассчитывать только на экстренную помощь врачей.

Из-за того что мигранты не могут принимать АРВ-терапию, их иммунитет снижается, вирусная нагрузка растет, начинаются осложнения. К тому моменту, когда они попадают в больницу, им уже требуется длительное лечение, которое российское государство им обязано предоставить.

Но даже с доступом к экстренной медицине могут возникнуть трудности. В ожидании депортации Рамис провел в центре временного содержания иностранных граждан несколько месяцев, долгое время у него держалась температура сорок градусов. Лечить туберкулез он начал только в Кыргызстане.

— Четыре месяца я был в больнице. Без денег было очень плохо. Мне операцию там делали: без наркоза — «без ни хрена» — они меня резали.

Невыгодная дискриминация

В Региональной экспертной группе по здоровью мигрантов в регионе ВЕЦА подсчитали, что госпитализация и стационарное лечение мигрантов с ВИЧ обходятся России дороже, чем их обеспечение АРВ-терапией. Так, страна тратит больше 220 тысяч рублей на одного человека с запущенным случаем ВИЧ в больнице, а курс годовой АРВ-терапии стоил бы около 85 тысяч.

Если Россия легализует людей с ВИЧ, они смогут вернуться на родину, встать на учет в СПИД-центре, получить лечение и продолжить работать в России.

— Мы даже не требуем сегодня закладывать бюджет на лечение мигрантов с ВИЧ — достаточно просто убрать норму о выдворении, — говорит Даниил Кашницкий. — Врачи, чиновники почему-то считают, что отмена депортации обязательно повлечет за собой рост расходов, но это не так. От этого абсолютно никто не пострадает, а плюсов будет много. Это просто надо сделать, и все.

Многие страны отменили схожие нормы о депортации 10—15 лет назад. По словам Даниила Кашницкого, ВИЧ — это пандемия и закрытие границ не помогает борьбе с распространением вируса. Европейский суд по правам человека требовал от России полного отказа от дискриминации ВИЧ-положительных иностранцев еще в 2016 году, но за это время законодательство никак не изменилось.

В апреле депутат Государственной Думы Федот Тумусов направил на рассмотрение правительства России законопроект, предлагающий отменить обязательную депортацию мигрантов с ВИЧ, если они получают АРВ-терапию. Председатель правления некоммерческой организации «Гуманитарный проект» Денис Камалдинов уверен, что инициатива улучшит ситуацию с заболеваемостью.

— Человек, который принимает терапию, не будет передавать вирус другим. Отчасти это решит проблему профилактики, — говорит Камалдинов. — Если трудовые мигранты находятся в стране легально, значит они нужны стране. Значит, важно верифицировать все механизмы легализации этих людей вне зависимости от ВИЧ-статуса.

По мнению Камалдинова, если страны, откуда мигранты приезжают, согласятся обеспечивать их терапией, дальше нужно будет решить, кто станет контролировать лечение. Он считает, что за приверженностью к терапии должны следить в системе здравоохранения, а не в миграционной службе.

— Важно рассчитать возможности системы здравоохранения по наблюдению и сопровождению мигрантов либо отработать механизмы, которые связаны с тем, что человек предоставляет анализы для местного здравоохранения.

Тумусов рассчитывал, что инициатива будет успешна:

— По крайней мере, если смотреть на вещи объективно.

Но в середине июля от правительства пришел отрицательный отзыв на законопроект. В отзыве (есть в распоряжении редакции) уточняется, что нет правовых оснований для обеспечения мигрантов терапией за счет средств иностранных государств. Запреты на въезд и проживание иностранных граждан и лиц без гражданства с ВИЧ, согласно документу, установлены «в целях предупреждения распространения ВИЧ-инфекции на территории Российской Федерации». Исключение составляют только люди, у которых есть члены семьи, дети или родители, имеющие гражданство или постоянно проживающие на территории РФ.

