Grace Amodu was 7 years old when she found out she was living with HIV. Until then she had been told to take pills daily for malaria or for headaches but she grew tired of it. Screaming and kicking she told her brother that she was going to stop taking her medicine and that she wanted answers. Her mother took her aside and explained that she was born with HIV and that the treatment would keep her healthy like other kids.

She remembers crying a lot and refusing to leave the house.

To keep her from spiraling out of control her mom encouraged her to join a support group, which she says turned her life around.

As she proudly says she has two children who are both free of HIV. Taking her medication at the same time every day throughout her pregnancy and afterwards meant she was not going to transmit HIV to her babies. "When you take medicine it suppresses the virus and even though I feared my children may have HIV they both tested negative.”

She credits International Community of Women Living with HIV (ICW) Nigeria chapter for giving her hope and confidence.

“ICW was like a backbone, they were there for me like the colleagues, everyone around was standing for me, even the boss, Assumpta Reginald, was like a mother figure to me,” Ms Amodu said. “She held me by the hand telling me that, ‘You can do this and you can become a better person.’

As a result, Ms Amodu has become an HIV advocate and a community pharmacist.

"We go to the hospital and get medicine for people and give them to patients who are maybe not able to access their drugs because they have no transport fare or they are far away or due to the stigma in the hospital they don’t want to come to have nurses and doctors shout at them so we take these drugs down to their doorstep and give it to them,” she explained.

More than 90% of people living with HIV in Nigeria are on antiretroviral medicine but stigma and discrimination are still rampant.

For Ms Amodu the solution is simple. Give people the right information about HIV to break the cycle.

“We need to make people understand that you being HIV positive is not making you less of a human, you are also a human being and you deserve equal rights,” the 28-year-old said.

Stella Ebeh knows all about stigma. She started volunteering in 2004 helping people living with HIV like herself. Then she started working in a health center and became a public health officer. Over the years Ms Ebeh said she has cared for more than 7000 patients and also became a mentor-mother (giving HIV advice to pregnant women and counselling), and an anti-stigma ambassador.

She is very proud of overcoming stigma and as she called it, “walking on it,” but despairs that she is still not a full-time staff member. People living with HIV are very capable and yet we are often overlooked she said, adding, “I work like an elephant but eat like a rat.”

Patients pour in and out of the Marabara health centre on the outskirts of Abuja all day. Ms Ebeh goes from one person to another. She lingers a while with a pregnant woman who also prepares lunch on the premises, Ngozi Blessing.

Ms Ebeh insists on pregnant women taking all the precautions they can to give birth to healthy babies. Her husband and their five children are all HIV negative. Sadly, in Nigeria this is an exception.

Vertical transmission is 25% in the country - that is when a mother passes on the virus to her child during pregnancy or breastfeeding- a record high in the region.

UNAIDS Country Director Leopold Zekeng says this is unacceptable. For him it is a demonstration of the inequalities in terms of access to services.

“Two thirds of the 8 million women who get pregnant every year in Nigeria do not have access to PMTCT (prevention between mother to child transmission of HIV) services during ante-natal care,” he said.  

This is why Nigeria and UN organizations along with other partners are spearheading an effort to end AIDS in children.

Dr Akudo Ikpeazu, Director and National Coordinator, National AIDS and STDs Control Programme (NASCP) said that in the last 2 years they have done an enormous amount of work first trying to get a mapping to understand where all the women are having babies and where they receive ante-natal care if at all.

“A lot of them are in birth homes, they go to traditional birth attendants and many deliver at home and receive services at home and so we have a got new strategy which aims to find them where they are, ensure that they are treated, ensure that we can find them first, ensure that we can  test them, link them into treatment and count every single one that has gained access to care,” she said.

In other words, find all, test all, treat all and report all which happens to be Nigeria’s slogan encapsulating their strategy.

Once that vertical transmission tap, as she called it, is closed, then there will be a smaller pool of children to look after regarding treatment. Dr Ikpeazu said Nigeria intends to put in place an acceleration plan to have more children and adolescents on treatment and push for them to stay on treatment.

For Toyin Chukwuduzie, Director of Education as a Vaccine (EVA), HIV is one part of a larger equation.

“We see the number of unintended pregnancies, we see the burden of HIV especially among  adolescent girls, we also see the sexual and gender based violence happening in our society so these things are in existence, these things are happening, yet adolescents and young people don’t have the information they need to make decisions whether we are talking about schools, whether we are talking about health facilities or even in the homes where there are other adults so there are huge gaps,” she said.

The 35-year-old works with young people to fill those education gaps and build support. She is convinced that a main driver of these gaping holes are inequalities, one in particular.  

"I believe gender inequality is the root cause of many other inequalities so if had a magic wand gender inequality would be the one I would address the first because it’s key,” she said. “Addressing gender inequality is key to unlocking potential, potential of women and girls everywhere in this country.”

