Feature Story

Young role models combat HIV stigma in Central Asia

22 June 2023

Last year, Elina Kruglova made a bold decision. She disclosed her HIV status during the casting of a popular reality TV show in Uzbekistan.

“I disclosed my status right at the casting because the project lasted for several months, and I needed to take medicine daily,” she said. “I made the decision to be honest and mustered up the courage. I thought they wouldn't accept me, but I passed the casting," Ms Kruglova explained.

In her second-year student in the Faculty of Agricultural Economics at Tashkent State Agrarian University in Uzbekistan, she grew up in an orphanage. She was the first child living with HIV in her country to start antiretroviral (ARV) therapy seventeen years ago. Despite facing stigma, she has been taking life-saving medicine daily.

Uzbekistan struggles with HIV-related stigma and discrimination.

According to the recent Multiple Indicator Cluster Survey (MICS) in Uzbekistan, 76% of women aged 15-49 in the country would refuse to purchase vegetables from a vendor living with HIV and would not accept children living with HIV attend school with other children. Prejudice is fuelled by a lack of knowledge; only 14% of women in the same age group possess comprehensive information about HIV. Uzbekistan's HIV cases have steadily risen by 44 % in the last six years (31,088 in 2016 to an estimated 45,000 in 2022.)

Throughout the TV show, Ms Kruglova shared her experiences of being an orphan and living with HIV. Over time she became an inspiration for young people and those living with HIV.

"When the TV episode aired, I started contemplating how people would perceive me, what they would say, and how they would react,” she recalled. “Psychologists were working with us during the project, which made it easier for me to handle the pressure."  

To her surprise, people positively reacted when they recognized her on the streets, and she received numerous supportive messages from people living with HIV via Instagram.

"I am grateful for the trust they placed in me " she said.

For her, the Tashkent day-care center for children and families affected by HIV supported by UNICEF and UNAIDS played a crucial role in her life. It provided a safe haven, gave guidance throughout her childhood and teenage years. The center's support group, the professional consultations, and master classes helped her develop practical life skills. She is optimistic about the future and believes that people can change their attitudes towards HIV with the right information and education.  In her mind, hiding only makes things worse.

Aida Muravyova knows all about the power of disclosing her HIV status.

She is a 16-year-old school student in Kazakhstan and learned about her HIV status when she was 6 years old. Although advised against disclosing her status at school and extracurricular activities, Aida chose a different path.  She shared her HIV status with her classmates in school and took on the role of breaking down the myths and misconceptions surrounding HIV in front of her peers and adults.

“When I was told about my HIV diagnosis, I thought to myself, 'Okay, I have red hair, I have HIV, I take pills... what else?!'"

Ms Muravyova found solace through the Teenergizer Movement, a youth-led initiative supported by the Kazakhstan Government, UNICEF, UNAIDS and other donors. Teenergizer aims to empower young people living with HIV. It created a safe space for young women like her to connect, have fun, and share experiences without shame or stigma. The movement has reached many young people in the country, creating a ripple effect of reliable information and support.

When Teenergizer came along, Ms Muravyova invited classmates to join. "They got valid information, learned with me, and even conducted training sessions,” she said. “The most gratifying part was when one of my classmates' mothers, initially frightened by my HIV status, learned about HIV through her child's participation in Teenergizer.”

Her friend told her that her family had an open conversation, hashed out concerns, and now everything is okay.

Gender assessments conducted in several countries of Central Asia, including Kazakhstan, confirmed that gender inequality, stereotypes, customs and practices increase women’s vulnerability to HIV as well as limit their choices and expose them to socioeconomic and health difficulties.

Ms Muravyova refuses to let her HIV status define her or limit her dreams.. "I have seen many people living with HIV, but never in my field of Electrical and Aerospace Engineering... I want to change that perception and demonstrate that living with HIV can be different, cool, and interesting."

The UNAIDS Regional Policy and Equality Officer in Central Asia, Elena Kiryushina, sees role models like Elina and Aida as well as community networks as key.

“Promoting leadership among adolescent girls and young women, fostering positive masculinities in boys and men, providing care and support to adolescents living with HIV, especially those who lost parents and access to comprehensive sexuality education in and out of schools, and supporting gender-transformative approaches are essential steps to address HIV and gender-related stigma and to build foundation for the gender equality in Central Asia and beyond,” she said.

UNAIDS and partners believe empowering women and girls and challenging cultural norms is crucial to address HIV stigma and ensure equal access to support and health services.

Ms Muravyova has one mantra. “Speak, and don't be afraid!,” she said. “We are together, and together we'll make it through.”

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Future doctors take active role in HIV response to end AIDS

28 August 2023

Medical student Anaïs Maillat, 21, joined METIS (Movement of The Students Against Inequalities in Health Access) for a simple reason. The children’s beaming smiles drew her in.

As a member organization of the International Federation of Medical Students Association (IFMSA), the Swiss Medical Students Association (SWIMSA) Switzerland, launched the program CALWHA which works with children and adolescents living with HIV and AIDS in Tanzania.

Ms. Maillat focused on the Mwanza region where the rate of HIV infection is higher than the national average as its project coordinator.

“Our project is currently helping more than 400 children living with HIV and AIDS,” she said. “We organize activity days in hospitals where children and adolescents get check-ups, medicine, a meal, educational activities, and a safe space to play,” she added.

Activity days are held on three Saturdays of each month for children and adolescents aged 0 – 19 years old to improve clinic attendance and treatment adherence. “For many children, the hospital is far, so parents miss work, which has a cost,” Ms. Maillat explained. The project pays for people’s transportation to the hospital and that help allows many children to stay on treatment, according to CALWHA.

Like Ms. Maillat, medical students worldwide are taking an active role in the HIV response in their native countries.

Ana Laura Nascimento, a 21-year-old medical student and member of IFMSA Brazil, became an advocate for sexual and reproductive health rights through Pense Positivo, a project that organizes HIV awareness activities for houseless individuals and sex workers.  