Никогда не обратятся за помощью

Традиционно считается, что ВИЧ распространен лишь в определенных группах: среди гомосексуалов, инъекционных наркопотребителей. Риск заражения у них действительно выше, но, согласно официальным данным, основной путь передачи вируса в России — секс гетеросексуальных партнеров. Из-за предубеждений о распространении вируса люди с ВИЧ не сдают анализы, не знают о своем статусе, заражают партнеров и усугубляют пандемию. В 2019 году в России было зарегистрировано 1 068 839 человек, живущих с ВИЧ-инфекцией.

По словам Кашницкого, нет данных, которые бы говорили, что среди мигрантов тенденции распространения ВИЧ отличаются. По всему региону ВЕЦА растет доля сексуального пути передачи и сокращается доля передачи ВИЧ при употреблении инъекционных наркотиков.

Для борьбы с эпидемией доступ к АРВ-терапии должен быть у каждого ВИЧ-положительного человека. В среднем за три месяца лечения вирусная нагрузка снижается настолько, что человек не может заразить других людей, даже своего полового партнера при незащищенном сексе.

Согласно данным исследовательской платформы «Если быть точным», антиретровирусную терапию в России в 2019 году получали только 44% людей, живущих с ВИЧ. Это связано с недофинансированием центров СПИДа, с устаревшими протоколами лечения, а также со стигмой вокруг заболевания — люди боятся обращаться за помощью. Кто-то переживает, что узнают знакомые, что могут возникнуть трудности на работе; мигранты опасаются еще и выдворения из страны.

— Мигранты с ВИЧ никогда не обратятся за помощью, — говорит Рамис. — Они ведь знают: им светит пожизненная депортация.

Приезжие с ВИЧ не только не обращаются к врачам, но и не проходят официальное тестирование на наличие заболевания из-за страха выдворения. Поэтому полной эпидемиологической картины по количеству ВИЧ-положительных мигрантов нет. По официальным данным, в 2019 году ВИЧ выявили у 97 тысяч россиян и всего у 2 тысяч приезжих.

— Данные официального тестирования — это верхушка айсберга, — уточняет Даниил. — У нас нет возможности полагать, что ВИЧ-положительные мигранты представляют хоть какой-либо риск для россиян.

***

Нулевой вирусной нагрузки добились все герои этой статьи. Ильгиз с помощью фонда связался с врачом, который расписал ему план лечения, и сам покупает лекарства в аптеке. Амир получает терапию в некоммерческой организации. Оба пока что остаются в России нелегально. Рамис уже шесть лет получает лекарства в СПИД-центре Кыргызстана.

— Депортация — это неправильно, — считает Ильгиз. — Каждый человек ошибается — вы же не знаете, что будет завтра. Вот и я не знал. Я был уверен не на сто, а на тысячу процентов, что со мной этого не произойдет, я предохранялся, принимал доконтактную и постконтактную терапию, сдавал анализы. Но все равно заболел. Но главное — я знаю о своем статусе и прохожу лечение.

Рамис два года после возвращения на родину не виделся со своей женой и сыном — общался с ними лишь по телефону. Он считал, что с таким количеством проблем и ВИЧ-положительным статусом у него больше не может быть семьи. Потом Рамис начал работать в организации, которая помогает людям с ВИЧ и туберкулезом.

— Врачи из центра спрашивали меня, почему я не зову жену с сыном к себе. Я смеялся: «Вы че, гоните? У меня столько проблем». А потом решился их позвать. Еще два года я под разными предлогами занимался с женой сексом с презервативом. Но потом понял, что с терапией могу иметь здорового ребенка и не заражу жену. Нашей дочери восемь месяцев.

Commentary: An International Pandemic Treaty Should Centre on Human Rights

Published on 10 May 2021 in: The BMJ

 

The proposed International Pandemic Treaty could be undermined by political posturing and national protectionism—or it could be an opportunity to chart a different global future based on human rights. Those in charge of drafting the treaty must begin with a clear look at the grave abuses that have characterized the COVID-19 pandemic: authoritarian power grabs; continuing monopolies in diagnostics, therapeutics, and vaccines; failure to resource health systems; staggering setbacks for women; and an upsurge in violence, including covid-related hate crimes. Poorer and marginalized communities have borne the heaviest burden of policing; unemployment; and lack of food, health services, and security.

