People living with HIV

The humanitarian crisis in Haiti is exacerbating the vulnerability of people living with or affected by HIV, particularly women, girls, and key populations. The situation has deepened existing inequalities, and multiplied the risks faced by marginalised communities. In the face of this adversity, UNAIDS continues to work with partners to ensure that people living with or affected by HIV have access to life-saving HIV services, including treatment and prevention services.

For example, in the West Department, over 50,000 people are receiving antiretroviral treatment and are at high risk of disruption. HIV prevention and health care services also face disruption. The recent violence continues to leave thousands of families traumatized. Thousands of people now find themselves unsafe and exposed to all types of risks. Displaced people and vulnerable populations need emergency aid and safe, protected spaces.

"Communities already at risk of HIV in Haiti have been made even more vulnerable, and people living with HIV are facing greater challenges in accessing treatment and care", said UNAIDS Regional Director for Latin America and the Caribbean, Luisa Cabal. "Together with all the United Nations agencies, and with partners, UNAIDS is advocating for safe and unhindered humanitarian access, and the protection health facilities and health workers."

The situation in Haiti is dire, with over 5.5 million people in need of assistance, including more than three million children. The World Food Programme has noted that around 1.4 million Haitians are "one step away from famine." The UN Humanitarian Coordinator for Haiti has noted that the humanitarian response plan is only six percent funded. Less than half of the health facilities in Port-au-Prince are functioning at their average capacity, and there is a pressing need for safe blood products, anesthetics, and other essential medicines.

In the face of these challenges, UNAIDS and its Cosponsors, together with the United States President's Emergency Plan for AIDS Relief (PEPFAR), the Global Fund to Fight AIDS, Tuberculosis and Malaria, and the Observatory of Civil Society for HIV/TB/Malaria are supporting Haiti’s National AIDS Program.

UNAIDS has been working with the Ministry of Health and Population Unit for Management of Health Emergencies to support HIV treatment delivery. This support includes programmes to provide a broad package of support to affected communities. For example, together with the United Nations High Commissioner for Refugees (UNHCR) and in collaboration with the Organisation de Développement et de Lutte contre la Pauvreté (ODELPA), UNAIDS supports girls and women who are survivors of gender-based violence by training community leaders and granting empowerment funds for women and men's income-generating activities.

"We are working to ensure that people living with HIV have continuity of antiretroviral treatment as well as access to essential needs, especially including the most vulnerable people across the most affected areas," explains Christian Mouala, UNAIDS Country Director for Haiti. "UNAIDS remains committed to not let the humanitarian crisis disrupt the progress that has been made in the HIV response.  The United Nations stand together to support the people of Haiti."

One-third of people living with HIV in Asia and the Pacific are women. But their issues are often hidden.

Gender-based violence. Restricted economic opportunities. Child marriage. Underage pregnancy. Denial of property rights.

A UNAIDS-supported initiative by the International Community of Women Living with HIV Asia and Pacific (ICWAP) supports positive women’s organising. The Feminist School is a learning and consciousness raising programme that began in South Africa, and has been utilised in Asia-Pacific since 2016. The methodology, anchored in feminist principles, is specifically designed to enable women living with HIV to understand their personal experiences, locate them politically and develop strategies for community-driven advocacy. 

“Marching in the month of March is not enough to realize women’s rights,” insists ICWAP Regional Director, Sita Shahi. “We need to speak up on the issue of gender inequality in the HIV response and the need for increased investments in women and girls. Women and girls living with HIV are going through serious human rights violations that, in turn, undermine their right to health.”

The Feminist School brings together women living with HIV, women from key populations, and young women from across the region.  In the past two years, with support from UNAIDS, ICWAP has made adaptations to include modules on sexual and reproductive health and rights, movement building, leadership skills and the elimination of mother-to-child transmission (EMTCT).

“Feminist leadership training reveals the challenges faced by women living with HIV in the region. I have gained a lot of knowledge from the cross-country discussions and learned lessons about how women from different countries are breaking down human rights-related barriers, including stigma and discrimination,” said Salina from Malaysia.

Last year, a new module on the Global Fund processes was added.

“We recognized the importance of ensuring that interventions led by women living with HIV are included in Global Fund funding requests,” explained UNAIDS Asia Pacific Regional Adviser for Community-Led Responses, Michela Polesana.

