Holy Disrupters: Interviews with Religious Leaders and advocates on HIV and Compassion

Professor Mohamed Karama, working with Islamic Relief on the HIV programme, Kenya

UNAIDS speaks to Professor Mohamed Karama about confronting stigma and his concerns for the future

How has the faith community engaged in the response to HIV?

I am a researcher with the Kenya Medical Research Institute and my background is from the Muslim community. Faith communities have become increasingly engaged, first with HIV then with COVID, and now the faith community are part and parcel of not only health but many other government programmes.

How big of a problem is HIV-related stigma among the Muslim community and how do you deal with that?

Stigma has been very high amongst Muslims because for many years there has been a misconception that HIV is one of the punishments for wrongdoing.  

To address the challenges of stigma we have had to address it from the Islamic scriptures and from the teachings of faith. This is what we have been doing for the last few years, and although stigma still remains, we have been able to break down some of the barriers this way.

“For many years there has been a misconception that HIV is one of the punishments for wrongdoing”

We have been teaching how God prohibits judgement of others, we should never see ourselves as holier than others and we should support the sick. From the Islamic scriptures God says, “I was sick, you didn’t visit me, I was hungry, you didn’t feed me, I was undressed, you didn’t clothe me.” And the people reply, “but you are God how can we do that?”

God says “Your brother was sick, you never visited him, if you had visited him you would have found me there. Your brother was naked, if you had clothed him you would have found me there, your brother was hungry, if you had fed him you would have found me there.” Allah says have mercy on those who live with you on earth so that he the great can have mercy on you as well.

These teachings are very strong, they discourage stigmatization, they discourage looking negatively at the sick, any sickness, HIV included.

What’s the biggest challenge you are facing in Kenya at the moment?

Young people 15 to 24 are sexually very active and increasingly liberalized, unlike before where social containment was very heavy, now it’s no longer the case. So we have to reactivate our HIV prevention programmes and re-strategize how to deal with these new dynamics.

What concerns you about the future?

I want to start with PEPFAR (the United States President's Emergency Plan for AIDS Relief), I’m an epidemiologist and I think that if we slack a little we are likely to lose the momentum, and losing the momentum might be too expensive to rebuild—too expensive to rebuild the motion and to sustain the momentum. The progress we have made in the last 40 years cannot be lost, so much has been achieved to date we mustn’t lose it.

“Losing the momentum might be too expensive to rebuild”

(concerning the reauthorization of PEPFAR)

What can the United Nations do better?

The United Nations also needs to work more closely together as partners with the faith-based community, the technical experts and the researchers. That way not only can we address HIV, but we can also address other pandemics that are likely to come in the future.

Holy Disrupters: Interviews with religious leaders and advocates on HIV and compassion

Thabo Makgoba, Archbishop of Cape Town

UNAIDS speaks to the Archbishop of Cape Town, Thabo Makgoba about his work on HIV and his hopes for the future

What was your experience working on HIV in the early days?

I first started working on HIV in around 1998 when I was a rector in Johannesburg and it was a scary time, I remember the South African television adverts saying ‘AIDS kills’ with a coffin that banged—we were all terrified. Everyone was scared, there was a lot of stigma, parishioners were also dying from fear and lack of knowledge.

"There was an immense fear that life had come to an end…."

Through Archbishop Desmond Tutu and others we knocked on every door and established the Anglican Church of Southern Africa’s AIDS programme called ACSA. We hit the ground running but there was an immense fear that life had come to an end….

How has your work changed today?

Today our work has evolved—from fundraising, to incorporating HIV messages in the liturgy, in the prayers and in the readings. Today we make sure we don’t work in silos, we work with the mining companies, with the other churches and we work from an interfaith context—challenging our governments to do the right thing.

Much has happened in recent years and things have changed. There’s a sense of trust that has developed and partnerships now are much easier. As leaders, we have learned to work together, we’ve learned to work together on the ground, but we’ve also learned to work with our international partners. I’m hugely grateful to PEPFAR. Initially there was a degree of suspicion but once we realized, through UNAIDS, that PEPFAR is there to help us check our own resources and to strengthen our resolve to help people – a great deal of trust has been developed.

“There is nothing more pro-life than PEPFAR.”

