Community mobilization

In Togo, youth and adolescents living with HIV are stepping forward to lead the response against the AIDS epidemic. Through resilience, determination, and a collective vision, they have come together to form a new youth-led network called the Network of Positive Children, Adolescents and Youth Innovating for Renewal (REAJIR+), This grassroots initiative is dedicated to amplifying the voices of all children, adolescents and young people affected by HIV, and is a testament to the power of youth leadership in shaping their future. “We felt the need to create a space where young people living with HIV could be heard and represented,” says Sitsope Adjovi Husunukpe, Executive Director and one of the founding members of the network. “Many of us felt that our needs and concerns, although important, were not given priority in the development and implementation of policies and interventions relating to HIV prevention and care.”

The network’s creation was not without problems. In Togo, where leadership is often adult-driven, it took courage and determination to establish an organization run by and for young people. "Even though we faced difficulties, we knew we had to persist," explains Adjovi. "The environment wasn’t always supportive, but we kept believing in the vision of our network. We wanted to ensure that young people living with HIV, from all walks of life, had a space to advocate for their rights."

The need for young people to be involved in the response to HIV in Togo is clear. According to recent reports, only about 26% of young people aged 15-24 have enough knowledge about how to prevent HIV.[1] Children's performance in terms of adherence to HIV treatment is below the general average of 80.5%[2]. At the same time, 6,200 children aged 0 to 14 are living with HIV[3]. In Western and Central Africa, at least 16% of girls and 12% of boys aged 15-24 have sex before they turn 15[4]. These numbers show that more needs to be done to help young people understand HIV to protect themselves.

“Empowering young people goes beyond raising awareness; it’s about unlocking their potential to drive change. When they take ownership of their advocacy, they become catalysts for progress, shaping solutions that resonate in their communities. By equipping them with the right tools, we invest in a future led by those who understand the challenges firsthand.” says Dr Yayé Kanny Diallo, UNAIDS Country Director for Togo and Benin.

Koffi Emmanuel Hounsime, the network’s president, echoes the importance of youth-led advocacy. “At the beginning, people questioned our legitimacy. They asked, ‘Who are you representing?’ But once we formalized our network and built our credibility, we gained respect. Now, when we speak, we speak with authority on behalf of youth living with HIV across the country.”

Despite these hurdles, the network remains committed to its mission. “We are working not just for ourselves but for the future generation of young people living with HIV,” says Adjovi. "We want to ensure that we have better support, better care improving our life quality, and that we feel empowered to take decisions concerning our own well-being."

The network has already made significant strides. It has actively participated in national HIV dialogues and contributed to the development of the new Global Fund HIV grant, ensuring that the priorities of adolescents and young people are included.

For these young leaders, creating the network is about more than just advocacy. It’s about survival, empowerment, and hope. Emmanuel reflects, “We didn’t just create this network to represent young people, we created it to change lives. Every day, we’re working to make sure that no young person living with HIV feels alone.”

In a modest neighborhood of Bangui, Central African Republic’s capital city, Gniwali Ndangou is rushing to work. She’s a peer educator and community health worker at a youth sexual education centre, CISJEU.  

The same centre that saved her life.

I'm an orphan," she said, “I am the youngest of three sisters.” Throughout her childhood, her legal guardian told her to take pills saying it was anti-malaria and headache medicine. “I was the only one who took treatment every day and it never stopped.”

After threatening to stop taking pills when she was 17 years old, her sister finally told her the truth. She was born with HIV.

Gniwali couldn’t believe the litany of lies. Having recently been forced to quit school as her adopted family struggled to make ends meet, she once again felt abandoned.

 
“Many times, I tried to commit suicide… I wanted to end my life,” she said.

Her sister Astrid said she tried to pull her youngest sibling out of despair and kept hammering to her: “There are no differences between us, we are all humans.”

At her sister’s urging, Gniwali sought help at a youth center, Centre d’information et d’éducation sexuelle des jeunes (Center for Youth Sexual Education and Information) known as CISJEU. Established in 1994, CISJEU has been a beacon of hope for many young people like Gniwali. They offer community-led services ranging from HIV prevention to HIV testing to peer-supported treatment initiation and adherence.  

