People living with HIV

Nilsa Hernandez, 62, used to work as an informal greengrocer in Venezuela to help increase her family income and provide for her children, grandchildren and great-grandchildren. As a person living with HIV for 16 years, Nilsa had managed to reduce her viral load to undetectable until everything changed suddenly when the political-economic crisis took hold in Venezuela. Health services were severely affected and people living with HIV gradually lost access to regular care, treatment and medication.

"I went about two years without access to treatment. My body started to feel the consequences and I realized that I needed to do something urgently. It was a live or die situation, and I decided to live!", remembers Nilsa.

Nilsa crossed the border and emigrated to Brazil, where HIV treatment is available to everyone through the public health system. It took her a year to prepare for the journey. In 2018, she arrived in Roraima, the Brazilian state bordering Venezuela, with her partner, who also lived with HIV, and her 12-year-old grandson.

They ended up in the streets after suffering all kinds of discrimination and violence. Thanks to the support of people she met, she finally managed to rent a small house in the outskirts of Rio Branco, the capital of Roraima, and resume her HIV treatment. As soon as she recovered immunity, she had no doubt: it was time to become an activist and create Valientes por la Vida (Brave for Life), a voluntary initiative to support other Venezuelans living with HIV who, like her, arrived in Brazil with scarce resources and little information.

"We are brave because it takes a lot of courage to leave your country, often with only the things we had to hand, in search of treatment and in search of life."

Today, as a humanitarian activist, Nilsa has mobilized a network of other Valientes who joined her to spread the word about the arrival of new Venezuelan migrants in search of HIV treatment.

The COVID-19 pandemic has severely affected this process, especially when the borders between Brazil and Venezuela were closed in March 2020. “The closure made it very difficult for my compatriots to access HIV treatment that could save their lives. With the reopening of the border, we are now putting these services back on track."

According to the 2020 Annual Report on Epidemiology issued by the state of Roraima’s medical authority, in the years 2018 and 2019, a combined total of 1,137 cases of HIV/AIDS were reported in the state. Among the foreign population, migrants from Venezuela represent the most significant number of the combined HIV/AIDS cases for the same period: 383 people.

Just like Nilsa, many of the Venezuelan people living with HIV migrate to Brazil in search of access to HIV treatment that they are no longer able to have in many parts of the country. In this context, UNAIDS established a partnership with UNESCO in December 2020 in a joint, collaborative and intersectoral strategy to grant Venezuelan migrants access to health education, prevention, and health promotion, and to support the responses of Roraima to HIV and COVID-19.

Claudia Velasquez, UNAIDS Representative and Country Director in Brazil, explains that the proposal is to reduce prejudice, stigma and discrimination related to migrants and refugees, and more vulnerable populations, such as sex workers and LGBTQIA+ population, youth and indigenous peoples.

"We want to promote the empowerment of vulnerable populations through the dissemination of information about HIV and the rights of people living with HIV”, says Ms. Velasquez. “Nilsa Hernandez is an example of a humanitarian activist. And people like her, who are Brave for Life, show the enormous impact that civil society's mobilization has on supporting and welcoming people living with HIV and on the efforts to face stigma and discrimination, which enhance the inequalities that prevent us from ending the AIDS pandemic by 2030."

For the future, Nilsa's dream is for Valientes por la Vida to become an international organization, with volunteers dedicated to supporting people living with HIV to have access to treatment and a healthy life. "I also want people to stop seeing us as HIV positive. This creates a horrible stigma that weighs on us all. We are not HIV positive. We are brave and impatient because we are in a hurry to live like everyone else."

GENEVA, 11 August 2021—UNAIDS welcomes the announcement by Chile that it recognizes international responsibility for violating the rights of a woman living with HIV who was sterilized without her consent almost 20 years ago. The government has agreed a friendly settlement with the woman, Francisca, that includes the payment of reparations for the violation of her human rights. It has also committed to ending forced sterilization and to guaranteeing reproductive rights as human rights without discrimination.

Francisca delivered a healthy baby boy in 2002 and was then sterilized without her consent by the doctor who carried out her Caesarean section, making the decision that a woman living with HIV should not be able to have children. The friendly agreement announced this week comes after more than a decade’s litigation by the woman and her legal teams.