I pray that PEPFAR will be reauthorized to ensure that the commitments that we have made are realized. There is nothing more pro-life than PEPFAR. Millions of mothers and children have been saved from dying because of PEPFAR.

UNAIDS has also been essential. UNAIDS has showed us how important numbers and record keeping are, how important data is. We have to be systematic, we have to be thorough in our interventions, understanding that evidence-based interventions are critical.

“UNAIDS has showed us how important numbers and record keeping are, how important data is.”

In faith communities you can drown in the tsunami of problems, you throw yourself into your work without really knowing whether the intervention is working. But through praying, partnering with others, looking at the numbers and seeing the impact on people whose viral load has been reduced has been a great experience—we have learned a lot through working with UNAIDS and PEPFAR.

What does the faith community bring to the response to HIV?

It’s the fact that we are there. We are in every corner, even where governments can’t reach with their 4x4’s we have a little church there, we have a mosque there, we see God’s people every Sunday at the very minimum. We marry we bury we baptize, and we do this work not because we want to be paid or we want constituencies, it is our vocation and our calling.

“We marry we bury we baptize….We are in every corner, even where governments can’t reach with their 4x4’s”

Whether you are a Christian, Muslim, a Jew or a non-believer, you are a child of God and you need healing. We don’t exist for ourselves, we exist in order to show the love and care of God in the communities.

“We smile at you so please smile at us, because together we have made this possible.”

We must ensure that no more children are born with HIV, we must work together to ensure that every child living with HIV has immediate access to treatment and we must ensure that those children will be alive and thrive. That way in 2025 they will come here saying “you have allowed us to live, and we smile at you so please smile at us, because together we have made this possible.”

With just two years left to attain the 2025 HIV prevention target of fewer than 370 000 new HIV infections annually, the world is not on track. In 2022, 1.3 million people became infected with HIV – the urgency to accelerate progress cannot be overemphasized. The Global HIV Prevention Coalition co-convened by UNAIDS and UNFPA ensures a strengthened and sustained political commitment for primary prevention across key policy makers and programme implementers. It includes countries such as Botswana, Cameroon, Eswatini, Lesotho, Malawi, Rwanda South Africa, and Zimbabwe – which have reduced new HIV infections by more than 70% since 2010.  

However, there were disparities across populations and regions. No significant declines were seen among key populations (sex workers, men who have sex with men and people who inject drugs).

Globally, 4,000 new HIV infections occurred among adolescent girls and young women aged 15-24 years, every week – 3,000 of these occurred in Sub-Saharan Africa. Approaches and investments for HIV prevention are currently insufficient to meet global targets.

The directors of National AIDS Coordinating Agencies, Ministry of Health HIV leads from the Global HIV Prevention Coalition focus countries and development partners were convened by the HIV Prevention Leadership Forum, with support from UNAIDS and UNFPA, to reinforce their commitment to stopping new HIV infections. This is part of efforts to ensure effective implementation of expanded HIV programmes with a focus on key and priority populations .

During the meeting, each country identified commitments  that they will drive and will be held accountable for in 2024 as well as technical level actions necessary for programme optimization.  Donors and global technical partners identified opportunities for technical and financial resources available at country level to supplement national resources to drive the action plans. 

The first lady of Namibia and UNAIDS Special Advocate for Adolescent Girls, and Young Women, Her Excellency Monica Geingos urged the country leaders in the HIV response to adapt solutions tailored to their national needs culturally, socio-economically, and politically. Whilst strengthening global collaboration, leaders should strengthen partnerships across sectors within the countries. Success in HIV prevention is possible, however, not only does it require leadership at government level, but also communities must lead.

The Global Prevention Coalition co-chair and former Minister of Health of Botswana, Prof. Sheila Tlou encouraged government leaders to follow the science, make data-driven decisions and ensure community leadership and participation in HIV prevention programming. This will secure gains made, bridge disparities and expedite progress needed for success in HIV prevention.

Dr Ruth Laibon Masha, Co-Chair of the HIV Multi-Sector Leadership Forum and Director, National Syndemic Disease Control Council, underscored the need to secure gains made by extraordinary leaders from multiple sectors who have played a crucial role in advancing the HIV movement and achieving significant progress. “By continuing to lead from the front we can work together towards the goal of delivering a future free of new HIV infections and AIDS-related deaths. It’s time to recommit and finish the race against time “, she added.