Hammering in her point, she added that despite everyone stressing the fact that young people are the force of the future Ms Chukwudize said, "If you are not providing that safe environment, if they are not healthy, if their dreams and aspirations are thrown off the path, how do they become the future that we want to see.”

Global shocks, including the COVID-19 pandemic and the war in Ukraine, have further exacerbated risks for the HIV response in Eastern Europe and Central Asia. The growing HIV epidemic and several waves of migration and refugee crises in the region require urgent and considerable efforts to ensure access to essential HIV services for all people in need. Officials and community representatives from several countries of the region have discussed how to address those challenges using the recommendations of the new Global AIDS Report “In Danger’ during the launch of the Report in Almaty, Kazakhstan.

When the Republic of Moldova faced the first wave of refugees from the war in Ukraine, with 500 000 people passing through within the first few months, there was not much time to prepare.

Svetlana Popovichi, National Treatment Coordinator in the Republic of Moldova, explained: “The Government prepared a legislative framework so that all people, regardless of their residence and available documents, have access to necessary HIV services. Civil society and community organizations worked day and night to connect us to people in need. Together with partners, despite the huge flow, we provided all the necessary services, including PrEP and treatment for pregnant women. We were able to quickly redesign our treatment plans so that everyone—our people and refugees—living with HIV had equal access to treatment and services.”

“This is our universal recommendation for countries in crisis,” said Gabriel Ionascu, UNAIDS Country Director in Kazakhstan. “All people, including foreigners, have to have access to HIV services, otherwise the infection will spread further.”

According to Azamat Dysenov, Director of the Treatment Department in the Ministry of Health of Kazakhstan, the availability of antiretroviral medicines for Kazakhstan citizens living with HIV in the country is 100%. Treatment and prevention programmes are funded from the state budget and available for all Kazakh people free of charge. He said: “Today we are facing new challenges, including active migration movements. We are ready to strengthen cooperation with neighbouring countries, maximize the potential of civil society, and work together to remove barriers to access to HIV services for all who need them.”

“Stigma and discrimination towards people living with HIV and other vulnerable groups, which are worsening during the humanitarian crisis, continue to be the major block to an effective response to the HIV epidemic in this region,” said Eamonn Murphy, UNAIDS Deputy Executive Director and Regional Director for Eastern Europe and Central Asia. “HIV transmission, exposure and nondisclosure are criminalized in all countries. While the majority of countries have decriminalized same-sex sexual relations, stigma against gay men and other men who have sex with men remains common.”

According to the UNAIDS Global AIDS Update: In Danger, in 2021, 160 000 [130 000–180 000] people were newly infected with HIV in Eastern Europe and Central Asia, a 48% increase since 2010. The number of AIDS-related deaths in the region in 2021, at 44 000 [36 000–53 000], is 32% higher than in 2010, despite expanding HIV treatment coverage and availability of new prevention methods and measures to control opportunistic infections. According to UNAIDS, in 2020, 54% of new HIV diagnoses in the region were detected at the late stage (CD4+ <350 cells), which is 10% more than in 2018.

Amir Shaikezhanov, an activist and AmanBol Project Director in Kazakhstan, said it is important to remember “there are people behind these facts and figures. Stigma is difficult to measure, but it hugely impacts access to HIV services for different groups. My friend just recently died from AIDS because he was not ready to disclose his gay status and HIV-positive status, even to doctors.”

The “transgender community has been excluded and not visible for a long time. It is great that the report pays attention to this group, including to a high level of stigma towards transgender people,” said Victoria Primak, a transgender activist in Kazakhstan.

According to the UNAIDS report, COVID-19 exposed an epidemic of violence against women across the region. Baktygul Ismailova, Director of the Network of Women Living with HIV in Kyrgyzstan, emphasized that women living with HIV need protection from violence at all levels.

The report’s recommendations for the region include maximizing the availability of community-led, people-centred services; removing punitive and discriminatory laws, especially those criminalizing HIV and people from key populations; national action; and international solidarity in providing sustainable financing.

“Over the past two years, community organizations have proven their ability to adapt quickly to new challenges, address problems quickly in crisis situations, and provide people with the necessary HIV services. We are ready to take on all the work of providing services to key groups. We have people, experience, knowledge and understanding of what exactly and how exactly needs to be done. Give us this opportunity!” urged Nurali Amanzholov, Leader of the Central Asian Association of People Living with HIV.

Recent developments in the region, including the war in Ukraine, massive waves of refugees and migration, humanitarian challenges and economic slowdown, bring additional challenges in providing HIV and other health-care services to all people in need and ensure sustainable financing. Domestic funding for the HIV response in the region may slow down, and countries that still depend on international resources will not be able to ensure the sustainability of AIDS programmes.

“Consolidated efforts of countries and increased support from the international community are urgently needed,” said Eamonn Murphy.