During her school years, Ms. Nascimento said she realized there was a clear demand to educate her peers about sex due to sexually transmitted infection (STI) outbreaks. “We organized Testar é Saber (“testing is knowing”), a campaign to encourage students to get tested for HIV, syphilis, hepatitis B and C,” she said.

That led to information sessions at the university including doctors, public health professionals, and the municipality. As a result, the school now offers testing events twice a year.

Ms. Nascimento went on to lead and become a member of IFMSA Brazil’s National Officers for Sexual and Reproductive Health (NORA).

In Malaysia, another NORA leader, Joseph Hamzah Anwar, is a 25-year-old medical student and a member of Society of MMA Medical Students. He became an outreach worker for People Like Us Hang Out (PLUHO) - an LGBTQ organization based in Kuala Lumpur, Malaysia that focuses on mental health.

“I met doctors who are not sensitized to issues that HIV comes with and this discourages clients from seeking treatment,” he said. In his view, the younger generation of doctors need to be aware and knowledgeable, so people stay on HIV treatment and live their lives like any other person.

As members of IFMSA, these future doctors have been organizing activities with communities as part of the organization’s aim to strengthen its involvement in the HIV response.  They also seek to educate the public about HIV and AIDS and reduce stigma and discrimination in all healthcare facilities.

Representing more than a million medical students as their members, IFMSA also contributes to the Global Partnership to End All Forms of HIV-Related Stigma and Discrimination and holds a leadership role in The PACT, a global coalition of youth-led organizations advocating for sexual and reproductive health rights.  

On August 24, IFMSA, with the International Pharmaceutical Students’ Federation (IPSF) launched a Declaration of Commitment to HIV and AIDS. The Declaration will guide IFMSA and IPSF in their future efforts to contribute to the AIDS response.

All three future doctors hope that the declaration will encourage others to join the global youth movement to end AIDS. “With the activities outlined in the declaration, I believe we are on the right track to end AIDS by 2030,” Mr. Anwar said.

“I truly believe that young people have the potential to unite to end AIDS,” Ms. Maillat said. “We are the generation of unity. Let’s do this. You and me.”

Feature Story

ECOSOC adopts its 2023 resolution on the Joint United Nations Programme on HIV/AIDS

03 August 2023

On 25 July, the United Nations Economic and Social Council (ECOSOC) adopted its 2023 resolution on the Joint United Nations Programme on HIV/AIDS by consensus, at a meeting presided over by the Vice-President of ECOSOC, Ambassador Paula Narváez, Permanent Representative of Chile to the United Nations in New York. 

At the meeting, the Council considered the 2023 report of the UNAIDS Executive Director, which was introduced by UNAIDS Deputy Executive Director for Programmes, Ms Angeli Achrekar. 

Following the debate, Germany, presented a joint statement by Germany and Kenya introducing the 2023 Resolution on the Joint Programme. The two countries had co-facilitated the negotiations in Geneva, Switzerland, earlier in July in their capacity as, respectively, the Chair and Vice-Chair of the UNAIDS Programme Coordinating Board. 

They emphasized their gratitude to Member States for having ensured a consensus resolution that stresses the need to act with urgency to meet the 2025 milestones and targets, as a prerequisite for ending the AIDS epidemic by 2030. The Resolution also notes the importance of the 2021 Political Declaration on HIV and AIDS as well as the Global AIDS Strategy 2021-2026.Other members taking the floor, including Australia, Brazil, the Islamic Republic of Iran, Mexico, South Africa, and the United States of America also commended the co-facilitators for the consultative process. 

Germany and Kenya cautioned that despite continued global progress many countries are off track. They expressed concern about the persistent funding shortfalls experienced by the Joint Programme and its negative impact on the capacity to implement its annual workplan and called for renewed efforts to fully fund the core Unified Budget, Results and Accountability Framework, calling upon existing donors to maintain and step up their contributions, and inviting new donors to join from both the public and private sectors. 

The resolution maintains its call for reinvigorated efforts to protect human rights and promote gender equality in the context of HIV, expressing concern over laws, policies, and practices that hinder access for all people to HIV prevention, treatment, care, and support service, and highlighted the attention needed by key populations, recognizing that efforts to achieve universal health coverage should be informed by the lessons learned from the multisectoral HIV response, including community-based and community-led service delivery. Members speaking from the floor also reiterated the importance of these lessons in preparation for and response to future pandemics. 

The inclusive and multisectoral Joint Programme model established by ECOSOC –which brings together the expertise of several eleven United Nations organizations and is governed by an inclusive Board that includes people most affected by HIV as its members – remains more relevant than ever. The important role of civil society in the AIDS response is recognized in the resolution you will be adopting today, said Ms Achrekar, addressing the representatives of permanent missions in New York. 

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Feature Story

Addressing violence against women sex workers in Peru

27 July 2023

Ángela Villón Bustamante has been a sex worker and human rights activist for her community in Peru for almost 25 years. She has experienced first-hand the violence against sex workers. After she was beaten by a policeman in 1996, she began her activism.  

"I don't want anyone else to end up almost dead like I did. The organization Miluska Vida y Dignidad (Miluska Life and Dignity, in English) is the organisation I created almost 30 years ago to find justice for those of us violated by public forces", recalls Ángela. "It was the first sex workers' organisation in Peru, and its name is in honour of my dear friend Miluska, who died after being beaten by one of them." 

In the same years, transgender woman Alejandra Fang also was imprisoned for sex work, and a police officer asked her to have sex to be released. "I was forced into sex because, as a trans woman, I had no alternative. As a result of that traumatic situation, I decided to become an activist," says Alejandra.   

Like Ángela, Alejandra also turned her negative experiences into opportunities for others so that no one would have to go through the same situations. She then became part of the Casa Trans Zuleymi and now leads Trans Organizacion Feminista (Feminist Trans Organization).   