War and extreme poverty have greatly increased premature death in Central African Republic, leaving seventy-eight percent of the population under 35 years old. Young people struggle to receive an education with less than 4 in 10 adults literate. Gender inequality and gender-based violence also make young girls particularly vulnerable to HIV infection. Out of the 10,000 yearly new HIV infections, 3000 are among 15-24 years old with more than two female infections for every one male infection.

According to a UNICEF survey, less than 20% of young people possess comprehensive knowledge about HIV prevention. The youth center uses peer educators to bridge this knowledge gap and provide youth-friendly services. "We've trained and deployed 160 peer educators (80 in schools while the others are at youth centers) across different districts of Bangui and beyond, ensuring effective outreach and health and body awareness," said Michael Guéret, a program officer at CISJEU.

Chris Fontaine, former UNAIDS Country Director, underscores the importance of peer-led initiatives, “Addressing HIV and sexual health among young people in CAR is not just a health issue but a critical component of sustainable development and peace consolidation.”    

With support from UNAIDS and the Ministry of Health, CISJEU has attained the right to distribute HIV medicine, antiretroviral therapy, among the community.

For Gniwali, CISJEU became more than a sanctuary. Through training programs, she evolved from a beneficiary to a peer educator and community healthcare provider. “I received various certifications such as mobile HIV testing, and psychosocial support."

Leading discussion groups and dispensing life-saving antiretroviral medications to young people, she inspires young women to take care of their health. Her message is clear and powerful: "Being a young woman isn't easy. We must educate ourselves about this disease, fight against it, and prevent its spread in our country.”

This story was first published by News24.com

Eswatini is one of the countries which has been most affected by HIV. At the peak of the epidemic in 2015, almost one out of three people were living with HIV. In 1995, when there was no antiretroviral treatment for people living with HIV, 73 000 people were living with HIV. 2400 people died of AIDS that year. Worried about the rising number of infections and deaths, communities of people living with HIV mobilized to press that antiretroviral treatment be made available for people living with HIV.

One of the key campaigners for access was Hannie Dlamini. Dlamini is now 50 years old and has been living with HIV for 32 years, after finding out about his HIV positive status at the age of 18. He was one of the first people in Eswatini to publicly declare his positive HIV status in 1995 at a time when the stigma and misinformation around HIV was rife.

Dlamini rallied together other people living with HIV as well as non-governmental organizations working to end AIDS in Eswatini, to ensure that everyone living with HIV and in need of treatment had access to it. They formed a community-led organization called Swaziland AIDS Support Organization (SASO) as a support group for people living with HIV. SASO also provided healthy living information for people living with HIV.

“When we asked the government [in 2002] for ARVs in Eswatini we did a pilot project with NECHA [National Emergency Response Council on HIV/AIDS], to see if people would use the drugs.” Dlamini says the response was overwhelming, with many people keen to start the lifesaving treatment. “We initially planned to enrol 200 people on treatment but the demand was 630.” said Dlamini.

Today, Eswatini is one of the countries which has achieved the ambitious 95-95-95 targets (95% of people living with HIV who know their HIV status, 95% of people who know that they are living with HIV are on life-saving antiretroviral treatment, and 95% of people who are on treatment are virally suppressed). This achievement has put the country a step closer to ending AIDS as a public health threat, thanks to the work of community-led organizations, authorities and global partners like UNAIDS, the United States President's Emergency Plan For AIDS Relief (PEPFAR) and the Global Fund to fight AIDS, TB and Malaria who are working with the government and local communities to end AIDS.

Eswatini’s HIV response strategy includes ongoing nationwide testing and treatment campaigns, use of self-testing kits to encourage more people to take up testing at the comfort of their homes, antiretroviral treatment, male circumcision and pre-exposure prophylaxis (medicine to prevent HIV) and other prevention measures. Community organizations such as Kwakha Indvodza are also key in encouraging men to take full responsibility for their wellbeing and reducing toxic masculinity and gender-based violence which are some of the drivers of HIV.