Vice Minister, National Disease Control and Prevention Administration (NDCPA) affirmed China’s commitment towards strengthened multisectoral leadership and promotion of a nationally led HIV prevention and health agenda.

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In 2022, the Indian Supreme Court ruled that sex workers were covered by Article 21 of the Constitution which assures every person the right to life. It recognized that sex workers are entitled to equal protection under the law.

The court instructed both central and state governments that sex workers should not be arrested, penalised, harassed or victimised during brothel raids. (Running a brothel is illegal in India. Individual sex work is not.) Nor should the possession of condoms and other safer sex commodities be treated as evidence of an offence. And the police should be sensitised to the community’s rights.

Moreover, the court also stressed the vital need to uphold the basic protection of human decency for the children of sex workers who, “bearing the brunt of social stigma… are removed to the fringes of the society, deprived of their right to live with dignity”. This ruling will help ensure that the children of sex workers can access essential services, including healthcare and education.

To commemorate this landmark judgment, the All-India Network of Sex Workers (AINSW) conducted a three-day National Consultation titled ‘Sisterhood and Solidarity with Sex Workers: One Year Since the Historic Supreme Court Ruling of 2022’. AINSW has been working on the issues of sex worker rights since 2011 across several states.

“Laws make a difference,” said David Bridger, UNAIDS Country Director to India in his keynote address. “The Supreme Court ruling was historic because with this, India joins a handful of countries like Canada and New Zealand that have explicitly instituted legal protection for sex workers. Recognizing the equal worth and dignity of every person is not only ethical, but also critical for ending AIDS.” 

While giving an overview of the Supreme Court ruling, Senior Advocate, Anand Grover, noted that sex workers have taken steps which have contributed to the decline of HIV in India by negotiating condom use with their clients.  A 2021 study found that 98% of sex workers used condoms. The work to educate and empower this community to have safer sex is paying off. HIV prevalence among female sex workers is now just under 2%. Protecting the safety and human rights of key populations expands their access to HIV services, accelerating progress in the response to HIV.

Mr Grover called for a full understanding of the law and how it impacts the lives of sex workers. He also stressed the importance of community participation in law and policy development, noting that the Court itself called for sex workers to be involved in decision-making processes linked to issues which affect them.

Shyamala Natraj, Executive Director of the South India AIDS Action Programme (SIAAP), briefed the audience about what went into making the 2022 ruling possible. She said the judgment was the result of strategic and consistent advocacy which centred on the lived experiences of sex workers.

In 2020, for example, the National Human Rights Commission issued an advisory recognising sex workers as entitled to the same social protection as other informal workers for the first time. Sex workers had been among the hardest hit during the COVID-19 pandemic. Not only did they experience an abrupt loss of income, but some were excluded from state social safety net responses. The fallout was extreme, including hunger, homelessness, debt, depression, and even suicide.

The SIAAP shared an example from Usha Ram (not her real name) from the town of Theni: “I did not have money to pay rent. The house owner forced me to vacate and humiliated me in front of my neighbours for doing sex work. I was on the streets with my children and did not even get the advance back.”  

Ms Natraj encouraged the community to assert their human rights and secure access to the services that would ordinarily be provided to them under the law, including the issue of Aadhar (identification) cards, rations, poverty alleviation support and proof of residence documentation.

But despite the Supreme Court’s ruling that “sex work is a profession” with the same human rights as others, and that sex workers should not be harassed by the police, inequalities, stigma, and discrimination persist. Many sex workers are still reporting police harassment; some say they are still charged for soliciting clients.

To safeguard the human rights of sex workers, experts reiterated the need to implement the Supreme Court judgment at the grassroots level. UNAIDS and its cosponsors are committed to working with communities, policy makers and law enforcement to increase awareness and to ensure the universal upholding of sex workers’ human rights. 

Gathered in Amsterdam for the annual Fast-Track Cities conference between 25 ─ 27 September 2023, cities shared their various initiatives toward achieving key HIV targets.