According to the Peruvian Ombudsman's Office, 95.8% of trans women have been victims of violence, 62.2% are engaged in sex work due to lack of employment opportunities, and only 5.1% have completed secondary education.   

More than 10 cis and transgender sex workers have been murdered since the beginning of this year in Peru – four transgender sex workers in one week alone, by February 1. "This situation spread to other provinces in Peru, and sex workers had to go into hiding for weeks to protect their lives," says Ángela. "We have been unable to work and care for our basic personal and family needs."  

The criminalisation of sex workers prevents them from seeking justice when they are harassed, physically harmed, or otherwise discriminated against. "We often do not report abuse to avoid further mistreatment and because of the stigma attached to our occupation," explains the activist.  

"Whether they are living with HIV, migrants, Afro-descendants or indigenous– all these intersections generate exponential stigma and discrimination and place them in extreme vulnerability," says UNAIDS Director for the Andean Countries (Peru, Ecuador, Bolivia, and Colombia), Andrea Boccardi. "It puts them in such a precarious situation that it makes it difficult to access health services, food security, employment, education, and justice. Although self-employed sex work in Peru is legal, they have always been criminalized."  

Given the situation of violence against sex workers in Peru, the organizations led by Angela and Alejandra, along with other organizations such as the Asociación Civil T.S. Rosas Mujeres de Lucha, are among those implementing a plan with the Peruvian Ministry of Women and Vulnerable Populations to address violence against sex workers in the country.

More than 100 police officers have already been trained by courses designed and facilitated by cis and transgender sex workers. The training provided knowledge on human rights, stigma, and discrimination, and their essential role as guarantors of justice to contribute to adopting a human rights-based approach in their work throughout the country.  

Besides coordinating and facilitating a working group to fight violence and promote the fundamental rights of sex workers with several local and regional organizations and networks, UNAIDS has also partnered with the Public Defender's Office of the Ministry of Justice and Human Rights of Peru and with representatives of the sex workers' community to develop a protocol for the provision of legal assistance and victim advocacy services to sex workers.  

"After so many years, I feel that our voice is now being heard," says Ángela.

 

Related resources

Find out more about HIV criminalization:

decriminalise.unaids.org 

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Supporting women and girls affected by gang violence in Haiti

29 June 2023

At Refuge des Femmes d'Haiti, a small women's community-based organization in the commune of Croix-des-Bouquets, Port-au-Prince, Martha Norcimè, a 34-year-old pregnant woman from the nearby commune of Delmas, completes her training in sewing and macramé—a form of textile produced using knotting techniques.

She is part of a group of vulnerable women deeply affected by the gang violence and warfare that has impacted several areas of the capital since early 2022. Most of her peers came from Croix-de-Bouquets. All of them—including women with HIV—living in challenging circumstances, who have seen their livelihood completely disappear throughout these past two years as violence rose.

"I will soon give birth to my first child. I used to sell food and cleaning products that I was buying on the Haitian-Dominican border between Jimani and Malpasse, and I was then selling in markets in the city and in my neighborhood,” recalls Martha. “But I could no longer continue, given the blockade of the North city entry controlled by armed gangs. So many women traders are raped, kidnapped, or robbed by them."

In the fall of 2022, a joint UN project coordinated by the UNAIDS Country Office in Haiti, with participation from UNFPA, UNDP, and UNICEF, has been launched in partnership with Refuge des Femmes d’Haiti and with the support of FOSREF, a Haitian non-governmental organization. The goal is to support women and girls living this daily reality by empowering and giving them the tools to remain healthy and overcome the feminization of HIV in Haiti.

Haiti’s significant gains made over the past decade in controlling its HIV epidemic are now under threat, particularly in the capital, where a third of the 11.8 million Haitians reside. The brunt of an ongoing socio-economic and security crisis triggered by the assassination of former President Jovenel Moïse in July 2021 is borne by adolescent girls, young and adult women.

The feminization of HIV has long been a feature of the Haiti pandemic with HIV prevalence for females at 2.3%, compared to 1.6% among men. Still, the continuing multi-faced and profound crisis, fueled by such levels of violence, is exposing thousands of women to HIV infection.

In October 2022, a joint human rights report published by the United Nations Integrated Office in Haiti (BINUH) and the Office of the United Nations High Commissioner for Human Rights (OHCHR), entitled Sexual violence in Port-au-Prince: a weapon used by gangs to instill fear denounced collective rape by gangs in the capital as a weapon of war. In May 2023, research conducted by the Global Initiative Against Transnational Organized Crime in Cité-Soleil, another impoverished commune in Port-au-Prince deeply hit by gang activity, found that 80% of the women and girls who participated in the study had been victims of one or more forms of gender-based violence by one or multiple perpetrators.

"We work closely with UN Agencies to support women, victims of violence, make them financially independent and thus reduce the feminization of HIV, sexual and gender-based violence and maternal and neonatal mortality," says Novia Augustin, President of Ref-Haiti, and of the Federation of Women Organizations for the Equality and Human Rights (FEDOFEDH). "Difficulties are several, but the biggest is insecurity and the lack of financial resources. My motivation comes from our results: When I look at the satisfaction on the faces of the women we have accompanied, the recognition they show, I tell myself that it is worth it, despite all the difficulties encountered and the risks incurred."

Martha recalls how Novia opened the door to her for intensive training every day from 8 a.m. to 4 p.m. At the time, she was already pregnant. And despite the pregnancy-related fatigue, she did not miss a single day of class. “I can sew skirts, bonnets, blouses and even sandals!" she says proudly. "But I can't do anything now because of this crisis. Sometimes I even miss my pre-natal appointments with the doctor just because I am afraid to go out."

Besides training, Ref-Haiti also included discussions  on HIV risk and prevention, gender-based violence, sexual and reproductive health, family planning, and cholera. The awareness-raising activities targeted women beneficiaries and hundreds of young girls of other affected communes.