States have all-too-easily sidelined the international human rights framework under cover of emergency responses. This cannot continue. Any treaty should address these key issues:

The right to healthMost of the world lacks COVID-19 diagnostics, medicines, and vaccines. A new treaty should uphold the right to physical and mental health, and acknowledge the right of everyone to the benefits of scientific progress and its applications, including through intellectual property waivers. 

An end to weaponizing pandemics—Any new treaty should protect individuals from threat of criminal sanctions linked to infection and reaffirm the Siracusa Principles, which set out clear limits on restrictions of rights during an emergency.

Workers’ rights are human rights—Workers who gave the most in 2020 were protected the least. States should ensure the physical security of health care workers, community health workers and other essential workers, and respect their right to form and join trade unions. Informal sector workers should have the right to continued employment or social security.

Combat gender inequalities—The pandemic has placed a disproportionate burden on women as healthcare professionals, educators, and caregivers; as well as on transgender people and sex workers. States should prioritize social protection, including childcare and sexual and reproductive health services, as well as prevention and response to gender-based violence.

Uphold rights in the digital age—Digital health has boomed during covid-19. A treaty should address the need for universal access to the internet and digital technology, while upholding rights to digital privacy and non-discrimination, and promoting strict regulation of use of health data.

Transparency and trust—The COVID-19 response has been weakened by corruption. A pandemic treaty should ensure states publish detailed information about budgets, expenditures, and procurement on a live portal; as well as the evidence basis for restrictive measures such as lockdowns; and for diagnostics, therapeutics and vaccine approvals. The International Health Regulations require information-sharing about outbreaks: this has been impeded by states silencing whistleblowers. Any treaty must reaffirm the rights to freedom of expression and opinion.

Accountability and community—Any new treaty should not undermine existing human rights. Human rights obligations related to pandemics should be independently monitored by a multi-stakeholder oversight body that meaningfully incorporates civil society. Community expertise and leadership are vital to effective pandemic response: any treaty should recognize, fund, and enable safe environments for community and civil society at all levels. 

The COVID-19 pandemic starkly widened inequalities. We must seize this opportunity to reassert the principle of human equality, which must never be compromised; draw on lessons learned from the past year, and chart a better future

Co-authors: Sara (Meg) Davis is senior researcher, Global Health Centre at the Graduate Institute of International and Development Studies, Geneva, Switzerland. Philip Alston is professor, New York University School of Law and former UN Special Rapporteur on Extreme Poverty and Human Rights, New York, USA. Joseph J. Amon is Clinical Professor and Director of the Office of Global Health at Dornsife School of Public Health, Drexel University, Philadelphia, USA. Edwin J. Bernard is executive director, HIV Justice Network in Amsterdam, the Netherlands. Sarah M. Brooks is programme director, International Service for Human Rights in Geneva, Switzerland. Gian Luca Burci is professor in the International Law Department of the Graduate Institute of International and Development Studies, Geneva, Switzerland. Naomi Burke-Shyne is executive director, Harm Reduction International, in London, UK. Georgina Caswell is programme manager, Global Network of People Living with HIV in Cape Town, South Africa. Mikhail Golichenko is senior policy analyst, HIV Legal Network in Toronto, Ontario, Canada. Anand Grover is director, Lawyers Collective and the former UN Special Rapporteur on the Right to Physical and Mental Health in Mumbai, India. Sophie Harman is professor at the School of Politics and International Relations, Queen Mary University of London, in London, UK. Lu Jun is director of Beijing Yirenping Center in Beijing, China. Rajat Khosla is senior director of research, advocacy and policy at Amnesty International, London, UK. Kyle Knight is senior researcher, Human Rights Watch, Durham, NC, USA. Allan Maleche is executive director, Kenya Ethical and Legal Issues Network on HIV and AIDS (KELIN), Nairobi, Kenya. Tlaleng Mofokeng is UN Special Rapporteur on the Right to Physical and Mental Health. Moses Mulumba is executive director, Center for Health, Human Rights and Development, in Kampala, Uganda. Sandeep Nanwani is chief medical officer, Yayasan Kebaya in Yogyakarta, Indonesia. Mike Podmore is director, STOPAIDS in London, UK. Dainius Puras is a professor at Vilnius University and former UN Special Rapporteur on the Right to Physical and Mental Health in Vilnius, Lithuania. Nina Sun is deputy director, Global Health and assistant clinical professor at the Dornsife School of Public Health, Drexel University, Philadelphia, USA. Nerima Were is deputy director, Kenya Ethical and Legal Issues Network on HIV and AIDS (KELIN), Nairobi, Kenya. 

