Men and boys

Michael Onyango rises before dawn in his Nairobi apartment and catches a train eight hours east to Kilifi, a coastal town north of Mombasa. Resorts populate Kilifi’s sandy beaches and narrow wooden boats dot the water. Onyango heads inland to meet with the Kilifi County health management team, before dashing to an assembly of peer outreach workers from across the districts of Kaloleni, Malindi and Kilifi North.

Onyango runs the Movement of Men Against HIV in Kenya (MMAHK), spearheading a community-led monitoring initiative in the region to address the high numbers of men and boys who lack access to HIV services. In Kenya, only 65 percent of the men and boys over 15 years of age who are living with HIV are on antiretroviral therapy, compared to 80 percent of women and girls. The trend is mirrored globally: in 2024, the WHO and UNAIDS released data that men lagged on progress in achieving the 95-95-95 targets. Worldwide just 83 percent of men living with HIV know their status; 72 percent are on treatment and only 67 percent are virally suppressed.

MMAHK, in collaboration with the Masculinity Institute (MAIN), the International Network of Religious Leaders (INERELA+Kenya) and the UNAIDS Kenya country office, came together to tackle these service gaps in Kilifi County, which surrounds the town of the same name. The area, home to around 1.5 million residents, extends westward from the Indian Ocean and supports livelihoods through fisheries, factories, cashew nut mills, and farming.

In Kilifi, peer data collectors have identified that health facilities need to change their opening days and hours to accommodate the work and school day.

Community organizers are also working to challenge harmful prejudices that assert that men visiting a health facility or seeking an HIV test are “weak”.

As they rapidly roll-out peer support groups to challenge these beliefs, Onyango has had flashbacks to the pandemic’s earlier phases, when in the 1990s he worked as a counselor in a Nairobi hospital. HIV treatment was not yet available. “Many men I met who found out they were positive would resign from their jobs, go to their rural homes, sell their property, and wait to die,” Onyango said.

In 2001, Onyango and others started MMAHK to create a safe space for men to talk about their health needs. MMAHK also ran community testing, workplace outreach and targeted advocacy with religious and cultural leaders. As grassroots initiatives challenged harmful gender norms, Onyango saw social stigma and self-stigma among men decrease across Kenya. But the past few years have seen a resurgence of harmful norms around masculinity.

Onyango shares that the shift in funding away from many community initiatives, which were seen as harder to measure than biomedical interventions, has hampered community engagement efforts. Both are needed, he says. For example, although HIV treatment and voluntary male circumcision are now available in Kenya, cultural factors prevent some men from accessing these services.

A regional strategy developed in 2022 by UNAIDS, WHO, UN Women and partners –“Male Engagement in HIV Testing, Treatment and Prevention in East and Southern Africa” – outlines four key approaches: Improve access to health for men and boys and decrease vulnerability; prevent HIV among men and boys; diagnose more men and boys living with HIV; and increase the proportion of men and boys accessing and adhering to antiretroviral therapy.

“Tackling harmful masculinity also has a ripple effect,” reflects Lycias Zembe, a UNAIDS advisor in Geneva. “Harmful gender norms affect everyone, and changing these norms creates a better environment for women and girls and for men and boys.”

Community initiatives like MMAHK remain key. To challenge gender norms, MMAHK positions service access as courageous, and educates men that discussing emotions is a sign of strength. At 63, Onyango shows no signs of slowing down: “We’re going to keep addressing self-stigma and figure out how to help men access the services that they need to stay healthy,” he said. “We don’t have any other option.”

In 2020, a gay Thai man living with HIV sparked controversy with a Facebook post. He was on antiretroviral therapy and had gotten lab tests to check the level of virus in his blood. Since his viral load was undetectable, he wrote, he was going to stop using condoms.

The public responded with a mix of contempt and disbelief. How could he? So selfish! So reckless! The resulting debate spilled from social media onto national radio and TV.

“There was a huge backlash,” remembered Dr Nittaya Phanuphak, the Executive Director of the Institute of HIV Research and Innovation (IHRI). She was telling the story from IHRI’s sunlit offices to teams from Botswana, Ghana, Ivory Coast, Jamaica, Mozambique, South Africa and Zambia. They’d come to Bangkok as part of a learning exchange coordinated by the Global Partnership for Action to Eliminate all Forms of HIV-related Stigma and Discrimination.

Dr Nittaya said that she and her father, Professor Praphan Phanuphak, thought it was their duty to contribute to the public discourse. While the man’s approach might have been unconventional, the science behind his statement was sound.