"We are working to support an integrated health response for women and girls so severely affected by gang violence and by socio-economic inequality”, says Christian Mouala, UNAIDS Country Director for Haiti. “We are proud of women-led local organizations such as Refuge des Femmes and their immeasurable efforts to support women to overcome the challenges they face."

All photos by UNDP Haiti

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Asociación Lambda: the second home for LGBTIQ+ migrants in Central America

27 June 2023

As millions of people around the world march in the streets of several big cities this month of June to celebrate and honor Pride Month, in Guatemala, over 200 LGBTIQ+ people in human mobility - applicants for refugee or asylum status or nationals and foreigners in transit – and in need of protection find every year in Asociación Lambda their reason to celebrate pride and life through psychosocial care, legal support, medical follow-up and the provision of a shelter or a safe space to be who they are.

Roberto Gonzales*, a Colombian migrant, is one of them. Like hundreds of thousands of other migrants, he overcame the exhausting experience of crossing the Darien Gap,  a journey in which the dangers include natural hazards and criminal gangs known for inflicting violence, including sexual abuse and robbery. According to statistics from the Government of Panama, from January to April 2023, a record number of 127,000 people crossed the Darien.

Unlike many people who go after the American dream, Gonzales wants to stay in Guatemala because the country has a lot to offer. "LAMBDA, for me, is a unique platform of empowerment. They listen to you; they invite you for training twice a month", he says. "Through Lambda, I have formed a network of friends and support. One should not forget the importance of mental health if we want to move forward."

Asociación Lambda works to improve the livelihoods of this marginalized group by providing technical assistance to community groups in management, governance, leadership, and entrepreneurship skills. Lambda's activities strengthen community organizations through education and training and build action and peer-to-peer learning networks.

Andres Martinez*, from Nicaragua, is thankful to Lambda for their support in successfully processing his refugee claim. In his country, he was persecuted for being a journalist and suffered violence in his community because of his sexual orientation. "It is difficult to reinvent oneself in another country, but my favorite color is green, the color of hope, because I hope one day to return to my country," says Martinez. "Here, at Lambda, I felt supported by a brother. One feels very safe with the staff. The shelter is my second home."

As in many parts of the world, LGBTQI+ people in Central America face a complex reality that exposes them to different forms of violence and discrimination and puts their physical integrity at risk, limits their life options, often forces them to flee their homes, and, in some cases, to escape their own countries. The National LGBTIQ+ Human Rights Observatory, which Lambda coordinates, documented at least 29 violent deaths of LGBTIQ+ people in 2022 in the region, killed for reasons allegedly related to their sexual orientation, gender identity, and gender expression.

As part of the LGBTIQ+ Pride Month activities, Lambda opened the doors of its shelter to a United Nations delegation in Guatemala led by the Resident Coordinator Miguel Barreto for an exchange with migrants hosted and receiving care in their safe space. "I came away from the dialogue more human and supportive, and convinced of the centrality of the United Nations commitment to end discrimination and exclusion, reduce vulnerabilities, and promote the human rights of every human being," said Barreto after the visit and the dialogues.

Along with UNAIDS, several UN agencies, funds, and programmes, like the United Nations High Commissioner for Refugees (UNHCR), the International Organization for Migration (IOM), and the Office of the High Commissioner for Human Rights (OHCHR), have joined forces to support Lambda in different fronts hosting, sheltering and supporting LGBTIQ+ migrants and those in transit or in need of protection.

"Before coming to Lambda, very few of our clients had had sufficient access to information about HIV risks and prevention, many of them are victims of sexual crimes, and it is only when they arrive at Lambda that they are offered information and testing free of charge," explains Carlos Valdés, Director of Lambda. "Some people were already aware of their HIV diagnosis but did not know how to access care services."

Globally in 2021 gay men and other men who have sex with men have a 28 times higher risk of acquiring HIV than the rest of the adult (15-49) male population, and among transgender women, the risk is 14 times higher than adult women (15-49) in the general population

Among over 200 people who came to Lambda in 2022, 19% of the men and 17% of the women lived with HIV.

"The vast majority of these people were trans women and gay men, mainly from Guatemala, Honduras, Venezuela, and Nicaragua," explains Marie Engel, UNAIDS Representative for Guatemala, Nicaragua, and Honduras. "We know that these situations of stigma, discrimination, and violence create barriers to accessing health services, including HIV. We must recognize the greater vulnerability of the LGBTQI+ community to HIV and support their right to health and dignity."

*All names of Lambda beneficiaries in this report have been changed for people’s safety.

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Highlighting the role that faith communities are playing to end AIDS in children and adolescents

27 June 2023

Faith communities and faith-based organizations have a long history of caring for children and adolescents living with and affected by HIV. However, these efforts have not been well documented and hence their contributions have not been well understood nor resourced. Until now.

UNAIDS and PEPFAR have co-published the Compendium of Promising Practices on the Role of African Faith Community Interventions to End Paediatric and Adolescent HIV which goes a long way to addressing this dearth of information. The Compendium documents 41 promising practices that provide evidence of the core roles that faith communities have played in identifying undiagnosed children living with HIV, improving continuity of treatment, supporting adolescents to access psychosocial support, care and treatment, and enabling peer support groups to empower children and adolescents living with HIV. It also documents how faith leaders have driven advocacy to tackle stigma and discrimination and pushed governments for targets to be achieved. Some specific promising practices include:

  • In Zambia, by expanding integrated health service delivery through Health Posts within places of worship, more children were identified when tested for HIV in faith community sites compared with those tested in non-faith community sites, averaging 15% and 7%, respectively, for the semi-annual period in the 2021 Financial Year.
  • In Nigeria, a congregation-based approach to HIV testing in pregnant women, using Baby Showers, found the intervention improved HIV testing among pregnant women (with 93% linkage) and their male partners, who were 12 times more likely to know their status, compared with partners of women giving birth who had not participated in the intervention.
  • Religious leaders and faith-based organizations in several countries have enrolled as Faith Paediatric Champions and have strengthened community engagement through teams sometimes - Christian and Muslim - including religious leaders, youth leaders, as well as men’s and women’s group leaders. Faith Paediatric Champions have advocated to governments and community members for all children and adolescents to be supported to access HIV care and treatment.