The driving role of communities in Eswatini to end AIDS is acknowledged by the health authorities. According to Dr. Michel Morisho, HIV management specialist at Mbabane Government Hospital, the government “could not have achieved the 95-95-95 without communities.”

Dr. Morisho says as part of the country’s strategy to end AIDS, HIV testing and treatment are part of disease management for every patient who presents at health facilities for any illness. “When people come to the hospital for whatever, or check up, we offer an HIV test to allow them to know their HIV status,” he said. Dr. Morisho added that treatment is important to bring down viral load and is helping people living with HIV to stay healthy. Eswatini is striving to achieve 100-100-100 [in the number of people who know their HIV status, are on treatment and are virally suppressed].” People who are virally suppressed cannot transmit HIV, thus helping in HIV prevention efforts.

Young women living with HIV have also stepped up to fight the spread of HIV in the country, volunteering their time as peer educators to educate young people about HIV and supporting people newly infected to stay on treatment to live healthily and long lives. Ntsiki Shabangu is a 28-year-old young woman living with HIV. She was diagnosed with HIV in 2015, at the age of 19. She opened up about her status in 2017 and is now working with the Eswatini Network of Young Positives, a local non-governmental organisation working to end AIDS among young people providing counselling and HIV awareness training . Ntsiki believes that: “When you share your story, you bring hope to young people.”

While Eswatini is on the path to end AIDS, the country is facing other health burdens associated with aging, including non-communicable diseases such as diabetes and cancer. People living with HIV are not often more affected by these illnesses. Some people living with HIV in Eswatini have developed these comorbidities, which presents the need for the strengthening of the healthcare system to provide easily accessible holistic disease management and treatment along with HIV services to improve the quality of life for people living with HIV. As Thembi Nkambule, a woman who has been on HIV treatment for more than 20 years said: “Most of us are sick. Most of us are presenting with kidney issues. We are presenting with hypertension; we are presenting with sugar diabetes. We have a lot of issues.”

To protect the gains that have been made against HIV in Eswatini, the government should invest more resources in building a resilient healthcare infrastructure to strengthen the system to better meet the health needs of people living with HIV and to prepare for future pandemics. Community-led organisations should also be placed at the centre of HIV response and supported, both financially and politically, to reach more people who need HIV services to end the epidemic by 2030 as a public health threat.

GENEVA/MONACO, 11 April 2024— Winnie Byanyima, the Executive Director of UNAIDS—the organization leading the global fight against AIDS—met with HSH Prince Albert II of Monaco and HSH Princess Stéphanie of Monaco and government officials to strengthen Monaco’s collaboration with UNAIDS.

“Monaco is a long-standing and valued partner of UNAIDS. We continue to work together on our broad programme and also in key countries,” said Ms Byanyima. “What we particularly value is how Monaco shows such innovation in fighting HIV, and we learn from each other.”

During a visit to the Fight AIDS Monaco Association, Ms Byanyima and HSH Princess Stéphanie and Ms Byanyima met with volunteers, staff and members of the Association. Fight AIDS Monaco, founded in 2004 by Princess Stéphanie, supports people living with and affected by HIV in Monaco and the neighbouring area. They also fund projects in Madagascar, Burundi, South Africa, Mauritius, and more exceptionally Ukraine, Lebanon and Morocco.

“My heartfelt congratulations to the Fight AIDS Monaco team, celebrating your 20^th year – an important milestone- and one that shows your sustained commitment to ending AIDS,” said Ms Byanyima. “It is organizations like yours that make a difference for people’s overall well-being: a safe space to share, kindness and compassion when it is most needed.”

As they gathered around an AIDS memorial quilt, Princess Stéphanie said, “We are a small country, but we can achieve great things.” She then added, “Our foundation is a place where everyone is treated with dignity and without judgement. Fight AIDS Monaco is about giving life.”

Ms Byanyima also thanked Princess Stéphanie for her unwavering engagement as a UNAIDS Goodwill Ambassador and expressed her appreciation for the Princess’s work to address HIV-related stigma and discrimination.

Despite huge progress in the HIV response, globally AIDS still claimed a life every minute in 2022. Monaco’s Minister of Social Affairs and Health, Christophe Robino, stressed that his government’s low cases of new HIV infections was a victory but one not to be taken for granted.