"My name is Jonathan. Today I'm not going to tell you how I got monkeypox, but how complicated it is to carry this disease", says the activist and crossdresser Jonathan Albinagorta. He is also known as Samantha Braxton, one of the influencers supporting the Ministry of Health in its video campaigning on monkeypox prevention in Peru.

With more than 2300 confirmed cases of Monkeypox by the end of September, Peru had the world's highest infection rate per million people, according to Our World in Data, a collaborative online platform led by researchers at the University of Oxford.

The response to the outbreak in Peru was set up under the leadership of the national HIV strategy team, which developed a plan to raise awareness of the disease. Its public real-time data dashboard, inspired by the COVID-19 response, provided concrete evidence for the rapid of an awareness campaign. However, the same data, mainly from HIV-specialized centres, also had the unwelcome side-effect of increasing stigma and discrimination for some groups of people.

"The data created a biased sample at the beginning. Evidence showed that people living with HIV and some key populations, such as gay men, were among the most affected in Peru", recalls Andrea Boccardi, UNAIDS director for Peru, Bolivia, Ecuador and Colombia. "But these are the very people who have the culture of going to the HIV-friendly services for consultations, for periodical examinations and HIV treatment."

Referral Centers for Sexually Transmitted Infections, known as Cerits, and Periodic Health Care Units provide HIV services for Peru's most vulnerable and key populations. "These groups of people do not go to hospitals where they tend to suffer discrimination. They go to these centres, where the greatest number of monkeypox diagnoses came from at first", explains Boccardi.

Experience in dealing with the HIV pandemic shows that data must be accompanied by adequate information-sharing to the public and impacted groups in a non-stigmatizing way. An inclusive approach and the correct use of language are key to engage with communities so that they become an integral part of the response instead of being driven away.

UNAIDS supported the country in quickly setting up a strategy that included meetings between health officials and civil society representatives. Community leaders also contributed by reviewing messages coming out of the ministry of health.  People also received training to act as spokespeople in media interviews.  

“Often, the communication from the ministry of health ends up being very institutional or quite distant. Something that the community cannot fully digest”, says Mauricio Guitierrez, a GayLatino network activist. “We elaborated friendly visual materials for dissemination. It is important to translate and personalize the information for people and that was what we tried to do by supporting the ministry in these campaigns.”

”As well as informing and clinically diagnosing the most at-risk populations in saunas, hotels, and other sites, monkeypox working group convinced mayors to keep these establishments open and to use them as critical platforms for the dissemination of relevant information on monkeypox directing people to the information and services made available.”

In Peru, LGBTIQ+ people and people living with HIV are the most discriminated against, with 71% and 70% of them, respectively, reporting to have suffered discrimination at some level, according to the National Human Rights Survey released in 2021 by the Ministry of Justice and Ipsos Peru.

“Out of fear of stigma and of what people will say, a lot of us don’t ask and fall into the same trap of ignorance”, says Albinagorta. “It was great that the Ministry placed QR codes in LGBT establishments, for example.”

Alliances with telecom companies and social networking apps, such as Grindr, created opportunities to inform the most vulnerable populations through an estimated 40 million messages focused on monkeypox prevention and treatment. Former COVID-19 spaces were also used for the 21-day isolation period for people not able to comply with thisrequirement, including migrants and refugees.

Despite some early signs of stabilization, the Pan American Health Organization (PAHO) said recently that it is too early to proclaim victory. It called on countries "to intensify the response actions, prioritizing detection, surveillance and community engagement to reduce new cases and put an end to the outbreak in the region." The United States still accounts for more than half of cases, but rapid increases have been witnessed in Brazil, Peru, Colombia, Mexico and Chile in the past month.

The Ministry of Health of Peru is purchasing vaccines through the PAHO Strategic Fund, but the total number of vaccines available for the entire region is 100 000.  The main challenges are the criteria for prioritization as the expected number of vaccines per country will be no more of 5000.

"Many people contacted me after my first video for the ministry of health in Peru. For those who are suspicious, it inspires more confidence to approach someone like me, who has had monkeypox and talks freely about it, than to go to a hospital, an institution or the ministry itself, " says Samantha. "Of course, there are also haters. Some people believe that when a gay man shares that he has had monkeypox, he is stigmatizing himself. But that's not it.”

UNAIDS is saddened by the passing of long-time HIV and public health adviser to the Caribbean, Dr. Michel de Groulard. Michel had more than 30 years’ experience in International Public Health, with around 25 years dedicated to HIV.  

Michel was a French citizen who made the Caribbean his home. He lived in Trinidad and Tobago for several years and up to the time of his passing.  

A medical doctor by training, Michel worked on several public health projects for the French Ministry of Foreign Affairs and provided healthcare to remote, desert villages in Mauritania and Cameroon. He also served as a Public Health Officer in the Grenada Health Ministry and an HIV Project Manager at the Caribbean Epidemiology Centre.