The Compendium showcases the transformative impact of faith-based approaches, highlighting innovative strategies, programmes, and interventions that have saved lives and nurtured the well-being of young individuals. By combining the power of faith with evidence-based interventions, these organizations have created a synergy that reaches far beyond medical treatment. They have fostered a sense of belonging, love, and support, creating safe spaces where children and adolescents affected by HIV can find solace, guidance, and empowerment.

The global response to end AIDS in children continues to be inadequate. Every hour eleven children die of AIDS. 1.7 million children are living with HIV and while three quarters (76%) of adults living with HIV are on treatment, only half (52%) of children are. Children living with HIV are even more vulnerable than adults: while children constitute 4% of people living with HIV, they represent 15% of AIDS-related deaths. In their Foreword to the Compendium Winnie Byanyima, the Executive of UNAIDS and John Nkengasong, US Global AIDS Coordinator and Special Representative for Global Health Diplomacy say: “It is a disgrace that the world is not on track to end AIDS in children” and they describe the inequality between adults and children as “heartbreaking.”

However, they also issue a rallying call: “We can end AIDS in children. We must end AIDS in children. Together, we will end AIDS in children. This informative, inspiring, Compendium will be used to save and change children’s lives.”

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The Compendium of promising practices

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Demanding more options for young people who use drugs in Nepal

26 June 2023

“Drugs were a way to escape from reality. But because of it, I have faced a lot of discrimination,” said Yukusna Kurumbang. “After a while I had no one around me. No friends I could contact. I have my family but they do not trust me. I am trying to improve.” 

There aren’t many resources at Ms. Kurumbang’s disposal. She’s fashioned her own path to recovery including volunteering with YKP Lead Nepal—a youth-led organisation. 

“I’m investing in myself and others to escape drugs,” she explained. “I’m trying to control my mind.” 

The organisation’s President, Rojal Maharajan, recalls the feeling of isolation he too faced while using: “It’s very humiliating—the gossiping and negative comments. My family also got sick and tired of me. Eventually I had no one to tell about my problems and my mental health status.” 

He started his advocacy eight years ago after a successful rehabilitation stint.  

“I wanted to do this work to make sure young people who use drugs are treated as human beings. They deserve to have a good life and better opportunities,” he said. 

These deeply personal perspectives help YKP Lead Nepal respond to the addiction challenge facing Nepal’s youth. And it’s a complex challenge.  

There was a 2021 review of the human rights situation of people who use drugs in Nepal by the International Drug Policy Consortium, Recovering Nepal, YKP LEAD Nepal and Youth Rise International. It notes that the Narcotic Drugs Act criminalises not only drug possession, but addiction itself. According to a 2019 survey of people who use drugs, almost half had been arrested for drug use or a related offence. Among people who injected drugs the arrest rate shot up to 63%.  

Treatment for drug dependence is privatised and inaccessible to most, including residents of border towns where services are most scarce. Among those who have had access to drug treatment, one in ten reports having experienced ill-treatment, violence and even torture.

The Government of Nepal has made progress around the provision of harm reduction services including needle and syringe programmes and opiate agonist therapy (OAT). However there are allegations that police frequently harass and detain people visiting these facilities.  

“Punitive drug policies across the region have created a culture of violence and impunity by law enforcement,” said Ikka Noviyanti, Regional Coordinator of Youth LEAD, the Asia and the Pacific young key population network. “This makes it more difficult for people to reach the range of prevention and treatment services they need to stay safe. The situation is even more dire for youths.” 

A 2019 Ministry of Home Affairs survey determined that over three-quarters of people who use drugs in Nepal are under age 30. Another study found that one-third of young people who use drugs started before age 15, with almost half commencing drug use between 15 and 19. The advocates say that in lieu of heroin which is expensive, there’s a growing trend of young people mixing and injecting tranquilizers like Diagepam, Nitrazepam and Dormin. 

Injecting drug use increases the risk of abscesses as well as illnesses including HIV, Hepatitis B and C. HIV prevalence for injecting drug users is 3% for males and 2% for females. By comparison, Nepal’s adult general population HIV prevalence is 0.1%.  YKP Lead Nepal is advocating for disaggregated data so they can better grasp the scale of the HIV burden carried by young people.  

The organisation shares safety information with clients along with clean needles and syringes. During the Covid-19 lockdowns, for example, they home delivered both food and harm reduction packages. Their outreach includes homeless young people.  

But the advocates say that even when clients are aware of the risks, there are barriers to staying safe.  

“Most of them don’t want to go to the service sites,” Mr Maharajan explained. “Many of the young women have told us they are harassed at the OAT clinics. Others have a concern that the people running the needle exchange programmes are from rehabs. They don’t want to be forced to go (to rehab) because they are fearful of torture.”  

UNAIDS Country Director for Nepal, Masauso Nzima, says that the Government of Nepal has made a move in the right direction with its investment in harm reduction services. However, more needs to be done to ensure a people-centred approach to drug policies “if we are to make a sustained difference in the lives of young people”. 

“A critical step is the adoption of laws that treat drug dependence as a health condition rather than a crime. Action is also needed to outlaw torture and ill treatment, holding violators accountable and providing increased oversight for rehabilitation centres. Finally, we are advocating for expanded access to drug treatment and harm reduction programmes, without discrimination,” Mr Nzima said. “That means young people, women and people living in all parts of the country should have equitable access.” 

YKP Lead Nepal goes a step further, calling for designated days for young women to access harm reduction services and for young people to be among the service providers.  