They would know. Professor Praphan diagnosed Thailand’s first HIV case in 1985 and dedicated his life to HIV research, service delivery and advocacy. He co-founded the Thai Red Cross AIDS Research Centre which in 2014 conducted cutting-edge research as part of the Opposites Attract Study. Done in Australia, Brazil and Thailand, that study tracked couples in which one person was HIV-negative and the other was living with HIV but had achieved an undetectable viral load through successful HIV treatment.  It confirmed that after two years of unprotected sex, there were no cases of HIV transmission between more than 300 couples. 

“It’s a scientific fact,” Dr Nittaya said. “For me, I felt like we really needed to do something. We cannot just wait 50 years for this knowledge to gradually seep into Thai society.”

The “knowledge” to which she refers is the concept of undetectable = untransmittable, or U=U for short. Last year the World Health Organization further endorsed the principle, stressing that when a person’s viral load is undetectable there is zero chance of sexual transmission.

“Before, HIV treatment just meant longevity,” said Pan (not his real name), a person living with HIV. “But with U=U, now it is love without fear.”

Within three to six months a person who takes their HIV treatment as prescribed and receives viral load monitoring can confirm that they have achieved an undetectable viral load. This removes the self-stigma associated with having an “infectious” disease. For Thai HIV response stakeholders, this concept can also transform the public’s attitudes about people living with HIV, making it easier for them to live full, happy lives.

“If social perceptions can be brought in line with the reality of HIV treatment, we can remove the stigma around getting an HIV test or diagnosis,” said Eamonn Murphy, Regional Director of UNAIDS Asia Pacific and Eastern Europe Central Asia. “The more supportive the society, the more people we successfully treat and the fewer new infections.”

But for the U=U strategy to be fully utilized, work must be done to dispel myths and bolster confidence in science.

According to UNAIDS Country Director for Thailand, Dr Patchara Benjarattanaporn, a key step in the national process was bringing decision-makers together with relevant stakeholders, including voices from communities.

“They considered both global and local evidence,” she explained. “Now there is consensus about the science. U=U also conveys the message ‘you=you’, affirming that all individuals are equal and that people are more than their HIV status. It emphasizes the importance of ensuring people are fully informed about their options and respecting their right to make choices about their sexual health depending on their realities.”

At the opening ceremony of the eight-country learning exchange, Dr Niti Haetanurak, Department of Disease Control Deputy Director, noted that the U=U concept is a key element of Thailand’s “all of society” strategy to address the prejudice and rights violations people living with HIV face. Thailand has a National Costed Action Plan to Eliminate all forms of HIV-related Stigma and Discrimination. The Ministry of Public Health and Sub-National Committee on AIDS Rights Promotion and Protection under National AIDS Committee coordinate the effort. Community organizations play a leading role.

During the exchange the country teams visited the Service Workers in Group (SWING) Foundation which serves sex workers and IHRI’s Tangerine Clinic which primarily serves transgender people. Both have come up with innovative approaches to ensure groups that usually find it challenging to receive healthcare at state-run facilities can get HIV and sexually transmitted infection (STI) testing and treatment in a friendly environment.

A key strategy is training members of those very communities to provide certain services themselves. They can even start clients on treatment for HIV and some other conditions the same day they are diagnosed. This approach makes it less likely for people to disappear into the shadows after diagnosis, with a high chance of infecting others and eventually becoming ill.

“This community-led health model can be applied to any health condition or population. But this does not really address stigma and discrimination. It just bypasses it by opening up alternative service delivery outlets for people who want to avoid negative experiences elsewhere,” Dr. Nittaya said.  “We need to address the heart of the stigma as well. That is why we are working on using U=U as a tool to explore how we can shift attitudes.”

The Bangkok Metropolitan Administration (BMA) is integrating this concept into its work in healthcare settings and the workplace. A masterplan is in the works. One branch of the strategy will tackle employers requiring HIV testing in the pre-employment phase or targeting employees they find out are living with HIV. Another aspect of the approach is the integration U=U into all levels of HIV service delivery and ongoing healthcare worker sensitization. All staff in clinics and hospitals are trained, not just nurses and doctors.

The work doesn’t stop there, though. Describing the Bangkok society as “open”, Dr Tavida Kamolvej, Deputy Governor of Bangkok, said that the whole of society was ready for deeper conversations about inclusion and HIV. But how could these approaches be applied in other countries and cities that are not quite as tolerant or accepting, she was asked.

“If you are confronted with beliefs that might not allow open conversations about HIV, sexuality and sex, you can strategically make it about health literacy, dignity and care for all people. I think this is soft enough to make people aware about health and wellbeing,” Dr Tavida advised.

Click here to learn more about the recent eight-country learning exchange to eliminate all forms of HIV-related stigma and discrimination.  

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.