1 December 2019

I believe in communities.

Communities make change happen.

Communities are the best hope for ending AIDS because communities have fought against HIV right from the beginning!

As the epidemic raged through our countries, cities, villages, women held communities together and bore the higher burden of care for their families.

For far too long we have taken their volunteerism for granted.

In the face of adversity, communities of gay men, sex workers and people who use drugs have organized themselves to claim their right to health as equal citizens. 

So, we know that communities have proved their worth. There is no debate there.

Without communities, 24 million people would not be on treatment today. Without communities led by women living with and affected by HIV, we would not be close to ending new HIV infections among children, raising orphans and caring for the sick. 

Twenty-five years ago, a Burundi woman called Jeanne was the first person to disclose that she was living with HIV. Today, Jeanne is holding leaders accountable and fighting for the right to health care.

Pioneers like Jeanne have been joined by younger leaders, like 20-year-old Yana, who was born with HIV in Ukraine. Yana founded Teenergizer, a group bringing together young people across eastern Europe. In a world where power resides with old men, she wants her peers to have a voice and a choice.

Consider Fiacre. He lives in Central African Republic, displaced by conflict along with thousands of others. Fiacre cycles to a clinic, crossing barriers and checkpoints to collect antiretroviral medicines for him and members of a group he belongs to. Without this support, each person would have to make the dangerous journey on their own. Simply amazing.

As you can see, communities make the difference all over the world.

However, the way communities are being taken for granted has to change.

On World AIDS Day, UNAIDS salutes the achievements of activists and communities in the struggle against HIV. We remember and we honour all those whom we have lost along the way. Activists challenged the silence and brought life-saving services to their communities. But the countless contributions by women and many others can never replace the responsibility of governments.

Let me remind you, governments committed to at least 30% of HIV services being community-led. 

They also agreed that 6% of all HIV funding go to community mobilization, promoting human rights and changing harmful laws that act as barriers to ending AIDS.

Let’s be clear, defending human rights and challenging discrimination, criminalization and stigma is risky work today.

So, we call on governments to open a space so that activists can do the work they do best.

With communities in the lead and governments living up to their promises, we will end AIDS.

Winnie Byanyima

Executive Director of UNAIDS

Under-Secretary-General of the United Nations

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.

Zemio is a city cut off from the world. In this remote area of south-eastern Central African Republic, few convoys pass and supplies are difficult to come by. Infrastructure barely exists and illegal checkpoints manned by armed men litter the roads.

Owing to conflict, more than 40 000 people are displaced in the area, and at least 30 000 people have been forced to flee to neighbouring South Sudan and the Democratic Republic of the Congo.

According to the government, the Haut-Mbomou region, where Zemio is located, has the highest HIV prevalence in the Central African Republic: at 12%, more than triple the rest of the country. 

But community antiretroviral therapy groups, or CAGs, set up in 2016 by Medecins Sans Frontières, are helping people living with HIV to support and help each other.

In Zemio, the CAGs represent hope in a forgotten conflict.

“Is it safe to do their work?” Renaè Green and Donique Givans go silent for several seconds. “I am still scared,” says Ms Green, the Associate Director for Policy and Advocacy at TransWave Jamaica. “I don’t like to go to certain spaces. If anyone wants to participate in one of our campaigns, we explain the risks. You don’t know what kind of backlash you might experience.”

Ms Givans, who is the organization’s community liaison officer, knows this all too well. She wasn’t up front about her gender identity with her father when she began becoming more visible in her advocacy work.

“He doesn’t want anything to do with me now,” she says, her voice shaking a little. “He told me to go and not to come back to his house. So, we do let people know they might have difficulties.”

TransWave was formed in 2015 following a lesbian, gay, bisexual and transgender health and gender-based violence training, conducted by WE-Change and supported by the Jamaica Forum for Lesbians, All-Sexuals and Gays and Jamaica AIDS Support for Life.

TransWave’s Executive Director, Neish McLean, is the only transgender man at the helm of a Caribbean transgender organization. Recently Mr McLean discussed his personal journey publicly, exploring issues ranging from the distinction between gender identity and sexuality to top surgery. This is largely unchartered territory in a Caribbean nation famed for its social conservatism.