“This is a cause that we need to tackle daily and one day we will be able to end AIDS but we must keep talking about it while it still exists,” Mr Robino said.

Since 1988, Monaco has been implementing an integrated policy on ending HIV as a public health threat. The policy has resulted in free, anonymous HIV screening centres as well as prevention and testing campaigns in schools and businesses. 

Earlier during her visit, Ms Byanyima had a working meeting with representatives from the Monegasque government and Fight AIDS Monaco.

Isabelle Berro Amedei, Minister of External Relations and Cooperation said, “Health is one of Monaco’s priorities and that includes the fight against HIV in partner countries. We lead cooperation efforts to support countries where HIV prevalence is high like South Africa, Madagascar and Mozambique.”

Monaco signed a framework agreement with UNAIDS in 2007 and has provided support for UNAIDS work in Haiti (2010-2013), Burundi (2014-2016) and South Africa since 2017. The government of Monaco, Fight AIDS Monaco and UNAIDS vowed to continue their close collaboration on ending AIDS and reiterated their commitment to the Global AIDS Strategy 2021-2026 focusing on ending inequalities to end AIDS.  

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.

FIGHT AIDS MONACO

Founded in 2004 by Princess Stéphanie of Monaco, Fight AIDS Monaco is a non-profit organization that helps people living with HIV. It also raises awareness about HIV prevention in schools and supports access to treatment and services in countries like Madagascar, Burundi, Mauritius and Ukraine. 

Ibu Mawar (not her real name) learned she was living with HIV after receiving a test during an antenatal care visit.

 “I was surprised, of course, when they told me. But I didn’t really doubt or deny the result,” she remembered from the Sorong City Health Office in West Papua. She immediately started treatment to prevent transmission to her son. “Even though I’m positive,” she said, “our child is not.”

In principle, since 2009 every pregnant woman receiving antenatal care in Indonesia should receive an HIV test. And every woman found to be living with HIV should receive medicines to prevent transmission to their babies just as Ms Mawar did.

But this isn’t yet the reality.

In 2022 more than one-third (37%) of all pregnant women in Indonesia did not get screened for HIV and just 18% of mothers living with HIV had access to antiretroviral therapy. There were an estimated 2800 new HIV infections among children that year.

But now stakeholders in Indonesia are mobilising. Not only will they scale-up prevention of mother-to-child HIV transmission services, but they will work toward eliminating vertical HIV transmission while assuring the health and wellbeing of women and children living with HIV. At the centre of this approach is the engagement of women, who comprise roughly one-third of the adult population living with HIV.

In June 2023 Indonesia established the National Alliance to End AIDS in Children. This partnership between government, civil society and international organizations seeks to provide access to health services and support for women and children living with HIV. It has committed to three main priorities. The first is advocacy for the needs of adolescent girls and children living with HIV. Second is promotion and dissemination of information on Prevention of Mother-to-Child Transmission (PMTCT), Early Infant Diagnosis, treatment literacy and comprehensive sexual education. And third is the empowerment of communities regarding issues pertaining to children living with HIV.

The Alliance’s first major initiative was an Elimination of Mother-to-child Transmission symposium—the first ever in Indonesia. Partners have embraced the World Health Organization (WHO) triple target of eliminating mother-to-child transmission of HIV, syphilis and hepatitis B by 2030. A series of sessions were delivered in-person and online. A total of 115 participants from the government, communities, academia, healthcare and media joined the EMTCT Symposium in Jakarta.

Dr. Laila Mahmudah, Head of the Neo Maternal Division at the Ministry of Health, underlined the importance of accelerating EMTCT efforts across the range of issues. She noted that currently 66% of pregnant women received hepatitis B early detection services while just 25% of pregnant women are tested for syphilis.

Multisectoral stakeholders and participants discussed strategies with participants from Malaysia and Thailand, which have both received EMTCT validation for HIV. Dr Anita Suleiman, Director of Disease Control of the Ministry of Health of Malaysia, pointed to the importance of effective leadership and health system governance for country-wide implementation.