With support from UNAIDS Asia Pacific, Youth LEAD is now piloting a “Regional Healthcare Worker Training Manual: Friendly HIV and SRHR services for young key populations in Asia Pacific”. The approach is meant to address the multiple barriers to young key populations accessing services including concerns about privacy and confidentiality, stigma and discrimination among healthcare providers, inconvenient opening hours and service packages that do not speak to their specific needs. 

“Young people account for one of four new HIV infections in Asia and the Pacific,” Ms. Noviyanti said. “We are failing young people. But with targeted investments for youth-led responses and action we can turn the tide.”

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How to build stigma-free key population services

23 June 2023

At his previous factory job, Tom Wang (not his real name) says coworkers gossiped about his sexuality and made fun of him. When he visited a public health facility for an HIV test, the nurse peppered him with questions like “Why do you need it? Have you been sleeping with many partners?”

Thailand is a country famed for its tolerance. It is among the world’s top locations for gender affirming care. Same-sex sexual activity hasn’t been criminalised since 1956. And the policy tide is turning on other key population issues. A 2021 Drug Law allows for harm reduction as opposed to automatic imprisonment, while a bill is in the pipeline to affirm the rights of sex workers. Yet stigma and discrimination persist. In homes, communities, schools, workplaces and—critically—healthcare settings, discriminatory attitudes can take their toll.

“Microaggressions—intentional or unconscious verbal or behavioural slights toward stigmatised groups—can drive people away from HIV prevention and treatment,” noted UNAIDS Regional Human Rights and Law Adviser, Quinten Lataire. “There are evidence-based approaches for measuring and lowering both overt and subtle stigma and discrimination in healthcare settings.”

It was this need for stigma-free services that led to the establishment of the Rainbow Sky Association of Thailand (RSAT). RSAT offers sexual healthcare for men who have sex with men, migrants, people who use drugs, sex workers and transgender people. It also advocates for the full rights and equity of lesbian, gay, bisexual and transgender (LGBT) communities. Tom Wang is amongst the clients who have benefited from their support.

This work is critical if HIV programmes are to reach and retain key population communities. In Thailand, as in the rest of Asia, these groups carry the heaviest HIV burden. Nationally HIV prevalence is 1% for sex workers, 8% for people who use drugs, 11% for transgender women and 12% for men who have sex with men.

A one stop shop for sexual health services

RSAT’s approach demonstrates how programmes can improve outcomes by implementing strategies to affirm and empower clients. They are jointly supported by PEPFAR, USAID, EpiC, the National Health Security Office (NHSO) and Thailand’s Institute of HIV Research and Innovation (IHRI).

There are no depressing charts or drab walls at their five key population clinics. At the Bangkok site the rainbow motif appears on the floors and walls. There are swarms of cut-out butterflies. Signs are either upbeat and multi-coloured or a soothing blue.

Most of the staff are themselves members of key population groups. All staff receive anti-stigma and discrimination training which even addresses the fine point of body language. Nothing about staff’s interactions should make a client feel judged or uncomfortable. The entire team is retrained annually. There is an internal complaint mechanism that allows clients to confidentially flag issues, as well quality assurance staff to ensure Standard Operating Procedures are followed. Every team member signs a confidentiality agreement.

RSAT’s service package includes on-site testing for HIV and other sexually transmitted infections, Hepatitis C, Tuberculosis and Covid-19. For transgender clients they offer hormone level monitoring. Mental health screenings which evaluate for depression, anxiety and stress have been integrated into the HIV service package. Where required, clients are referred for additional mental healthcare.

“Many of our clients engage in chem sex (recreational drug-use during intercourse). Some clients inject meth so we need to provide more than condoms. They also need clean syringes and needles which are part of our harm reduction package,” said Deputy Director, Kao Kierati Panpet.

Pre- and post-test counselling are critical. All counsellors are certified and accredited by the Ministry of Public Health according to Counsellor Supervisor, Sasiprapha Khamthi. Even before receiving HIV test results, clients know that treatment is available. Following a positive test, the counsellors reassure clients that with treatment they can live a normal life, explained Niphon Raina, Care and Counselling Supervisor.

“We also ask what their concerns are and give basic information about how HIV is and is not transmitted, using a picture book so they are clear on the facts,” Care and Counseling Officer, Bussarin Poonvisitkun added.

RSAT keeps a stock of antiretroviral therapy drugs onsite and can initiate new clients’ treatment on the day of diagnosis by giving them one month’s supply. Although HIV care is provided at the Ratchaphiphat Hospital, RSAT is able to dispense right away in accordance with instructions from a hospital doctor, delivered via telemedicine. Clients living with HIV receive help from the care and support team to navigate their next steps, including attending hospital visits.

RSAT also provides pre-exposure prophylaxis or PrEP services with hospital supervision. Mr. Tom Wang explains how this has protected his health: “I decided to get on PrEP because I am changing partners. To me PrEP is another means of protection in case you are intoxicated or the condom breaks. It’s a way to ensure I stay HIV-free.”

A redress mechanism for rights violations

The organisation advocates for structural changes to eliminate stigma and discrimination. For example, they are currently making recommendations for the Gender Recognition Draft Bill.

“But the reality is that policy and legal changes take a lot of time,” said RSAT Director, Tanachai Chaisalee.

While this longer-term work proceeds, a redress mechanism helps clients address current concerns. RSAT is tapped into the Crisis Response System (CRS) initiated by the Ministry of Public Health in collaboration with the Office of the Attorney General, Ministry of Justice. People with complaints about prejudice or rights violations in any sphere can scan a QR code and report their experience. Reports may also be sent via Facebook, email or LINE, Thailand’s answer to WhatsApp. A multi-disciplinary team conducts investigations and works with the client and other stakeholders to help.

The lion’s share of reports made via RSAT come from transwomen (78%) while gay men have lodged 17% of reports. The most common challenges relate to requirements for gender confirming attire, social exclusion (particularly during job application processes) and HIV status.

