Empowering communities in Tajikistan to respond to HIV/AIDS
November 29, 2023
The world marks World AIDS Day on 1 December. It’s a day to show support to people living with human immunodeficiency virus or HIV, and to raise awareness about the measures that countries need to take in their AIDS responses.
This year's World AIDS Day theme, 'Let Communities Lead,' focuses on supporting and financing community-led programming, and legal, policy, and human rights work.
Since January 2003, United Nations Development Programme (UNDP), with funding from the Global Fund, has worked closely with the Ministry of Health and Social Protection of the Population of Tajikistan, as well as with civil society, on disease prevention, treatment, and social support for the people of Tajikistan. This long-term partnership is committed to removing discriminatory, gender, and legal barriers, thus improving access to HIV and TB-related services for affected populations.
In Tajikistan, UNDP is supporting community-led initiatives in the HIV sector. This process involves the collection and analysis of data by community-led organizations to improve HIV services.
Rights + Evidence +ACTion = REACT
Since 2021, UNDP, with funding from the Global Fund, has been supporting the roll-out of the REACT system in Tajikistan. REACT, an acronym for Rights + Evidence + ACTion, is a community-led monitoring intervention designed to empower community-based organizations in monitoring and responding to human rights issues. This initiative has played a key role in addressing various concerns. In 2022 alone, the REACT system documented 810 cases of human rights violations in Tajikistan, with over 50 percent of these cases involving violations against individuals living with HIV.
Each case was carefully documented, and using the REACT database, specially trained staff members – known either as REACTors or street lawyers – located in different parts of the country provided responses to violations of the rights of people living with HIV.
The actions taken to respond to violations include immediate support, referral to professional legal assistance, and advocacy with systematic perpetrators through organizing meetings or training sessions – either in healthcare settings or in the police departments where violations were recorded.
Annually 400-500 consultations are provided by UNDP-supported NGOs via 24/7 legal hotlines to various groups of the population, such as law enforcement services, state and district HIV centres, and people living with HIV on various issues related to human rights – including status disclosure, dismissal from work due to HIV status, illegal detention, and so on.
Farishtamoh Gulova, the coordinator of the REACT project in Tajikistan, says the project aims to tackle the lack of information and public awareness about HIV in society, and the rights of people living with HIV, which leads to violations of their rights.
“The REACT project is precisely aimed at human rights protection,” says Gulova.
“Initiated four years ago, the project focuses on addressing human rights violations, especially among target groups such as people who use drugs, people living with HIV, sex workers, etc.”
According to Gulova, so far REACT has trained eight NGOs in Tajikistan to identify cases of human rights violations, resulting in over 2,000 registered offences since 2020.
Notably, 53 percent of these offences affected women and 47 percent impacted men aged 18-35, leading to problems with family relationship after HIV status disclosure, other disputes, problems with healthcare providers, law enforcement, and so on.
But the project also faces its own challenges, including a shortage of qualified lawyers to provide legal advice locally. Despite these hurdles, the project covers not only districts under Tajikistan central government jurisdiction, but also Sughd, Khatlon and Gorno-Badakhshan regions. In 2023, 130 offences in a range of cases were swiftly addressed, demonstrating the project’s positive impact.
“We’re perceived as volunteers,” says Gulova. “The National AIDS Centre redirects people to us as needed. Thanks to this arrangement of work, we have positive cases where our lawyers have won in court. For example, one case was closed during the trial; a man was released from the courtroom due to insufficient evidence, and due to false charges. Another case involved granting a deferment to a woman because she had a small child. This was also a victory – she was not imprisoned. And the third case also involved a woman who was released from the courtroom thanks to the well-coordinated work of our lawyers.”
Gulova highlights the project's evolving role, not only as advocates for people most affected by HIV and for NGOs, but also as volunteers assisting the National AIDS Centre. This collaborative approach has resulted in successful cases, where individuals were acquitted or granted deferments based on coordinated legal efforts. Strategic analysis of rights violations, facilitated by the REACT system, not only aids individuals but also provides a basis for legislative recommendations grounded in real data.