“One of the lessons from countries that achieved EMTCT is that it is possible to end AIDS and vertical transmissions, especially in low-prevalence regions like Indonesia, through robust governance and good-quality performance. Indonesia can also achieve EMTCT by 2030, and I hope this symposium leverages the coordination efforts towards the elimination of HIV, syphilis and hepatitis B,” said Dr Shafflq Essajee, Senior Advisor, HIV, UNICEF New York.

However, it was emphasised that political commitment must be bolstered by community-led strategies to reach and retain mothers living with HIV. Community mobilization and community health workers are critical approaches. Ikatan Perempuan Positif Indonesia (IPPI), the national network of women living with HIV, also endorsed the Thai approach of providing free formula for mothers living with HIV in low-resource districts.

Ayu Oktariani, IPPI National Coordinator and a member of the National Alliance to End AIDS in Children reiterated her organization’s commitment to implementing the community-led strategies in support of EMTCT in the coming years.

“This Symposium means more than words I can explain,” said Ayu Raka from the Akar Cinta Kasih Foundation, a community organisation in Bali. “When I return to Bali, I will advocate for EMTCT with local multisectoral stakeholders and communities in my region. I am confident we can make a healthier society and improve health for all mothers and babies.”

UNAIDS Country Director for Indonesia, Krittayawan Boonto, promised the continuous backing of UNAIDS.

“We will continue to support not only mothers, but also fathers, in protecting babies from new HIV infections. I wish for Indonesia to become the fifth country in Asia Pacific to achieve EMTCT. But we can only do it with the leadership of communities,” she ended.

In the quiet corner of a community center in Guatemala City, 29-year-old Emma - fictitious name - sits among other women she does not know. In the faces and gestures of each of them, you can see that they all carry the weight of violence and injustice on their shoulders.

The first subtle rays of sunlight gradually fill the room; calm and comfort invite Emma and the others to feel more relaxed in their hearts and souls. With tired eyes, small hands, and a heart scarred by violence, she looks around, absorbs the energy of the place, and takes a deep breath as she awaits the start of a therapy session and an informative talk about HIV.

As the therapy session began, Emma shyly and cautiously shared her experiences with Wendi Polanco, who, since 2019, has become a helping hand for many women battered by gender-based violence. Through Latiendo Juntas, the organization she leads in Guatemala, Wendi clearly proves that sisterhood works and is transformative.  

With support from UNAIDS, Latiendo Juntas coordinates a project to improve access to comprehensive health services, including sexually transmitted infections (STI) and HIV testing and care for women survivors of violence. They also contribute to their resilience and empowerment by raising awareness of human rights, including their sexual and reproductive rights, through group therapy and HIV information talks, which provide facts and a platform for open dialogue, fostering a non-judgmental environment.

"The room becomes a sanctuary where the pain of women like Emma and so many others is recognized," says Wendi. "The community center is a refuge for them, and a network of support among the women is woven with the sun's warmth. I feel relieved when I see how the weight on their shoulders begins to lessen."

Throughout these therapy sessions, Emma and other women discover comfort and empowerment. The therapeutic journeys offered at Latiendo Juntas become a catalyst for their resilience, liberation, and self-care.

The link between HIV and violence against women is a widespread problem, as gender-based violence increases women's vulnerability to HIV infection. Women who experience violence may have difficulty negotiating safe sexual practices, including the use of condoms, which increases their risk of contracting HIV. In addition, fear of violence may deter women from seeking HIV testing, treatment, and support, perpetuating the cycle of violence and silence and limiting their access to critical and essential healthcare resources.

Violence against women in Guatemala is endemic and can be described as a shadow pandemic. The country has one of the world's highest rates of femicide: the intentional murder of women because they are women.

"Addressing the intersection of HIV and violence against women requires comprehensive efforts that include education, empowerment, and dismantling gender-based power imbalances," says Irene Izquieta, UNAIDS Advisor on Rights and Gender for Guatemala, Honduras, and Nicaragua. 

A new report by UNAIDS demonstrates the critical role communities play, and how underfunding and harmful barriers are holding back their lifesaving work and obstructing the end of AIDS.