“This settlement is a significant moment for women around the world who have been fighting for reproductive justice for decades. Coercive sterilization of women living with HIV is a violation of women’s most fundamental human rights,” said UNAIDS Executive Director, Winnie Byanyima. “Unfortunately, this practice is still happening in many countries and efforts to stop it and bring justice to more women must be stepped up.”

This settlement comes after years of efforts before the Inter-American Commission on Human Rights (IACHR) after an earlier complaint in the Chilean justice system was unsuccessful. The case was litigated by the Chilean organization, Vivo Positivo, and the international human rights organization, Center for Reproductive Rights.

UNAIDS submitted an amicus brief to inform the IAHCR the standards that governments must uphold to address the HIV stigma and discrimination that impact women living with HIV. These include the obligation to respect, protect and fulfil women’s autonomy in decision making on matters related to their sexual and reproductive lives, their right to physical integrity and their right to be free from violence, including from violence by health personnel.

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.

"I was a drug user for 16 years – I know how society pressures you and puts you in a tight corner… Some people can’t get a passport, some don't have a place to live, some don't take antiretroviral drugs because they continue using drugs... It is impossible to break out of this terrible circle without outside help,” recalls Evgeny Yuldashev, a social worker and HIV peer counsellor in Kyrgyzstan. 

Currently, he provides HIV prevention and care services to vulnerable groups of people, including people who use drugs.

"There are former prisoners living with HIV who lost their rights to housing while they were serving their sentences”, says Mr Yuldashev. “Some are migrant workers living with HIV who were deported and now have no idea where to start again. It is not easy for sex workers who are constantly subjected to illegal detention. They all need HIV services and they all need support in getting their rights back.”

This coercive legal environment and the violence experienced by key populations impacts the HIV epidemic in Kyrgyzstan because fear stops people from seeking and adhering to HIV prevention, treatment, care and support services.

Ainura Osmonalieva is a lawyer and deputy director of Adilet, the largest human rights and legal services organization in Kyrgyzstan. She says that people are not always ready to defend their rights even when they are told it’s possible.

"We have been providing legal services to key populations free of charge for over fifteen years. Still, there are cases when people from communities come to us, we prepare documents to submit to the court, but at some stage, the person disappears or tells us that he is afraid of the consequences and refuses to take further steps. They may experience tremendous pressure if they decide to go to trial. The main reason in my opinion is the high level of stigma and discrimination that exists in society. "

But when all players are ready to fight till the very end, there can be dramatic change.

With the help of Adilet's lawyers, Kyrgyz' activists managed to remove the barrier to parenting for people living with HIV in the country, which had been in effect for many years. As a result, the Country's Constitutional Court excluded HIV from the list of diseases that prevent people from adopting children or becoming guardians or foster parents.

It took lawyers four years and hundreds of hours of analytical work on the conventions, agreements and declarations ratified by Kyrgyzstan for the Constitutional Court to finally decide the issue.

"We collected the evidence base, then a plaintiff came forward and we were able to file a lawsuit on their behalf," says Ms Osmonalieva.

In July 2021, adolescents living with HIV in Kyrgyzstan who were infected in state medical institutions between 2006—2009 filed lawsuits against the state for compensation for moral damage. Families who had battled for justice for more than a decade were given hope when lawyers won a case and a child was awarded $23,000 in compensation.

The Public Foundation "Positive Dialogue" is another non-governmental human rights organization in the south of the country that provides free legal assistance to vulnerable groups.

"We work closely with the Republican AIDS Center and the Osh Regional AIDS Center to monitor the situation regarding patients' rights, including patients who are in prisons, and conduct assessments of the legal environment to understand what legal norms can be applied," says lawyer Arsen Ambaryan.

According to Mr Ambaryan, all players - state bodies, nongovernmental organizations, and human rights defenders must work as a team to eliminate the legal barriers that still exist in the country.

New global targets for 2025 put a special emphasis on creating the enabling environment for ending AIDS, identified in the 10-10-10 targets: that less than 10% of countries have punitive legal and policy conditions that prohibit or restrict access to services; less than 10% of key populations and people living with HIV face discrimination and stigma; and less than 10% of women, girls, people living with HIV and key populations face violence and gender inequality.

“Kyrgyzstan has a lot of work ahead,” says UNAIDS country director, Meerim Sarybaeva. “It will require consistency from all sides and UNAIDS stands ready to provide any support required in this important area."