And by consistently reinforcing responsibility and disseminating preventive information, the project aims to curb not only the spread of the immunodeficiency virus, but reduce stigma in society about it.
Eradicating HIV stigma
The first case of HIV in Tajikistan was reported 32 years ago. Since then, the government, in collaboration with international organizations and the local UNDP office, has diligently worked to combat the infection, achieving commendable progress.
But despite these efforts, myths about the disease persist, and HIV-positive status continues to be stigmatized in society, resulting in discrimination against vulnerable populations. This contributes to a rise in morbidity, with the Ministry of Health of Tajikistan reporting 587 new HIV cases in the first half of 2023 alone – an increase of 39 cases compared to the same period in 2022. The overall number of individuals infected with HIV has surpassed 14,000, with over 9,000 men and 5,000 women affected.
One of these women is Guljahon Ashurova, 35, who has been living with HIV since 2005, having contracted it from her husband.
“He found out about his status three months before I did, after five years of living together,” says Ashurova.
"At that time, we already had children. My husband's health started deteriorating rapidly, and his immune system weakened. First, he was diagnosed with tuberculosis, and later with HIV. After that, I tested positive for HIV too.”
Tragically, two of her children have also tested positive for HIV.
Ashurova took the news calmly, unfamiliar with the implications of HIV stigma in society.
“Very soon after the status was revealed, my husband passed away,” Ashurova says. “Apparently he was already at a severe stage. In addition, he refused to take therapy because of various rumours and stereotypes that the drugs were supposedly made from non-halal ingredients [Note: referring to products from animals not slaughtered according to Islamic practices].”
Now, 16 and 14 years old, Ashurova’s son and daughter are aware of their HIV status, having been prepared for this by their mother from childhood. The family is undergoing antiretroviral (ARV) therapy, and Ashurova, despite the challenges, considers herself a happy woman. Five years ago she remarried, to a man also living with HIV. The couple lives happily and raises their children in mutual support and love.
Overcoming stigma, building a new life
At the age of 24, Atabek Safarov contracted HIV. Unlike Ashurova, Safarov faced more stigma and discrimination.
Safarov first suspected something was amiss with his health upon returning to Tajikistan from Russia, where he had been working. He noticed red spots, similar to blisters, appearing on his body. This prompted him to seek medical advice, leading to blood tests that revealed his HIV status.
Similar to Ashurova, Safarov gained a deeper understanding of HIV through interactions with specialists at the National AIDS Centre.
The news of his diagnosis left Safarov in shock – he believed his life was over. It took a considerable time for him to recover, both physically and mentally, during which he kept his condition concealed from his family.
“I hid my status from my parents for several years,” Safarov says. “What are our traditions? They were looking for a wife for me, they put pressure on me, they insisted that I get married, and so I had to reveal my secret.”
“The relatives, of course, were shocked.”
Stigma and discrimination surfaced within Safarov’s own family, leading to isolation and exclusion. Understanding the lack of HIV awareness among his relatives, Safarov took proactive measures.
“I started attending various courses from NGOs working with people living with HIV, looking for people with a similar fate. Every day I came home and literally destroyed myths about HIV by educating my relatives. After hard and constant work with them, life became easier for all of us.”
Safarov is now thriving. He is married, and he and his wife, who is also HIV-positive, have a healthy one-year-old son. They were brought together by their engagement with local NGOs, and together they work on diverse projects for supporting people living with HIV.
Safarov ’s journey serves as a testament to resilience, education, and the power to overcome societal misconceptions surrounding HIV.
But in some cases, the law itself can be a problem.