HJN’s Annual Report 2020
Looking back at an “extraordinary twelve months”

Looking back at an “extraordinary twelve months”

Today, with the publication of our Annual Report 2020, we look back at some of the key highlights of an extraordinary twelve months and look to the future.

The report is published by HJN’s fiscal host, the HIV Justice Foundation, an independent non-profit legal entity registered in the Netherlands as Stichting HIV Justice to specifically serve as the fiscal organisation for the HIV Justice Network and other related activities.

Although 2020 was the year that COVID-19 impacted us all, HIV criminalisation was still a major issue of concern. HJN began highlighting punitive responses to this latest pandemic in our HIV Justice Weekly newsletter in March 2020, as well documenting at least 90 cases of unjust HIV criminalisation in 25 countries through our global monitoring work.

Kevin Moody, who became Chair of the Foundation’s Supervisory Board earlier this year, after joining the Board last September, said: “HJN realised major achievements last year, as outlined in our Annual Report 2020. Aside from fulfilling an essential leadership role in combatting HIV criminalisation and convening diverse partners globally, Executive Director Edwin J Bernard led the team in evaluating its strategy with an eye to remain fit for purpose in a rapidly changing environment moving forward. That this was all achieved in the context of COVID-19 speaks highly of the dedication of the team and partners to reduce unjust criminalisation of people living with HIV everywhere.”

HJN milestones

Despite the many challenges faced by our partners working in-country, and regionally, HJN continued its mission to cultivate a global community of transparency and collaboration between individuals and organisations working to address HIV criminalisation. Key milestones for 2020 included:

Throughout the year, as the lead grantee of the HIV Justice Global Consortium, funded through the Robert Carr Fund, we oversaw the distribution of small grant pots to via our partners working in Eastern Europe and Central Asia, Francophone Africa, Anglophone, and Lusophone Africa, and Latin America; and supported research in Angola and Mexico and legal interventions in Canada, Lesotho, and Zimbabwe.

Key Strengths

In the second half of 2020, we undertook a strategic review which found that HJN’s reputation amongst its stakeholders is strong, based on the expertise within the organisation, work it produces, and its leadership.

HJN has grown over the past year, taking steps to expand the team to complement our existing capacity around campaigns and communications, and finance and administration. We also expanded our governance, adding new Supervisory Board members, and convened our Global Advisory Panel (GAP), an international expert reference group of activists, lawyers, and academics – more than half of whom are openly living with HIV – from all regions of the world who are working on ending HIV and intersectional criminalisation.

Looking to the Future

Edwin J Bernard, HJN’s Executive Director, said: “Although the COVID-19 pandemic is likely to have a long-term, transformative impact on our work, our Strategic Review suggested a number of ways to leverage our expertise and broaden our reach beyond our current core focus. And so, although it has been a part of our analysis on HIV criminalisation for many years, we will be purposefully emphasising an intersectional lens in our future work.”

He added, “This means understanding and more frequently recognising where the issue of HIV criminalisation sits in relation to systemic discrimination that disadvantages people living with HIV on the basis of different, intersecting aspects of their identities, beyond solely their HIV-positive status. We anticipate this will open doors for collaborations and connections at project or funding levels with new partners across this spectrum. We look forward to sharing our new Strategic Plan, which will inform our programming and operations for 2022-2026, very shortly.”

HJN’s Annual Report 2020