Video: Evgeny Yuldashev, a social worker and HIV peer counsellor in Kyrgyzstan, answers questions on how we can protect people who inject drugs

“We are demanding that you step up and finally do your part,” said Yana Panfilova, a young female activist from Ukraine who is living with HIV, at the United Nations High-Level Meeting on AIDS in June 2021.

A leader of the regional adolescent-led movement Teenergizer, she emphasized the vulnerability of young people to HIV and the need to provide care and support to adolescents living with HIV and she called on world leaders to keep young people at the forefront of the AIDS response.

“If we are going to make real change, these four things must become a reality: comprehensive sexuality education in all schools, in all countries; psychosocial support and peer support for every adolescent with HIV and young key populations; community-led HIV services immediately as the reality, not the exception; and an HIV vaccine and a functional cure,” Ms Panfilova added.

All these recommendations are critical in eastern Europe and central Asia, which is facing the world’s fastest growing HIV epidemic. At end of 2020, there were 60 000 young people aged 15–24 years living with HIV in the region. Many young people remain unaware of their HIV status, and late HIV diagnosis remains a significant challenge in the region.

There are multiple barriers and obstacles in almost all countries in eastern Europe and central Asia for adolescents and young people to access HIV services and care. In many countries there is an absence of adolescent-centred HIV testing and counselling, there are requirements for parental consent for HIV services, there is a lack of access to modern contraceptives and there are confidentiality issues and stigma and discrimination. Harmful norms, taboos related to sexual and reproductive health, inequalities, gender-based violence, COVID-19-related obstacles and mental health problems are further barriers to access to HIV services.

Although significant progress has been achieved over the past 30 years in providing adolescents and young people in eastern Europe and central Asia with access to sexual education and other services, the level of knowledge about HIV prevention among people aged 15–24 years in the region remains low—as low as less than 3% in Tajikistan.

Different approaches have been used by civil society and community-led organizations to reach young people who are vulnerable to HIV. For example, the Dance4life project in Belarus, Kyrgyzstan, Kazakhstan, the Republic of Moldova, the Russian Federation and Ukraine reaches vulnerable young people with the Journey4Life Programme (J4L). J4L helps adolescents aged 14–18 years develop healthy interpersonal relationships that are free from violence and coercion and based on respect for gender equality and teaches them how to maintain their sexual and reproductive health, focusing on the prevention of HIV, unplanned pregnancy and sexually transmitted infections. It aims to reach 1400 young people by the end of 2021 in Kazakhstan and Kyrgyzstan, with support from UNAIDS and the United Nations Educational, Scientific and Cultural Organization.

A recent survey among adolescents run by Teenergizer showed that the availability of HIV treatment for adolescents is not enough to keep them alive. Treatment interruption is a significant reason why adolescents continue to die in the region. According to the survey, HIV-related fears, psychological vulnerability, treatment fatigue and stigma are significant risk factors for treatment interruption among adolescents. The survey noted that they need support from their peers, communities and doctors, and they often need professional psychological help. 

In her United Nations High-Level Meeting on AIDS speech, Yana Panfilova remembered Diana, who recently died of an AIDS-related illness. “This year, I was angry when we lost Diana. She was only 19, born with HIV. But she had pills that were impossible to take, no mental health support and no confidentiality. Like millions of people with HIV, she was killed by inequalities. Millions of people with HIV may have HIV pills, but they live in a world where their families and their societies do not accept them for who they are.”

Svetlana Izambayeva, who organizes It’s simple!  summer camps for children and adolescents living with HIV in the region, explained that adolescents living with HIV are often socially isolated and lonely—they are scared to talk about their diagnosis and fear for their future. The camp’s attendees receive psychological care and support, create networks and support others. 

“We need more political leadership, more data on adolescents and young people, more programmes to address the gaps and more funds for the youth response. But here in the region we already have a growing movement of adolescent and young leaders which we must nurture, fund and further support,” said Lena Kiryushina, the UNAIDS Youth Officer for eastern Europe and central Asia.

Like the rest of the world, COVID-19 has hit Côte d’Ivoire hard. As soon as the first cases of COVID-19 were confirmed in March 2020, a national response plan was developed by the government. Unfortunately, the restrictive measures to protect the population had an impact on the use of health services, including those related to HIV, threatening the fragile retention in care of people living with HIV. Pregnant and lactating women living with HIV and their children, one of the most vulnerable groups, have been particularly affected, and maintaining their access to services and care was essential to avoid undoing years of effort.