Michel joined UNAIDS in 2001 as a Senior Partnerships Adviser. He went on to serve the Caribbean region in a number of positions with UNAIDS, including Senior Program Adviser to the region for more than seven years. He had just last month concluded a two-year appointment as interim Country Director for the Guyana/Suriname office which he opened in Georgetown in 2005.

In his HIV work over the years, he continuously placed a strong emphasis on the role of civil society at all levels of the response to address risk and vulnerability, gender issues and barriers to access services. Michel provided technical support for the creation of the Caribbean Network of People living with HIV in 1996 and the establishment of the Caribbean Vulnerable Communities Coalition in 2005. For several years he was Vice Chair of Community Actions Resource, Trinidad and Tobago’s oldest organization serving people living with HIV.

Above all Michel was a champion for the marginalized and excluded, especially people living with HIV and key populations. He ensured that communities’ concerns and voices were put at the centre of planning and advocacy. He is remembered by civil society and for championing their critical importance in shaping public policy and delivering services.

Michel never truly retired. Always energetic and committed, he took on several challenges following his initial departure from UNAIDS in 2013. This included the role of Regional Manager for the USAID/PEPFAR LINKAGES programme for the Eastern and Southern Caribbean. He also volunteered with the Alliance Française in Port of Spain.

His interests in epidemiology and public health were enduring. Since the start of the COVID-19 pandemic, for example, he compiled and disseminated daily country and regional graphs tracking new infections and deaths in the Caribbean. His nightly WhatsApp messages to friends and colleagues continued until the night before his passing.

Michel loved to cook and would often entertain friends at home with his famous quiche. He encouraged us all to eat healthily and work out.

Michel served with distinction as an international civil servant, and he touched many lives. He was a real champion for ending inequalities. We have lost a great brother, a wonderful human being and a very committed professional with exceptional leadership skills and understanding of human rights and inclusion. We extend our deepest condolences to his family. We shall miss him.

Estimates indicate that in Indonesia in 2021, only 25% of the 19,000 children living with HIV received life-saving antiretroviral therapy and 2,400 children died from AIDS-related causes.

Despite global scientific breakthroughs providing more effective treatment for adults and children, for many children living with HIV in Indonesia access to antiretroviral therapy remains elusive.  Exacerbating the situation is the entrenched societal and gender inequalities that present barriers to women, adolescents and children to access quality prevention and care services.  

With many competing priorities, national and local commitment of resources to scale-up efforts to eliminate vertical transmission of HIV and increase ARV coverage among children living with HIV remain limited. This has resulted in insufficient investment in community-based services for women, adolescents and children living with HIV.

To reduce AIDS-related deaths among children, and ensure children and adolescents living with HIV have access to high quality comprehensive care and support, Indonesia must expand community-based services and community-led programmes tailored to the needs of these very vulnerable yet often left-out groups.

Lentara Anak Pelangi (LAP), an organization that provides HIV services, including psychosocial support, for children and adolescents living with HIV in Jakarta has seen some successes through their One Child One Life program.

“We want these adolescents to be the next generation of positive leaders and influencers who inspire other teens living with HIV” said Prof. Irwanto, founder of Lentera Anak Pelangi.

The One Child One Life program provides disclosure and post-disclosure support, mental health assessment and care as well as education.

“Lentera Anak Pelangi has supported my daughter since she was very young. LAP’s in-person and online activities have been very helpful for her. Through Sekolah LAP, my daughter has started to learn how to build her self-confidence and open her mind to learn more things. I also learned the meaning of this illness and find friends facing the same struggle and fight to continue to be healthy,” Explained the mother of one LAP beneficiary.

“My son and I have been greatly helped by LAP’s education support. During the pandemic, we often received sembako (staple foods). My son loves to be part of LAP because he gets to meets other teens who share similar circumstances. We also receive information on how to provide care for our family,” another mother said.

Through the One Child One Life program, children living with HIV have been supported to suppress their HIV viral load, return to school and participate in youth support groups.  LAP also supports children with special needs and supplemental nutritional support when required. However, their coverage remains small due to funding and human resource constraints.

“Science has made it possible to diagnose and treat HIV. We have come a really long way in 40 years. In Indonesia, we must eliminate vertical transmission of HIV and ensure that all children living with HIV access life-saving antiretroviral therapy and quality care including psychosocial support when needed.” said Krittayawan Boonto, the UNAIDS Country Director for Indonesia.”

UNAIDS Indonesia together with Lentera Anak Pelangi and other implementing partners continue to call for optimized investments in community-based services and community-led programmes for women, adolescents and children living with HIV. 

The 11^th Assembly of the World Council of Churches (WCC) is meeting in Karlsruhe, Germany, from August 31 to September 8, 2022. The WCC brings together delegates and participants from 345 denominations from around the world, representing more than 500 million Christians.