“For a long time, people actually said that transgender people didn’t exist in Jamaica because people could not put a face to them or identify anyone who was transgender. Now we have so many people who identify. It has helped in terms of explaining who transgender people are,” explains Ms Green. 

In addition to increasing transgender visibility, TransWave advocates on a wide range of subjects that affect the community—the lack of access to transgender-oriented housing, education and employment, for example, as well as initiatives to reduce poverty and violence. HIV is a huge challenge. A 2018 Integrated Biological and Behavioral Surveillance Survey conducted by the University of San Francisco found that 51% of Jamaican transwomen tested were living with HIV.

TransWave advocates strongly for all members of the community to access health care.

“Many are aware that they are HIV-positive but don’t seek treatment. They are just waiting to die. People cannot stomach not being able to live their lives as their real selves and won’t put themselves through the distress of going to a clinic,” says Ms Green. “It becomes difficult because all eyes are on you and you are putting yourself at risk for people to attack or hurt you,” explains Ms Green.

In July, UNAIDS Jamaica supported TransWave’s Transgender Health and Wellness Conference. The event helped launch a toolkit on how health-care providers can provide holistic, non-discriminatory services, along with dialogue around the rights and inclusion of transgender people. The organization has also met some employers to gauge the degree of acceptance for the inclusion of transgender workers.

Ms Givens paints a mixed picture of what life is like for transgender people in Jamaica. 

“It is very difficult, but people try to align themselves with society’s gender norms. They might do a little makeup to feel comfortable, but they don’t go heavy. Some workplaces allow people to be themselves, but you don’t have transwomen wearing skirts,” she said.

Public transportation is often challenging. When TransWave books a taxi, for example, they are never sure if the driver will be tolerant. Renting an apartment can be a landmine. Lower-priced housing often means living in a less safe area. Landlords and neighbours can be judgemental.

At the extreme, homelessness remains a major problem, with some young transgender people being thrown out of their homes before they even become teenagers. This is often the starting point for a frightening array of vulnerabilities, including a lack of schooling, poor job prospects and bad health, with some turning to sex work.

Asked about their hopes for the future, Ms Givans and Ms Green list adequate funding for TransWave and being able to further their education. Ms Green adds that she would like to emigrate.

“But not everybody wants to leave Jamaica and not everybody should leave,” she says pointedly. “That’s why we are working so hard. So that we can get to a point where everybody is accepted.”

Home to 5 million people living with HIV, western and central Africa is not on track to ending AIDS by 2030. Every day, more than 760 people become newly infected with HIV in the region and only 2.6 million of the 5 million people living with HIV are on treatment.

Insufficient political will, frail health systems and weak support for community organizations―as well as barriers such as HIV-related criminalization―are the most significant obstacles to progress. A regional acceleration plan aims to put the region on track to reaching the target of tripling the number of people on antiretroviral therapy by 2020 and achieving epidemic control. While progress has been made, that progress is not coming fast enough. Children are of particular concern―only 28% of under-15-year-olds living with HIV in the region have access to antiretroviral therapy.

“We need policies and programmes that focus on people not diseases, ensuring that communities are fully engaged from the outset in designing, shaping and delivering health strategies,” said Gunilla Carlsson, UNAIDS Executive Director, a.i., speaking at the Global Fund to Fight AIDS, Tuberculosis and Malaria Sixth Replenishment Conference, taking place in Lyon, France, on 9 and 10 October.

There are many examples of how investing in communities can make a difference. “The response is faster and more efficient if it is run by those who are most concerned,” said Jeanne Gapiya, who has been living with HIV for many years and runs the ANSS nongovernmental organization in Burundi.

Community-led HIV testing and prevention is effective, particularly for marginalized groups. “Most of the people tested by communities were never reached before and this shows how community organizations are unique and essential,” said Aliou Sylla, Director of Coalition Plus Afrique.

Reducing the number of new HIV infections among children and ensuring that women have access to the services they need remains one of the biggest challenges in the region. Networks of mothers living with HIV who support each other to stay healthy and help their child to be born HIV-free have been shown to be an effective way of improving the health of both mothers and children.

“Our community-based approach works. In the sites where we work we have reached the target of zero new HIV infections among children and all children who come to us are on treatment,” said Rejane Zio from Sidaction.