In Nairobi, Kenya a situation analysis conducted at a granular level helped the county to better understand the gaps in the HIV response and to identify priority actions. The data showed that there was a lack of health service points, especially for key populations and young people living in informal settlements. In addition, stigma and discrimination also keeps people away. Zipporah Achieng, a young person living with HIV navigating the dusty streets of Kibera, one of several informal settlements, can attest to this. “Before, life was not easy, the healthcare workers were not well trained, and when they saw youth coming to the hospital, they would start judging them, discriminating them.”

The Nairobi City County, with the support of the USAID-funded joint UNAIDS-IAPAC Fast-Track Cities project, developed activities to create awareness, address vulnerabilities, and reduce discrimination with a focus on young people. Informal settlements house up to 60% of Nairobi’s population despite covering less than 10% of the city. Over a period of five years, community members worked hand in hand with healthcare providers in the establishment of 30 friendly health centres for young people and men who have sex with men and sex workers. As a result, stigma against people living with HIV has been reduced while the uptake of HIV and other health services increased significantly during this time.  

Ms Achieng is now a peer educator. She goes out in the community sharing her experience and getting people to come to the clinic. “Now I know what is right and what is wrong, I’m happy because life has changed, life is sweet, there is medicine, there is support, and I’m just happy,” said Ms Achieng.

Nairobi's commitment to fast-tracking HIV services for young people and key populations not only contributed to the city's own public health goals but also set an inspiring example for other urban centres in the country.

Discussions about sex and HIV in Indonesia remain taboo and information limited. As a result, HIV-related knowledge is low, especially among young people. In 2018, UNAIDS created an online chatbot named Tanya Marlo and integrated it in the popular messaging application LINE. “Before Marlo, finding reliable information about HIV and sexual health was really hard. It was difficult to get the right information”, says Arisdo Gonzalez, a user of the online application.

Support provided by the Fast-Track Cities project allowed this pilot to grow into a key tool to reach young people and increase HIV prevention and testing.

Last year alone, 200 000 engagements were recorded on social media and on average 100 users are directed to counselling every month. “Tanya Marlo has been an absolute hit among young people in Indonesia,” said Tina Boonto, UNAIDS Country Director in Indonesia. “Young people feel that they can chat with Marlo anytime, anywhere, and in secret, nobody has to know about it.” To ensure its sustainability and further development, a community group, YKS, has taken over the management of the application.

Kyiv joined the Fast-Track Cities initiative in 2016 and had made remarkable progress towards key HIV targets until Russia declared war in Ukraine. Many feared that treatment, HIV services and outreach would disintegrate.  Thanks to emergency funds and the support of the Fast-Track Cities project, a number of interventions were put in place to help those in need, in particular members of key and vulnerable populations like people who inject drugs and LGBTIQ+ members. “Since the invasion, we have managed to maintain our test numbers, didn’t lose a single patient, and ensured continued access to antiretroviral therapy” said Dr. Vitali Kazeka, Director of the Kyiv AIDS center.

One of Kyiv's notable achievements is the establishment of shelters designed to cater to the unique needs of key populations affected by HIV. These shelters provide a safe and supportive environment while also ensuring access to essential healthcare services, counseling, harm reduction programmes, and education about HIV prevention. “The Fast-Track Cities project makes people living with HIV, and those from key population groups, feel like equal citizens of the city… They see that there are special initiatives that care about them and their future,” said Nataliia Salabai, UNAIDS Fast-Track Cities focal person in Kyiv.

Launched in December 2014, the Fast-Track Cities partnership has grown to more than 500 cities and municipalities that have committed to accelerate their local HIV, tuberculosis (TB), and viral hepatitis responses to achieve Sustainable Development Goal (SDG) 3.3 by 2030.

More than half of the world’s population currently live in cities and cities account for a large and growing proportion of people living with HIV, tuberculosis (TB) and other diseases. The risk of contracting, and vulnerability to, HIV and TB infection is often higher in urban areas compared to rural areas, because of urban dynamics such as social networking, migration, unemployment and social and economic inequalities.