LONDON/GENEVA, 28 November 2023—As World AIDS Day (1 December) approaches, UNAIDS is urging governments across the world to unleash the power of grassroots communities across the world to lead the fight to end AIDS. A new report launched today by UNAIDS, Let Communities Lead, shows that AIDS can be ended as a public health threat by 2030, but only if communities on the frontlines get the full support they need from governments and donors.

“Communities across the world have shown that they are ready, willing and able to lead the way. But they need the barriers obstructing their work to be pulled down, and they need to be properly resourced,” said Winnie Byanyima, Executive Director of UNAIDS. “Too often, communities are treated by decision-makers as problems to be managed, instead of being recognised and supported as leaders. Communities are not in the way, they light the way to the end of AIDS.”

The report, launched in London during a World AIDS Day event organized by the civil society organization STOPAIDS, shows how communities have been the driving force for progress.

Community advocacy from the streets to the courtrooms to parliaments has secured groundbreaking changes in policy. Communities’ campaigning helped open up access to generic HIV medicines, leading to sharp, sustained reductions in the cost of treatment from US$ 25 000 per person per year in 1995 to less than US$ 70 in many countries most affected by HIV today.

Let Communities Lead shows that investing in community-led HIV programmes delivers transformational benefits. It sets out how programmes delivered by community-based organizations in Nigeria were associated with a 64% increase in access to HIV treatment, a doubling of the likelihood of HIV prevention service utilization, and a four-fold increase in consistent condom use among people at risk of HIV. It also notes how, among sex workers reached by a package of peer-based services in the United Republic of Tanzania, the HIV incidence rate was reduced to below half (5% vs 10.4%).

“We are the vehicle for change that can end systematic injustices that continue to fuel HIV transmission. We have seen groundbreaking developments with U=U, improved access to medicines, and have made great strides in decriminalisation," said Robbie Lawlor, Co-Founder of Access to Medicines Ireland. “Yet, we are expected to move mountains without being financially supported. We are supposed to fight for a more equitable world and are tasked with dismantling stigma yet are side-lined in crucial discussions. We are at a tipping point. Communities can no longer be relegated to the periphery. The time for leadership is now.”

The report highlights how communities are at the forefront of innovation. In Windhoek, Namibia, a self-funded project by the youth Empowerment Group is using e-bikes to deliver HIV medicines, food and adherence support to young people who often cannot attend clinics due to their schooling hours. In China, community organizations developed smartphone apps that link people to self-testing which contributed to a more than four-fold increase in HIV tests across the country from 2009 to 2020.

The report reveals how communities are also holding service providers to account. In South Africa five community networks of people living with HIV inspected 400 sites across 29 districts and conducted more than 33 000 interviews with people living with HIV. In the Free State province, these findings led provincial health officials to implement new appointment protocols to reduce clinic wait times and three- and six-month dispensing of antiretroviral medicines.

“I am extremely concerned about the exclusion from health services of key populations like the LGBT+ community,” said Andrew Mitchell, Minister of State for Development and Africa. “The UK champions the rights of such communities, and we will continue to protect them, working closely with our partners in civil society. I thank UNAIDS for keeping us focused on the inequities driving the pandemic and I look forward to working with our partners to champion the voice of people living with HIV and end AIDS as a public health threat by 2030.”

Despite the clear evidence of community-led impact, community-led responses are unrecognized, under-resourced and in some places even under attack. Crackdowns on civil society and on the human rights of marginalized communities are obstructing communities from providing HIV prevention and treatment services. Underfunding of community-led initiatives is leaving them struggling to continue operating and holding them back from expansion. If these obstacles are removed, community-led organizations can add even greater impetus to end AIDS.

In the 2021 Political Declaration on ending AIDS, United Nations member states recognized the critical role communities play in HIV service delivery, particularly to people most at risk of HIV. However, whereas in 2012, when over 31% of HIV funding was channelled through civil society organizations, ten years later, in 2021, only 20% of funding for HIV was available—an unprecedented backsliding in commitments which has cost and is continuing to cost lives.