Faith leaders and activists living with HIV expressed huge concerns for the future of the HIV response. Young people continue to be exposed to HIV; women are experiencing violence in all forms. Governments are moving away from HIV and many ecumenical organizations too.

What we need is a continued engagement with people with HIV and those at risk.

My country depends on international aid, what if we stop having that support?”, said one faith leader.

Another said, “Adolescents and children are not staying on medication, they are getting sick and some of them are dying”. Time is running out for the HIV response, we have to help people to live and stay safe and healthy.

People with HIV in the WCC Assembly are speakers and are leading plenaries, workshops and ecumenical conversations. They are bringing attention to the role of the church and the ecumenical movement to continue responding to the HIV epidemic; not only in relation to HIV stigma, but also in advocacy for a sustainable response to HIV, gender justice, human sexuality and the work on HIV related intersectionality and inequalities. This is a matter of justice, love and reconciliation.

The third thematic plenary Affirming the wholeness of life, included input from Canon Gideon Byamugisha from Uganda. He spoke about the realities of young people exposed to HIV and the consequences of unequal access to COVID-19 vaccines, because of unfair patent systems. He shared his experience of receiving support from Bishop Samuel Ssekkadde in 1998 who was leading the Anglican Church in Uganda and how that support saved his life when he was about to die without access to HIV medications. For many people with HIV, that continues to be a reality today.

Canon Gideon Byamugisha is one of the founders of INERELA+ (International Network of Religious Leaders Openly Living or Affected by HIV). He asked the Assembly participants to adopt the targets of the Global AIDS Strategy: the 95-95-95 strategy, which means that 95% of people living with HIV should be tested, 95% of those, should be on treatment and 95% of those, should have undetectable viral load, meaning that they can no longer transmit HIV and can stay healthy.

On September 2, five faith leaders openly living with HIV shared local experiences of churches responding to HIV stigma. In Argentina, some churches are taking care of transgender, indigenous women living with HIV; in Ghana, other churches are promoting the message of undetectable HIV = untransmitable HIV. In the United States, faith based organizations are providing affordable housing for people living with HIV who are transitioning out from rehabilitation or from the penitentiary system. Churches in Kenya are caring for children orphaned by HIV and they provide care and accompaniment for women who experienced sexual violence.

The workshop presented the results of a six-month case study recently completed by the WCC and Emory University. “We emphasize stigma because we know that it is a major driver of the HIV epidemic,” said Dr. David Barstow, one of the workshop organizers.  “And we emphasize the role of local churches because of the influence they have on their members and on the rest of society.  Local churches, indeed local communities of all faith traditions, are key to eliminating stigma and are therefore key to ending the epidemic.”

Some of the preliminary findings of the study refer to the role of people living with HIV who have a deeper understanding of stigma because of their lived experience.  According to Professor John Blevins, who led the case study team, “…in the case study, when people living with HIV talk about stigma, they describe complexities that are often not apparent to people who do not live with HIV”

One faith leader said that “…despite my congregation’s commitment to stigma reduction, many people with HIV still feel uncomfortable disclosing our status.” The stigma was perceived as something that comes from those “on top” in the church. Another faith leader said, “Every time one of them dies, I die a little bit myself.”

The church and faith communities have much work to do in relation to HIV stigma. “We should be part of the healing hands of God to the world,” said Gracia Violeta Ross, a woman openly living with HIV, who is now leading the Ecumenical HIV & AIDS Initiatives and Advocacy in WCC. Canon Gideon Byamugisha said “…zero percent of our members should feel stigmatized. Surely, we want that going to church should be good for your health!”

It was a proud day for Stacy Velasquez the Executive Director of OTRANS Reinas de la Noche in June as she opened the doors to the community clinic that had just been officially approved as a health post by the Ministry of Public Health and Social Assistance. This meant that a full-time doctor was now in position.  

Around 40 transgender women and sex workers have come to the clinic since the doctor's arrival. The clinic has existed for several years, but with the approval by the Ministry of Health and financial support from the Global Fund and OXFAM, patients now have access to comprehensive care: HIV prevention and diagnosis; prevention, diagnosis and treatment of sexually transmitted infections; psychosocial counselling; medical consultations including hormone therapy; a laboratory service for sexual health testing and a pharmacy.

The clinic offers pre-exposure prophylaxis (PrEP), a biomedical intervention within the combination prevention approach, which refers to the use of antiretroviral drugs by HIV-negative individuals to reduce the risk of contracting the virus.

"In 2016, a comprehensive health strategy for trans people was approved with technical support from UNAIDS. It includes a manual of guidelines for the health care of trans people,” said Stacy. “The community clinic and this strategy are the fruit of the work of almost 18 years of advocacy by the trans community."

OTRANS contributes to the Centro de Documentación y Situación Trans de América Latina y el Caribe (CEDOSTALC), a community-based system for collecting information, monitoring and responding to human rights-related barriers faced by the transgender population in 26 countries in Latin American and the Caribbean.