Improving legal environment
Since 2020, UNDP in Tajikistan has been providing legal assistance to people living with HIV, focusing on strategic litigation cases pertaining to the criminalization of HIV transmission and exposure. Of particular concern is Article 125 of the Criminal Code of Tajikistan, under which it is a criminal offence to infect someone with HIV or to put them at risk of HIV infection. Based on this article, law enforcement agencies initiate criminal cases against people living with HIV just on the basis of the potential threat of HIV transmission or simply just based on their HIV-positive status. The article carries a penalty of two to three years in prison, and up to five to 10 years in cases of intentional infection involving two or more persons. Due to fear of prosecution under Article 125, people living with HIV often seek partners who are also HIV-positive. This is in part to avoid potential discrimination from HIV-negative partners and legal repercussions during domestic disputes.
Tajik human rights advocates have been calling for the decriminalization of Article 125, criticizing its inconsistent and subjective application. They argue that the law overly focuses on punitive measures, neglecting more effective public health strategies such as disease prevention, rehabilitation, treatment, and controlled medication access.”
Encouragingly, the Government of Tajikistan, influenced by the advocacy efforts of civil society, has introduced draft amendments to the Criminal Code. These amendments aim to remove the provision in Article 125 that criminalizes knowingly exposing others to HIV.
Zebo Kasymova, a lawyer at the Centre for Human Rights, acknowledges these positive legislative changes but points out challenges in their practical implementation. She notes that verdicts have often overlooked key factors like viral load, partner notification, and ARV therapy, leading to uniformly guilty verdicts – even in cases where both partners were aware of each other’s HIV status.
According to Kasymova, the laws in Tajikistan, while complying with all international legal norms and providing all guarantees of protection for people with HIV, in practice do not always correspond to these same norms, and people still continue to face discrimination in a variety of life situations.
“In my practice, I have met judges who thought that if a person has status, then this is necessarily a consequence of indecent behaviour,” says Kasymova.
“There can be other reasons, and no one is immune from infection. There are, of course, positive changes too: after our joint work – conducting training and seminars with judges, lawyers, prosecutors for greater awareness – the general background of perception changed for the better,” says Kasymova.
“But due to frequent rotation (in judicial positions), when new people take their place, we have to work again and again towards awareness and reduction of stigma and discrimination, and the protection of human rights.”
In 2022, the Centre for Human Rights received 234 legal advice requests, a number that increased in 2023, that led to 11 criminal and nine civil cases, addressing issues such as status disclosure, recovery of moral damages, and medical negligence.
However, the anticipated amendments to the Criminal Code, specifically the decriminalization of Article 125, are still pending, leaving human rights activists hopeful for their future adoption and the abandonment of the initial provision of the article.
Low level of public awareness provokes stigma and discrimination
The Tajikistan government, with support from UNDP, the Global Fund, and other partners, is now providing free access to antiretroviral or ARV therapy – drugs, taken daily, that suppresses the HIV viral load, allowing HIV-positive people to live healthy lives and preventing them from transmitting the virus to others.
Moreover, the country recently adopted a National Human Rights Strategy and Action Plan, which aims to enhance the protection of human rights for people living with HIV. This includes improving access to treatment, especially for the most vulnerable populations.
Meanwhile, work goes on to combat public stereotypes of HIV-positive people in Tajikistan, with NGOs reaching out to the people most affected by the spread of the virus.
One of them is SPIN Plus, which engages with drug users and people living with HIV, helping them make informed choices to get their lives back on track. The organization conducts regular preventive measures, while offering legal and psychological assistance.
Persistent issues of stigmatization and social discrimination stem from a widespread lack of public awareness, says Alisher Ismailov, the deputy director of SPIN Plus.
“Due to existing problems of stigmatization, people hesitate to seek treatment and disclose their status,” Ismailov says.
“Even within families, when a person finds out about their HIV status, at best they’re given separate dishes, and at worst they’re simply thrown out of their houses.”
That doesn’t have to happen – if people only knew and understood more about living with HIV, says Ismailov.
“There’s a positive solution that helps to improve the immune system – it’s just one pill a day,” he says, referring to ARV therapy.
*Some names have been changed to protect people’s identity.
Media enquiries: Nigora Fazliddin, Communications Analyst, UNDP Tajikistan, email@example.com