Financing remains a concern and although total resources for the AIDS response have increased, and HIV remains the single largest focus area for development assistance for health, domestic investments account for only 38% of total HIV resources available in western and central Africa, compared to 57% worldwide. Greater national investments reinforced by stronger support from international donors are needed to Fast-Track the regional response. Bintou Dembele, Executive Director of ARCAD-Sida, Mali, said, “We have community expertise, but we lack the funds to meet the need.”

Support is growing for community-based approaches in the region. Recognizing the importance of community-led work, Expertise France and the Civil Society Institute for Health and HIV in Western and Central Africa announced a new partnership on 9 October. “The institute brings together 81 organizations from 19 countries aiming to ensure better political influence at the global and country levels and to galvanize civil society expertise in programme delivery. This partnership is a recognition of our essential contribution,” said Daouda Diouf, Director of Enda Sante and head of the steering committee of the institute. “The situation in western and central Africa remains a priority. It is clear that community-based approaches are agile and appropriate for responding to pandemics,” said Jeremie Pellet from Expertise France.

Shifting to a people-centred approach has been at the core of reforms in the region. A growing regional resolve to accelerate the response and to strengthen community-led approaches that have been proved to work provides hope for the future of the HIV epidemic in western and central Africa.

A dozen young people from nine different countries in Latin America came together in July at the 10th International AIDS Society Conference on HIV Science in Mexico City, Mexico, to develop new youth-friendly communications strategy related to HIV prevention for young gay men and other young men having sex with men.

Although the 12 had never met face-to-face before, they had held several virtual meetings to pave the way for the conference, organized by the Latin American HIV-Positive Youth Network (J+LAC), with support from the Pan American Health Organization/World Health Organization (PAHO/WHO), UNAIDS and UNICEF.   

Every year in Latin America, an estimated 100 000 people become newly infected with HIV—a number that has not changed over the past decade. In 2018, young people between the ages of 15 and 24 years accounted for one fifth of all new HIV infections in the region. Young gay men and other men who have sex with men, sex workers, transgender people and injecting drug users are particularly affected.

“We need to remind the world that we cannot talk about prevention without young people and make the world realize that we are involved and concerned,” said Kenia Donaire, a Honduran who was born with HIV.

UNAIDS, PAHO/WHO and UNICEF are strong advocates for the involvement of young people not only as beneficiaries of services but also as partners and leaders in the design, development, implementation and monitoring and evaluation of policies and programmes.

“Too often, young people are not at the decision-making tables creating the programmes they need to protect themselves from HIV. You have the potential to set an example on how young people can lead, advocate, create demand and deliver tailored services to end an epidemic that is the second leading cause of death among adolescents. We need new ways to communicate, generate demand and link young people at higher risk of HIV to services,” said Shannon Hader, UNAIDS Deputy Executive Director, Programme.

Young people living with HIV in Latin America have been working together to design an HIV prevention communications strategy for young gay men and other young men having sex with men in the region. In advance of travelling to the conference, they worked together to map existing communications campaigns and initiatives on combination prevention of HIV and other sexually transmitted infections and discussed how to translate complex scientific content into effective key messages for their peers.

“Young men who have sex with men and other vulnerable youth need access to HIV prevention information in a way that makes sense to them,” said Maeve de Mello, regional advisor on HIV prevention at PAHO.  “We are very pleased to support this talented group of young people. Their personal experience and voices will better prepare us to address this public health concern in a way that adults alone cannot.”

At the conference they shared their ideas with leading health and communications experts and discussed digital strategies to reach young people with compelling messages on HIV prevention and ending stigma and discrimination.

“Learning about the latest advances and successful experiences in the response to HIV, while being able to learn what goes on from the other side of the screen from digital experts such as YouTube was a really enriching experience,” said Horacio Barreda, one of J+LAC coordinators. “We need a strategy that focuses on the needs and affinities of young gay people, who live their lives in the virtual and off-line worlds.”

“This is a successful start of an important journey through which we believe we will reach Latin American youth in all its diversity.”

The group now plans to bring their strategy and advice to key stakeholders in the response to HIV, including to ministries of health, United Nations agencies, and other partners.