UNAIDS’ Global AIDS Update The Path that Ends AIDS underscores 2 main challenges faced by voluntary medical male circumcision (VMMC) programmes: diminished funding and low coverage among men in their twenties and older. Since VMMC was recommended by WHO and UNAIDS in 2007 as key to HIV prevention in high-prevalence settings, about 35 million men have accessed services across the 15 VMMC priority countries. While this shows good progress, the Global AIDS update highlights that VMMC coverage remains far from reaching the 90% global coverage target for impact in many subnational areas of priority countries. Additionally, funding has declined by almost half since 2020 from approximately US dollars 285 million to US dollars 147 million for the 15 countries funded by the United States President’s Emergency Plan for AIDS Relief (PEPFAR). But questions have arisen about VMMC’s cost-effectiveness under growing coverage of other biomedical interventions, such as antiretroviral treatment.

“We need strong political leadership to scale up implementation of VMMC programmes; tackle the inequalities holding back progress; and ensure sufficient and sustainable funding” said Angeli Achrekar, UNAIDS Deputy Executive Director of Programmes. “Countries that are putting people and communities first in their policies and programmes are already leading the world on the journey to ending AIDS by 2030.”

Voluntary medical male circumcision is a simple, safe procedure that has proven to reduce the risk of HIV transmission by up to 60% in heterosexual men. But is it cost effective? For how long must policy makers continue to promote VMMC among adolescent boys and adult men across VMMC priority countries? This is what a group of researchers investigated.

Now published in The Lancet Global Health and using 5 existing mathematical HIV models, the researchers aimed to assess whether providing VMMC for the next 5 years would continue to be a cost-effective use of HIV programme resources in sub-Saharan Africa. The models applied assumptions based on HIV epidemiology in VMMC priority countries focusing on Malawi, South Africa, and Zimbabwe. The impact and cost-effectiveness were projected over 50 years to capture clients’ lifetime HIV exposure and infection.

Findings reveal that a continuation of VMMC was cost-effective even in regions with low HIV incidence; VMMC was cost-effective in 62% of settings with HIV incidence of less than 1 per 100 person-years in men aged 15–49 years, increasing to 95% with HIV incidence greater than 10 per 100 person-years They underscored VMMC’s importance in continuing to avert HIV infections and related healthcare costs over time.

While details of the results varied by country and model (see Box1), overall VMMC was shown to be highly cost-effective and even cost saving in nearly all countries and scenarios.

The authors concluded that despite the scale-up of antiretroviral therapy and low HIV incidence in some settings, the continuation of VMMC for at least the next 5 years is cost-effective in almost all settings considered in this study.

“Clearly, intensified efforts and commitments are needed to scale up VMMC while at the same time sustaining these services to reach men and boys,'' said Dr Meg Doherty, Director of WHO’s Global HIV, Hepatitis and STI Programmes. “The new Global AIDS report shows a widening gap for men that is important to recognize and address efficiently and effectively for their own health and to reduce new infections.’’

These analyses support a call to action on intensified efforts to reach men and boys in general and for continued funding for VMMC programmes. The discussion on VMMC sustainability is crucial. UNAIDS and WHO are urging countries to intensify their efforts in scaling up VMMC to global coverage targets (90%), at the same time address programme sustainability.

In the 2025 HIV Prevention Roadmap, VMMC remains a core component of combination HIV prevention under the pillar of men and boys. It is not only cost-effective, but also, cost-saving in many settings. Accordingly, continued progress towards male circumcision coverage targets in all the VMMC priority countries must be accelerated

Thailand’s HIV response can provide important learning for other Southeast Asian countries, with the experience of having already reached 90-90-97 in the treatment cascade in 2022, on the way to the achieving the “triple 95s”. The country was first in the region to eliminate mother-to-child HIV transmission. AIDS-related deaths have declined by 65% since 2010. With support from Australia’s Department of Foreign Affairs and Trade (DFAT), UNAIDS helped organise for Thailand to share lessons it has learned in its HIV response with Indonesia through a south-to-south learning exchange mission of Indonesian delegates to Thailand.

On day one, the Indonesian Ministry of Health and Thai Ministry of Public Health delegates discussed the HIV epidemic, trends, and challenges in each country. They shared insights on HIV prevention, treatment and stigma reduction in the HIV response. The following day, the mission team visited community organisations— including the Service Worker in Group Foundation (SWING), a non-governmental organization working for sex worker rights, and the Rainbow Sky Association of Thailand (RSAT), an organization that offers sexual healthcare for men who have sex with men, migrants, people who use drugs, sex workers and transgender people.