UNAIDS supported a Global Fund Grant Cycle Seven (GC7) project focused on supporting the engagement of networks of women living with HIV in Cambodia, India, Thailand and Viet Nam in the current process. It found that organizations in these countries were at different stages of readiness and involvement. For example, India’s Positive Women Network (PWN+) was already participating in the process and benefitted from ICWAP’s technical support to strengthen their advocacy and organization.

Another UNAIDS-supported strategy ICWAP employed to bolster GC7 engagement was the facilitation of peer-to-peer growth by and for women living with HIV through the roll-out of an online Feminist School training. Through this initiative, country networks were supported in engaging in the Global Fund process and learned about its gender equality strategy, including the gender equality markers (GEM). They also received training to support them in their work to hold governments accountable.

The organization partnered with Ikatan Perempuan Positif Indonesia (IPPI), the Thai Positive Women’s Network, Viet Nam’s Women’s Network, the Association of Positive Women Advocates Inc (APWAI) from the Philippines, Women affected by HIV and AIDS (WABHA) from Papua New Guinea and an informal network of women living with HIV in Cambodia.

The groups identified priority issues for advocacy and recommendations for next steps and devised country-specific advocacy plans.

The advocates agreed on a set of three shared priorities. First, a seat for women living with HIV on each Country Coordinating Mechanism. Second, for positive women networks to reclaim antenatal care activities in prevention of mother-to-child transmission programmes. And finally, for capacity building for young positive women leaders.

Feminist school is helping women living with HIV to organize to secure their human rights. To protect women’s health it is vital to protect women’s rights. And to protect women’s rights it is vital to support women’s leadership.

“This is all about bridging the gap between outgoing leaders and an incoming, new generation,” Ms. Shahi said.

In an important decision of the Plenum of the Supreme Court on December 26, 2023, Tajikistan has marked a significant step towards decriminalization of HIV exposure and transmission in its pursuit of justice for people living with or affected by HIV.  

Imagine this: you’re a person living with HIV, and your household is facing financial hardship. You decide to run a small grocery business at home, keeping your status hidden. Despite accessing free HIV treatment, you cannot afford other essential health services. And when you need to buy medicine, you don't have enough for your children’s school supplies or nutritious meals.

Low incomes.

Unaffordable healthcare.

Employment insecurity due to HIV-related stigma and discrimination.

These realities create financial hurdles for the poor among people living with HIV and the key populations—gay men and other men who have sex with men, transgender women, sex workers and people who inject drugs.

In Cambodia, stakeholders are working to ensure that the social protection safety net specifically covers people living with, and at risk of contracting, HIV.

“People living with HIV do not only need medication, but also food. If we provide only the drugs they will not survive,” said  Tia Phalla, Deputy Director of Cambodia’s National AIDS Authority (NAA). He explained that nutrition support and other non-health related care are an integral part of the national policy for responding to HIV.

Cambodia is among the countries that are on-track to reach the 2025 Global AIDS Strategy testing and treatment targets. As of the end of 2022, an estimated 86% of people living with HIV in Cambodia were aware of their status. Impressively, more than 98% of diagnosed people were receiving treatment and 98% of those on treatment achieved a suppressed viral load last year.

The country hopes to further improve these results while enhancing the quality of life of people living with HIV.

“A key part of the strategy we have advocated for is to include HIV sensitivity in social protection schemes and programmes,” explained Patricia Ongpin, UNAIDS Country Director for Cambodia, Lao PDR and Malaysia. Individuals and families affected by HIV can now benefit from a range of programmes including cash transfer, food assistance, social health protection and scholarships.

Once a person living with HIV registers their household for an Equity Card, they are entitled to monthly stipends. The card also gives holders access to additional medical care. This frees individuals and families from having to choose between healthcare and expenses for other essentials such as education and food.

In 2019 Cambodia officially included people living with HIV in its IDPoor mechanism. This is a system to identify and register households living in poverty. This was followed by the HIV and Social Protection Assessment, conducted in 2020 by UNAIDS and the NAA.

“The assessment made it clear that promoting HIV-sensitive social protection could help reduce the risk of HIV, increase demand for HIV prevention services, and promote HIV testing and safe sexual behaviors, as well as adherence to treatment,” said Ms Ongpin.