In Guatemala, transgender women still face exclusion, discrimination, stigma, verbal and physical violence, criminalization, marginalization and a lack of recognition of their rights, resulting in a life expectancy of only 35 to 40 years old. The average life expectancy in the country is 74 years old.

During a visit to the clinic, UNAIDS country director, Marie Engel praised the work of the site and paid tribute to Andrea Gonzalez, the OTRANS legal representative who was murdered in 2021.  

“In Guatemala, the HIV prevalence rate is 22.2% among the transgender population, compared to 0.2% for the general population,” said Ms Engel. “And although new HIV infections declined by 23% among all women between 2010 and 2019 globally, they have not declined among transgender women. And yet, transgender people have less access to HIV services than the rest of the population.”

Stigma and discrimination have a profound negative effect on the mental health of transgender people, which in turn can influence their vulnerability to HIV infection. Data reported to UNAIDS in recent years show that the percentage of transgender people who avoid seeking HIV testing due to stigma and discrimination ranges from 47% to 73%.

Imagine being widely blamed for tragedies that befall your country. Earthquakes. Hurricanes. Floods.

Now imagine being excluded from disaster response efforts because of this.

Lesbian, gay, bisexual and transgender (LGBT) people in Haiti face profound prejudice. Discrimination often undermines life chances. Education and employment opportunities erode. Even accessing healthcare can be difficult.

Founded in 1999, the SEROvie Foundation pairs health promotion for the LGBT community with human rights advocacy and socioeconomic empowerment. Today the organization operates projects in nine geographical departments.

UNAIDS supports SEROvie to ensure that the needs of key population communities are addressed during disaster responses. This intervention ensures people living with HIV continue to receive HIV treatment and have timely access to aid. Beyond the emergency phase, beneficiaries get support to resume generating incomes and reintegrate into their homes. They also receive psychosocial support to cope with grief and trauma.

In 2016 SEROvie founded the J.C Ménard Clinic in Port au Prince. This clinic serves LGBT people and other key populations including female sex workers and their clients. Here SEROvie has distilled more than two decades' experience in providing health and social support into a complete service package.

With the assistance of several collaborators including the U.S. Agency for International Development (USAID), J.C Ménard offers a range of free-to-user services addressing gender-based violence, stigma and discrimination, family planning and HIV prevention, including PrEP. It also provides HIV, STI and TB treatment and care. 

At the in-house laboratory, technicians manage both diagnostics and treatment monitoring. They track individual journeys from positive test to viral suppression. Over the last year the clinic provided facility-based HIV testing for 6,000 people and supported HIV treatment management for over 1,500 clients. Apart from dispensing patients' medicines, the clinic coordinates with other treatment facilities to ensure there are no stockouts and drugs do not expire.

Social workers conduct individual assessments to determine clients' needs. Psychologist, Darline Armand says the most important moment in her work is the first interaction after someone has been diagnosed.

"They need to feel safe," she says.

Peer Supervisor, Gregory Jacques, explained that the clinic employs both peer education and peer navigation as strategic approaches. Educators engage clients about relationships, risk and safety, providing accurate information. Navigators are themselves people living with HIV who walk others through the treatment and care process.

"The thing that makes a difference is that they know you are just like them," one navigator explains.

In the community room clients learn about health and relationships through fun activities. This is also where they meet for support groups and dialogues.

The Monitoring and Evaluation team measures programme performance with painstaking detail. They track everything from the number of people living with HIV identified through index testing to the number of sensitization sessions conducted with Voodoo priests. Over the past year more than 15,000 people received awareness-raising messages on HIV, GBV, stigma and discrimination from the clinic. Over 1,500 people benefit from comprehensive HIV care and treatment services while more than 1,500 are on PrEP.

Steeve Laguerre, SEROvie's co-founder, reflects on the organization’s journey with both awe and clarity.

"The services we provide are entirely determined by the needs of the people we serve," he says. "We seek funding that aligns with their demands. The work is always client-driven." 

This client-centred approach is valuable for the wider Caribbean. According to the 2022 Global AIDS Update, In Danger, last year four of five new infections in the region were linked to key population communities and their sexual partners. At the same time, most of the funding for regional combination prevention activities with key populations comes from international sources. 

“Community-led strategies for patient care help reduce late diagnosis and loss to follow-up while improving treatment outcomes,” said Dr. Christian Mouala, UNAIDS Country Director for Haiti. “These approaches must be adequately resourced and integrated into the national response.” 

KALISITO BIAUKULA, GENENDIT, FIJI

What does International Youth Day mean to you? International Youth Day means highlighting youth voices and a call to action of our voices so that our point of view is integrated across programs and policies. In addition, there should be an emphasis on investing in youth-led organizations and supporting youth activism.

What does a world for all ages look like in the context of the HIV response? Young people should have a say or agency regarding decisions that affect their bodies and life. In the Asia Pacific region where I come from, there are many punitive laws and criminalizations. This fuels stigma and discrimination among young key populations and in my mind increases barriers to much needed HIV services.