RSAT’s Human Rights Manger, Watcharawit Waraphattharanon, shares that they have been able to resolve some cases very quickly. For instance, if a person living with HIV is being forced to take an HIV test as a requirement for work, the Attorney General’s office does an emergency intervention.

“We can close these cases within one week,” he said.

“The work of key population-led, community-based organisations like RSAT is critical to reach those who most need HIV services,” UNAIDS Country Director, Patchara Benjarattanaporn stressed. “The Government’s progress in funding Community-led Health Services and building partnerships between these organisations and the public health system puts us on the path to end AIDS.”

A group of journalists visited the Ozone Foundation as part of the UNAIDS, UNDP, APN Plus and USAID/PEPFAR Southeast Asia Regional Workshop on HIV-related Stigma and Discrimination in Bangkok, Thailand on June 8, 2023. Learn more about this novel training

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Feature Story

The Denver Principles: 40 years on

26 June 2023

Text based on A Brief History of the Self-Empowerment Movement by Sean Strub, former Executive Director, The Sero Project

Forty years ago, visionary activists developed the Denver Principles manifesto, which shaped the active involvement of people living with HIV in the AIDS response. This was a historic first step towards the Greater Involvement of People with HIV (GIPA) principle, which promotes the meaningful participation of people living with HIV in decision-making, not as passive subjects but as protagonists fully involved in the response to AIDS.

This manifesto, written in June 1983, launched the self-empowerment movement for people living with HIV. As Sean Strub, former Executive Director of The Sero Project, writes, The Denver Principles document is historic in its assertion that those who have HIV have a fundamental and inalienable right to participate in decision-making that significantly impacts their lives and survival.” In language that has inspired people living with HIV over the last forty years, the manifesto asserts:

“We condemn attempts to label us as ‘victims,’ a term which implies defeat, and we are only occasionally ‘patients,’ a term which implies passivity, helplessness, and dependence upon the care of others.”

The Denver Principles outlined rights and responsibilities for people living with HIV and provided recommendations to healthcare professionals, family, and friends.

Today, our world has undergone important changes. Despite progress made in many areas of the AIDS response, stigma, discrimination and pervasive inequalities continue to harm the lives of millions of people living with and affected by HIV.  So, have the Denver principles had an impact on the lives of the populations most affected by HIV over the last 40 years? Will the new challenges of our time demand a review and an update of the GIPA Principle? This is what leading HIV activists and UNAIDS have to say about it:

 

Erika Castellanos, Executive Director, Global Action for Trans Equality (GATE)

"The Denver Principles were the foundation of the GIPA Policy, which placed us, people living with HIV, at the center of the response. It gave us a voice; it gave us a seat at the table. Today, it is no longer enough; it is time to evolve from having a seat at the table to being the leaders of the table, the leaders in the HIV response."

 

Alex Garner, Director of Community Engagement, MPact Global

The Denver Principles were a watershed moment in the movement for the rights of people living with HIV. It’s been 40 years and the world, our communities, and the epidemic have fundamentally changed. A clear understanding of the intersectional issues that people living with HIV (PLHIV) face is essential for protecting and defending our rights. Key populations have been the most disproportionately impacted by this disease and an evolution of the Denver Principles needs to integrate the challenges faced by our communities and the structural homophobia and transphobia that have sustained this 42-year pandemic. PLHIV have a fundamental right to pursue a fulfilling sexuality and have control over their own bodies. An update of the Denver Principles requires advancing the audacity of a sexuality of people living with HIV, regardless of their viral load.  

 

Rodrigo Olin, Board Co-chair, GNP+

Forty years on from this declaration, people living with HIV are still continuously treated and addressed as patients; passive entities who have no say about our treatments and the effects on our bodies – as though we are passive agents. People around the world are still diagnosed late, even in developed countries where tools to prevent and treat HIV are available. Challenges remain to effectively embrace and apply the GIPA principles in co-designing community interventions and HIV-care frameworks alongside physicians and researchers. HIV research at all levels requires the involvement of people living with HIV to continue moving forward the quality of life of people living with HIV, wherever they are in the world.

 

Joyce Ouma, Advocacy and Campaigns Officer, Y+ GLobal

I just learned of the Denver principles, and I am glad I did as through my advocacy journey, I have constantly been told by the seasoned advocates that I and other young people are lucky to be living with HIV now, now that there is minimal stigma, now that HIV has been differentiated, and now that we have access to antiretroviral treatment. This made me reflect on the journey that PLHIV have taken to belong.

The Denver principles are the cradle of the meaningful engagement of people living with HIV in all our diversity. As young people living with HIV, we have built upon the GIPA principles to advance our call for the ethical and meaningful engagement of young people in key decision-making spaces to ensure that the mistakes of the past are not repeated now. We now have  people living with HIV clustered into networks to structure our engagement in key platforms. The Denver principles are still as relevant to us now as they were in 1983, and while we have a lot of milestones to celebrate 4 decades later, we are still lagging on the meaningful engagement of young people living with HIV.

The principles need to be revisited to reflect the modern challenges faced by populations living with HIV. Populations of young PLHIV and LGBTIQ are still blamed for the rising incidence rates despite us playing our role to maintain viral loads below detectable levels. Imagine being queer and living with HIV. We all still need to live with dignity.

 

Midnight Poonkasetwattana, Executive Director, APCOM Foundation

The adoption of the Denver Principles in the Asia Pacific region has been uneven. In our region, HIV prevalence is over five times higher for gay men and other men who have sex with men, transgender persons, and people who inject drugs. We did not reach the 2020 targets and sadly most countries and communities are not yet on-track to end AIDS by 2030.

Political leadership is needed to ensure that key populations and people living with HIV are part of the solutions and to ensure increased funding to adequately support key population-led and community-led organizations, networks, and services. 