Multidisciplinary care is provided in Thailand to people living with HIV and to key populations through community service providers, incorporating certified community counsellors, medical technicians and caseworkers at the community facilities, and through doctors, nurses, pharmacists and laboratory scientists through the telehealth system.

Indonesia’s delegates on the visit highlighted that they had found helpful areas to improve community engagement in their national HIV programme, with a focus on effectively addressing the barriers and limitations in the HIV response that are interlaced with stigma and discrimination across Indonesia.

“We learned how Thailand prioritised zero discrimination, one of which is developing an e-learning curriculum for healthcare workers to minimise stigma and discrimination in healthcare facilities,” said Dr Endang Lukitosari, who heads the National AIDS Programme of Indonesia’s Ministry of Health.

Thailand’s delegates shared experiences from their community complaint support and crisis response system. Health workers, communities and clients can use QR codes at various locations to report rights violations, promoting accountability and coordination between health facilities and community organisations.

The Ministry of Public Health of Thailand noted that community workers are actively involved in the HIV response throughout a robust system of accreditation for both individual community health workers and community organisations. There are health insurance options for all users, including three that can be accessed by migrants. These initiatives help create an enabling environment, led by the government, to connect communities with marginalised groups and tackle issues such as loss to follow-up.

Indonesia’s delegates noted the significance of community mobilisation in the HIV response and envisaged that by putting community in the centre they would reach the most marginalised and underserved groups across different islands and highlands in Indonesia.

“Thailand's comprehensive service delivery inspired me, especially through the Ministry of Public Health's accreditation and certification system for communities. This cooperative mechanism across the government and community stakeholders is the one we haven’t sufficiently addressed in Indonesia. Perhaps by applying this approach, we can minimise the gaps in the treatment cascade by ensuring we leave no one behind”, said Irfani from GWL-INA, Indonesia’s network of men who have sex with men and transgender people.

Over the five days, Indonesian delegates explored public HIV service centres and treatment facilities in Bangkok, Thailand and learned about how efforts of communities and government in HIV prevention and control could be streamlined and coordinated by enhancing the continuum of care and minimising loss to follow up. Notably, Thailand emphasised integrated, One-Stop, services as pivotal for a successful HIV response. Indonesia’s delegates sought a pathway for sustainability in the HIV programme through lessons from the continuity of HIV treatment services in Bangkok, which connects clients with community clinics and public health facilities through referral system and telehealth.

Delegates agreed that this learning mission highlighted key features in efforts to reduce stigma and discrimination, mobilise communities in HIV response, and improve access to quality healthcare by tackling barriers. In addition, the mission underscored efforts to support the delivery of client-centred services for key populations. The debriefing concluded with a commitment to continue the technical partnership on HIV between the two countries.

"I believe Indonesia can do it," said Krittayawan Boonto, UNAIDS Country Director of Indonesia. "Indonesia is in a similar situation to the one Thailand faced a few years ago. Thailand's strategies contributed to getting closer to their goals. I see potential in Indonesia to accelerate progress towards triple 95s. I hope these learnings from Thailand mission can advance the HIV response in Indonesia. UNAIDS Indonesia will keep supporting efforts to end AIDS by 2030."

UNAIDS Executive Director, Winnie Byanyima, joined women’s coalitions, government officials, development partners and community groups from across East and Southern Africa to launch the HIV Prevention Choice Manifesto. Led by the African Women Prevention Community Accountability Board and supported by the International Community of Women Living with HIV (ICW) East Africa and Advocacy for Prevention of HIV and AIDS (APHA), the Choice Manifesto advocates for choice in the HIV prevention options available for women and a commitment to expanding access to long-acting HIV health technologies. Further, these options should be people centred, women-centred and women-led.

In her keynote remarks Ms Byanyima focused on three key areas to making women-centred, people-centred prevention approaches work:

• tackling inequalities for girls and women;
• addressing unequal access to health technologies;
• and putting communities & women in the lead.

Ms Byanyima signed the Choice Manifesto on behalf of UNAIDS and committed to supporting and amplifying the voices of African women and confirmed that UNAIDS will continue to convene partners and government to find solutions.

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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.”

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.”