We must ensure an intersectional, intergenerational and human rights-based approach to achieving gender equality and the empowerment of young people in all our diversities across the region. We fully recognize the principles of “Do No Harm” and “Leave No One behind.'' I cannot insist enough on consulting all communities in the region.

ERIKA DUPUIS, THE PACT, VICE-CHAIR, CANADA

What does International Youth Day mean to you? International Youth Day is a global celebration of young people’s contributions, innovations, and leadership. It is a day of celebration and reflection on how stakeholders can better sustain and strengthen youth movement-building.

What kind of activism are you doing? The PACT, a global coalition of over 150 youth-led and youth-serving organsaitions, has recently concluded another cycle of the Universal Periodic Review, where we have been supporting youth-led organizations to analyze and address current gaps in HIV response not only with young key populations, but across all generations. The UPR is a key mechanism for highlight human rights violations happening at the country level in the multilateral space, and through our partnership with Sexual Rights Initiative we have been harnessing intergenerational learning to ensure young people have their voices heard in this space too.

What does a world for all ages look like in the context of the HIV response?  A world for all ages in the context of the HIV response is the understanding and promotion of intergenerational solidarity and partnerships to guide future community-based activism.

CHINMAY MODI, GLOBAL NETWORK OF YOUNG PEOPLE LIVING WITH HIV (Y+ GLOBAL), INDIA

What does International Youth Day mean to you? International Youth Day is the day when young people are the ‘cherry on the cake’ and we hear a lot of noise about young people globally. It is the day when all partners recognize youth and their contributions to the world. It is our day of visibility. Our day to sensitize the world on the issues affecting us and our day to showcase the work we have done as youth.

What activism are you doing at Y+ Global?  As a global network of young people, we are tasked with advocating against issues that adolescents and young people living with HIV face including various groups. We design, plan and execute campaigns that raise awareness of the issues faced by young people and hold global leaders and health institutions accountable. We partner with country networks of young people living with HIV and support them in developing their advocacy strategies while also sourcing for small grants to support  capacity-strengthening efforts. We embrace unique adult youth partnership models by advocating for slots for young people in key decision-making spaces such as the Global Fund Country Coordinating Mechanism (CCMs) and the delegations to the Global Health Institutions.

What does a world for all ages mean to you? A world for all ages is a world where young people are not only treated as beneficiaries but as key stakeholders. A world where we have access to equal opportunities to contribute to the HIV response in a fully funded space that is full of trust and investment in youth leadership. It is a world where youth are leading the response in tackling youth issues.

FEDERICO VILLALBA, J+LAC, NATIONAL COORDINATOR, ARGENTINA

What does International Youth Day mean to you? International Youth Day is a celebration of the joint efforts made by organized youth in civil society at the international level to improve the world we live in. This day is a recognition of our power to transform our society and also to leverage our needs into realities 

What kind of activism are you doing?  The Argentine Network of Positive Youth and Adolescents (RAJAP) is an organization of young people living with HIV throughout Argentina. Since its founding in 2009, it has built a nationwide platform that reaches more than a thousand members ages 14 to 30. Its main mission is to create a safe space for all adolescents and young people living with HIV+. We support, train and teach people about their rights as well as do advocacy around HIV.

This year’s theme is ‘Intergenerational Solidarity: Creating a World for All Ages’, what does that mean to you? Although our work and efforts focus on young people and adolescents, intergenerational dialogue seems fundamental to us so that our present objectives are informed by the experiences of young people. As you know there are cross-cutting problems such as stigma and discrimination so intergenerational dialogue is very important not only to carry over past knowledge but for the sustainability of our organization in the medium and long term.

What is your hope regarding the future? I wish for a world in which older adults are not perceived as a social risk and where public policies are clearly oriented towards their care and meeting their needs, if not most of the time informal care networks is usually taken care of by women. Basically, I would like a world in which older adults are not made invisible and they are not perceived as asexual. Ultimately, it would be a world where there is no age bias in which we can join forces and work together for a better world.

We do not need to accept pandemics as fate, experts gathered at the International AIDS Conference concurred. By taking specific, well-evidenced, concrete actions to tackle the inequalities driving them, today’s health threats can all be overcome.

As the latest data reveals that progress in the HIV response is stalling, putting millions of lives in danger, as the COVID-19 crisis drags on, and as Monkeypox presents new risks,  all are being held back by inequalities, and all three viruses are in turn further exacerbating those inequalities. However, a focus on tackling underlying drivers of pandemic risk can enable a successful response, scientists, economists and heads of AIDS programmes concurred.