“At this time, community-led action is the most important countermeasure in the AIDS response,” said Solange Baptiste, Executive Director of the International Treatment Preparedness Coalition. “Yet, shockingly, it isn’t a cornerstone of global plans, agendas, strategies, or financing mechanisms for improving pandemic preparedness and health for all. It is time to change that.”

Every minute, a life is lost to AIDS. Every week, 4000 girls and young women become infected with HIV, and out of the 39 million people living with HIV, 9.2 million do not have access to lifesaving treatment. There is a Path that Ends AIDS and AIDS can be ended by 2030, but only if communities lead.

UNAIDS is calling for: Communities’ leadership roles to be made core in all HIV plans and programmes; Communities’ leadership roles to be fully and reliably funded; And for barriers to communities’ leadership roles to be removed.

The report features nine guest essays from community leaders, in which they share their experience on the achievements they have secured, the barriers they face, and what the world needs to end AIDS as a public health threat.

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.

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

Reverend Godson Dogbéda Téyi LAWSON KPAVUVU, Presiding Bishop of the Methodist Church of Togo

UNAIDS speaks to Reverend Godson about his work on HIV and about some of the challenges he is facing

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

I had been studying abroad and when I came back in 1992I found that members of my community were dying. But people weren’t talking about what was causing it, they were giving it nick names. It was of course AIDS. During a pastoral meeting I spoke with the Bishop who told me, ‘young man, this thing is a sin, you can’t talk about it openly here, the community won’t accept it’.  

This was until two or three years later when some of our colleagues from the church became sick and were dying of AIDS. I went back to the bishop and said now we have to talk about HIV. So, I created a small group and I joined up with the association of people living with HIV in Lomé – it was a safe space where people living with HIV could speak openly.

“Young man this thing is a sin, you can’t talk about it openly here, the community won’t accept it.”

We began to advocate with the government, working with the association and with churches and religious leaders in the country. But theologically, HIV was still spoken about as a sin, so if theologically the narrative isn’t correct, it will damage the whole process. So we corrected the narrative to make it clear that HIV is a virus, not a sin. This was the starting point.

“HIV is a virus, not a sin - this was the starting point.”

From then we created small teams within the communities to support people living with HIV and especially to support the families. To break down the stigma we had to start with the families and then the communities. We published books for academics so they could use them to teach, and we trained the young pastors.

Your work with key populations is well known – how did this come about?

I realized the importance of working with key populations when my uncle died in 2000. He was a gay man who contracted and died of AIDS.  I drew on my personal experience with my own family to start working with key populations.

“My uncle died in 2000. He was a gay man who contracted and died of AIDS.”

Today the government has put in place a framework to ensure that everyone living with HIV has access to treatment, but there is still a lot of stigma and discrimination. The loudest voices who have been speaking out are women, the mothers who are saying these are our children, how can we discriminate against our own children. So, we have engaged them in our efforts to break down the stigma around HIV and around key populations.

How has your work changed today?

Treatment is there, Togo has a plan for treatment and treatment is free of charge. But a real issue is adherence and how people can maintain their treatment within the communities amidst the ongoing stigma. We are training mentors and supporting volunteers to encourage people to stay on treatment.  It’s how best to support people in their families and within their communities.

“Togo has a plan for treatment and treatment is free of charge. But a real issue is adherence”

The human and social dynamics around HIV in Africa are complex. We have three generations now of children who are living with HIV, many who have been orphaned because of epidemic and having to explain to them that their parents loved them and didn’t want to pass on the virus, this can be hard. I have had experience with young people who have attempted to take their own lives because it’s too much for them, and we are there, the church is there to support them.

“I have had experience with young people who have attempted to take their own lives because it’s too much for them”

We are due to end AIDS among children in Africa by 2025 but to do this we are facing many challenges, not just access to testing and treatment, it’s about poverty, local contexts, social conflicts, military coups and migration. But if you put paediatric HIV at the top and give faith leaders the opportunity to organize women’s desks and children’s activities around that we can start educating children and young people about HIV, how to prevent it and they can have their own language to communicate among themselves.

I’m asking my colleagues from the religious communities to come to the forefront of the fight against AIDS and to integrate HIV into their messages especially around ending AIDS among children in Africa.