To ensure a more inclusive approach for IDPoor registration there must be engagement from key stakeholders including government, local authorities, development partners, and civil society organizations.

With support from UNAIDS and UNDP, Cambodia’s Ministry of Planning launched a web-based system and mobile application for IDPoor registration in December 2022. This approach makes it easier for individuals living with HIV to register at their treatment centers. As of August this year, more than 13,600 people living with HIV have been enrolled.

By leveraging this technology-driven approach, people living with HIV feel confident revealing their HIV status and are empowered to access much-needed healthcare benefits with dignity and autonomy. The solution can also be used to register people from key population communities at risk of contracting HIV.

Community leadership is a key strategy for expanding the initiative’s reach.  The Joint Forum of Networks of People Living with HIV and key populations (DFoNPAM) coordinates with the Department of Planning at district level in order to help with IDPoor registration. 

One initiative specifically targeted female entertainment workers. A national registration campaign was co-organized by the Ministry of Planning, the Phnom Penh City Hall, and the NAA, with technical assistance from UNAIDS. Around five dozen workers registered during the two-day campaign, receiving Equity Cards for their households.

According to the UNAIDS Country Director, this inclusive approach is key to creating a better future for people living with HIV and key populations.

“To mobilize their participation and register them for Equity Cards, we need to understand the barriers. And to understand the barriers, we need to listen to their experiences, in their own words. By taking this step, people living with HIV and key populations can help shape the conversation and ensure that their voices are heard,” Ms Ongpin ended.

In the heart of the bustling Guatemala City, Juan used to face the daily grind of life with an unwavering spirit. He had been diagnosed with HIV several years ago and had learned to manage his health effectively. As a dedicated employee at a marketing firm, he poured creativity into every project he touched.

Life seemed to be on an upswing for him until an unexpected turn of events unfolded at the workplace. A colleague stumbled upon Juan's medical records and, in a breach of privacy, discovered his HIV status. Soon, whispers spread through the office, and Juan began to feel the cold stares and hushed conversations whenever he walked by. Ultimately, he was dismissed from his company for "restructuring reasons."

As the discrimination became more blatant, Juan decided it was time to take action. He sought advice from Líderes Profesionales, a network of lawyers specializing in discrimination cases for people living with HIV. With UNAIDS's support, this network is committed to fighting for justice and equality for marginalized communities.

Upon hearing Juan's story, the lawyers at Líderes Profesionales were appalled by the flagrant violation of privacy and the subsequent discrimination. They quickly assembled a legal team dedicated to ensuring justice for Juan. The lawyers explained the legal protections in place for individuals with HIV, emphasizing that workplace discrimination based on health status is a clear violation of the law.

Together with Juan, the legal team initiated a lawsuit against the firm. They filed a complaint citing violations of privacy, discrimination, and failure to provide a safe and inclusive work environment and asked for payment of benefits and compensation for unjustified dismissal.

Líderes Profesionales worked tirelessly to expose Juan's unjust treatment, seeking justice for him and advocating for broader change in workplace policies. They organized workshops to sensitize companies, urging them to implement comprehensive diversity and inclusion training and policy.

As of December 2023, the case is still ongoing. The legal team's goal is to seek compensation for Juan and foster an environment where such discrimination would not be tolerated in the future.

"Juan's experience and five other discrimination-related workplace cases this year inspire us to continue our advocacy work," says Julio Rodríguez, Director of Líderes Profesionales. "We redouble our efforts to support individuals facing discrimination, using each case as an opportunity to raise awareness and push for systemic change."

In Guatemala, 31,000 people are estimated to be living with HIV. HIV-related stigma and discrimination are still pervasive. According to the latest National Stigma Index (2017), 14% of people living with HIV reported losing their job or source of income due to their positive status for HIV, and 13% of people living with HIV reported being denied employment or opportunity to work because of HIV.

 "Having access to legal support really represented a turning point for Juan. Empowered by it, he is a more vocal advocate for HIV awareness and anti-discrimination efforts," says Marie Engel, UNAIDS Country Director for Guatemala, Honduras and Nicaragua. "Through his journey, Juan contributes to a more just and inclusive society for all." 

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.