“There are Monkeypox vaccine doses in Europe but none in Africa. Most people at risk of dying from COVID-19 in lower-income countries have still not received a COVID-19 vaccine. New game changing prevention medicines for HIV will not be widely available in lower income counties for years unless there is a dramatic course correction,” said Winnie Byanyima, Executive Director, UNAIDS, and Under-Secretary-General of the United Nations. “An effective response to disease outbreaks and pandemics means tackling inequalities. That means empowering women and girls to shift power relations between men and women. It means tackling inequalities in access to health services between rich and poor. And it means removing punitive laws that push away from life-saving services LGBTQI+ people, people who use drugs, and sex workers.” 

The application of scientific advancements is currently being undermined by inequalities, delegates at the International AIDS Conference noted.  They recalled how, at the turn of the millennium, civil society and generic manufacturers teamed up to demand access to antiretrovirals  for people living with HIV and their victory against the odds helped save millions of lives. But whilst that battle was won, delegates highlighted that the overall process of research and development, innovation and how that translates into manufacturing, pricing and distribution has remained untransparent and heavily skewed to the interests of rich countries. This played out during the COVID-19 pandemic as tests, vaccines and now antivirals are widely available in rich countries while still scarce in lower-income countries. And now this is repeating again with Monkeypox. 

Inequality is not only about differential risks but is about cycles of power, the imbalance in how laws and policies are implemented, who is empowered by these policies, and who is disempowered. 

“The AIDS movement is one of the best examples of how groups of people experiencing intersecting inequalities can unite to overcome them, leading to millions of lives being saved,” said Professor Joseph Stiglitz, Nobel laureate in economics. “But those gains were not permanent. Now a heating world combined with systemic inequalities mean that new disease outbreaks are becoming more frequent and while technological advancement is important, if there’s not a serious move to tackle inequality, the pattern of prolonged pandemics will only continue.” Professor Stiglitz was speaking at the AIDS Conference’s flagship session entitled “How Inequalities Perpetuate Pandemics: Why We Need a New Approach to End AIDS.”

New HIV infections occurred disproportionately among young women and adolescent girls, with a new infection every two minutes in this population in 2021. The gendered HIV impact, particularly for young African women and girls, occurred amidst disruption of key HIV treatment and prevention services, millions of girls out of school due to pandemics, and spikes in teenage pregnancies and gender-based violence. In sub-Saharan Africa, adolescent girls and young women are three times as likely to acquire HIV as adolescent boys and young men. 

Worldwide, only half (52%) of children living with HIV have access to life-saving medicine, and the inequality in HIV treatment coverage between children and adults is increasing rather than narrowing.​

Racial inequalities drive HIV too. In the United Kingdom and the United States, declines in new HIV diagnoses have been smaller among Black populations than among White. In Australia, Canada and the United States, HIV acquisition rates are higher in Indigenous communities than in non-Indigenous communities. 

Sbongile Nkosi, Co-Executive Director of the Global Network of PLHIV stated “Our experiences to date remind us that responding to pandemics such as HIV and COVID-19 is not just about dealing with a medical condition, it’s also about the environment in which we live and how my social status will determine the care I receive. It means centering interventions around the needs of people, listening to people. When we talk about key populations, we tend to group people. But then we misunderstand inequalities. People live intersecting lives and inequalities affect them differently.” During the disruptions of the last few years, key populations have been particularly affected in many communities – with rising prevalence in many locations. UNAIDS data have shown increasing risk of new infections faced by gay men and other men who have sex with men (MSM) globally. As of 2021, UNAIDS key populations data show MSM have 28 times the risk of acquiring HIV compared to people of the same age and gender identity while people who inject drugs have 35 times the risk, sex workers 30 times the risk, and transgender women 14 times the risk.

Just as tackling inequalities has been key to progress in tackling HIV,  so it is in tackling COVID-19. But too many COVID-19 responses have ignored this. “We have failed to learn a lot of the lessons from HIV/AIDS in the way we responded to COVID-19. And we need to be honest about that and reflect on where we go from here,” noted Executive Director of the Global Fund, Peter Sands.

“It's time not only to know your gaps but to close those gaps,” said Ambassador John Nkengasong, US Global AIDS Coordinator and Special Representative for Global Health Diplomacy. 

Today’s inequalities are bleak. But the most important message is a hopeful one.  We know how to end AIDS by 2030 and also how to overcome Monkeypox, COVID-19 and other current and future health threats: when we tackle the inequalities which drive health risks, we can keep everyone safe.

UNAIDS

The Joint United Nations Programme on HIV/AIDS (UNAIDS) leads and inspires the world to achieve its shared vision of zero new HIV infections, zero discrimination and zero AIDS-related deaths. UNAIDS unites the efforts of 11 UN organizations—UNHCR, UNICEF, WFP, UNDP, UNFPA, UNODC, UN Women, ILO, UNESCO, WHO and the World Bank—and works closely with global and national partners towards ending the AIDS epidemic by 2030 as part of the Sustainable Development Goals. Learn more at unaids.org and connect with us on Facebook, Twitter, Instagram and YouTube.