 

Sean Strub, Mayor of Milford, Pennsylvania, and Former Executive Director, The Sero Project

The Denver Principles impact goes far beyond the HIV epidemic, as the document has inspired people with various life-threatening or stigmatizing conditions around the world to assert their voices in the decision and policy-making that so profoundly affects their lives. Its fundamental message will not change, even as the document may be modified to reflect today's HIV epidemic and/or be made more broadly inclusive of other conditions. Integration of the Denver Principles ideals into healthcare, policy development and service delivery over the past 40 years has been remarkable, yet it is just the beginning.  Change is slow and any paradigm shift as radical as that envisioned by the Denver Principles will meet resistance. But there is no stopping the movement that begun in that hotel room in Denver in 1983.

 

Vanessa Johnson, Co-Executive Director, RIBBON

We honor the courageous efforts of a group of men living with HIV who gave voice to a community of people who, in the early days of the AIDS epidemic, at times, were too fragile, too fearful, or were rendered invisible due to stigma, discrimination, and other systematic challenges.

Like most foundational or governing documents, the Denver Principles are applicable regardless of who is in leadership. Over the 40 years, we have witnessed a transition in national leadership in the United States from white gay men living with HIV to leadership that has grown more racially and ethnically diverse and inclusive of African Americans/Black, Latinx, Asian, Native American, etc., as well as sexual identities, sexual orientation, cultural expressions, and experiences, and with varying levels of accessibility.

 

Linda Scruggs, Co-Executive Director, RIBBON

As we celebrate the momentous 40th anniversary of the Denver Principles, we pay homage to a transformative document that has left an indelible mark on the AIDS response. Today, we stand on the shoulders of those courageous individuals who, in the face of adversity, gave voice to a community silenced by stigma, fear, and discrimination.

These principles have inspired countless individuals, empowering them to assert their rights and demand inclusion in decision-making processes that shape their lives. We must recognize that the journey toward achieving the vision of the Denver Principles is far from over. It is our collective responsibility to ensure that their voices are not only heard but amplified, as we strive for a more just and inclusive society.

In commemorating this milestone, we stand united in our commitment to uphold the principles' fundamental message: that every person, regardless of their background, deserves respect, dignity, and equal access to comprehensive care. The Denver Principles have become a cornerstone of our fight against stigma, discrimination, and structural inequalities, igniting a movement that refuses to be silenced.

 

Yvette Raphael, Executive Director, Advocates for the prevention of HIV

As we reflect on the past 40 years, we acknowledge the progress made and the lives touched by the principles' profound impact. Yet, we must also acknowledge the work that lies ahead. Change, especially transformative change, takes time and unwavering dedication. But together, as activists, advocates, and leaders, we have the power to shape a future where the Denver Principles become a reality for all. People living with HIV globally have benefitted from this vision of those who came before us. It is through their vision that we are able to live full and productive lives and we must never forget that. We are able to engage meaningfully in the response because of this declaration. Over the years women living with HIV become leaders in fighting for HIV prevention because of the Denver declaration showed us it could be done.

We are at a pivotal point in the fight against HIV. Our daughters, our children may face the same challenges as us. The focus now has to be on the prevention of HIV infection. We need to build on the GIPA principles to include the prevention of new HIV infections among adolescent girls and young women.

Why has the recognition and adoption of these principles been so uneven in the world? Because some countries still criminalize and stigmatize those living with HIV with impunity.

 

Immaculate Owomugisha,  ICW Global

The Denver Principles are foundational to our human right to participate in the decision making that impacts our lives. GIPA has created opportunities for vibrant and meaningful engagement of communities of people living with HIV that have propelled the HIV response, however, persistent misogyny, intersectional stigma and discrimination continue to result in harmful tokenization of women living with HIV and spur lack of sufficient investments in networks of people living with HIV, particularly women’s networks around the world.

 

Neil McCulloch, Senior Policy Officer, Global Network of Sex Work Projects (NSWP)

Forty years on, little has shifted for sex workers and other key populations, who remain disproportionately impacted by HIV and accounting for over 70% of all new infections globally. The criminalisation of sex work, HIV status, drug use, same-sex sexual activity, and diverse gender identities, as well as persistent violence, stigma and discrimination, prevents the true meaningful involvement envisioned in the Denver Principles. With anti-rights narratives and regressive laws on the rise again, and increasingly shrinking funding available, we must re-double our efforts to remove these structural and societal barriers and ensure we prioritise key population-led activities, in order to realise the GIPA principles and truly move the dial in the HIV response. 

 

Aditia Taslim, Advocacy Officer, International Network of People Who Use Drugs (INPUD)

“The HIV self-empowerment movement, catalyzed by the Denver Principles manifesto, has been important in galvanising the drug user movement. Although drug user activism has existed for decades, the Vancouver Declaration (2006) titled “Why the World Needs an International Network of Activists who Use Drugs,” not only served as the birth of International Network of People who Use Drugs (INPUD) but also, underlined the roots of all other harms and violations that people who use drugs experience—which are criminalisation, and the repressive and oppressive laws and policies that are fueled by prohibition, moralism, stereotypes and lies. The HIV crisis has provided legitimacy as well as resources for people who use drugs through provision of harm reduction services. Despite its success in bringing down number of new HIV infections in some regions, harm reduction has mostly become co-opted by a medicalised and pathologising approach, removing the rights to make choices regarding own bodies and lives. Only by dismantling prohibition, we will have a society that respects, protects, and promotes the right to self-determination over one’s body, decision and consciousness of people who use drugs.”

 

Christine Stegling, UNAIDS Deputy Executive Director, Policy, Advocacy and Knowledge.

“The Denver Principles continue to serve as a powerful reminder of the importance of the greater and meaningful participation by people living with HIV in shaping the policies and programs that affect their lives. As we commemorate the 40th anniversary of this groundbreaking document, UNAIDS remains committed to following this leadership, and continuing to put the voices and experiences of people living with HIV at the center of our efforts to end the epidemic.”

The Denver Principles (1983)

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