The United Nations Development Programme (UNDP) and UNAIDS joined forces to help retain 333 pregnant and lactating women living with HIV in antenatal, maternity and paediatric services in Abidjan. The project will provide, over nine months, 1000 food kits and 1000 hygiene kits to help beneficiaries with food assistance and help them protect themselves against COVID-19.  A food kit contains 20 kg of rice, six litres of oil, 10 pieces of soap and four boxes of children’s flour, and a hygiene kit contains two bottles of hydroalcoholic gel, two bottles of liquid soap and 50 surgical masks. The project also aimed to ensure that the women have access to the comprehensive package of services developed under Côte d’Ivoire’s prevention of mother-to-child transmission of HIV (vertical transmission) programme, to ensure that all exposed children of the project’s beneficiaries are screened early and have access to appropriate care and to document and share good practices.

One of the beneficiaries, Ouattara Maimouna, who has been living with HIV for five years and is a breastfeeding mother of three children, said, “Doctor, this gift was incredibly important to us. It has helped us a lot! This stock of food helps me feed my family. I cannot thank you enough, because I ran out of ways to sustain the small business that used to support my family.”

“About 700 hygiene kits and 700 food kits have been distributed since the project started in December 2020. The United States President’s Emergency Plan for AIDS Relief’s (PEPFAR) implementing partners unanimously indicate that the kits have contributed to the loyalty of pregnant and breastfeeding women to prevention of vertical transmission of HIV and paediatric care services, as well as to self-support groups,” said Brigitte Quenum, the UNAIDS Country Director for Côte d’Ivoire.

At this stage of implementation, some lessons learned are already emerging. The project has been very well received by the beneficiaries because of their vulnerability, which has been aggravated by the COVID-19 crisis. The support has helped to increase their compliance with appointments at the various prenatal consultations, to improve the continuity of treatment and viral load testing for pregnant and breastfeeding women and to strengthen the link between women living with HIV and the staff providing both clinical and community care. The project also emphasizes the importance of taking into account the social component in the care of women in prevention of vertical transmission of HIV services.

The distribution of food and hygiene kits will continue until the end of 2021. Pregnant and breastfeeding women living with HIV have become more vulnerable in the midst of the response to COVID-19 and assistance strategies that respond to their specific sensitivities must be designed. “The mobilization of UNDP, UNAIDS, PEPFAR implementing partners and their nongovernmental organization partners has ensured a coalition of support for advocacy and the scaling up of outreach efforts to vulnerable populations,” added Ms Quenum. “While this one-time initiative is useful, efforts should be made to integrate other activities, such as nutrition promotion and the integration of a social component in the care of women living with HIV in vertical transmission services and other care sites.”

An HIV-sensitive and inclusive social protection assessment will start in the coming months in collaboration with the key ministries involved. Mobilization of funds for social aspects related to women living with HIV and advocacy for sustainable support measures will be required.

Since the United Nations High-Level Meeting on Ending AIDS in 2016, the young key populations’ movement and its visibility have grown considerably in Asia and the Pacific. Through their engagement with national and regional networks of key populations, more and more young people have taken up space in decision-making processes and in mobilizing resources to support local and national organizations. However, despite those important efforts, more needs to be done to meaningfully engage young key populations in the HIV response as leaders, beneficiaries and partners.

UNAIDS data from 2019 alarmingly shows that 27% of all new HIV infections in Asia and the Pacific were among young people. Young gay men and other men who have sex with men accounted for 52% of all new HIV infections among young people. Overall, 99% of new HIV infections among young people were among young key populations and their partners.

A side event held on the sidelines of the United Nations High-Level Meeting on AIDS, held in New York, United States of America, and online from 8 to 10 June, looked at the progress made and challenges in the HIV response and emphasized the critical role of young people in leading change and promoting successful and innovative approaches to the HIV response.

The speakers and panellists stressed that significant barriers exist for young key populations to access HIV testing, treatment and prevention services and routine sexual and reproductive health and rights services in the region. Those barriers include a limited availability of differentiated HIV services for young key populations, stigma and discrimination, punitive laws and other legal barriers that leave young key populations on the margins and out of reach of HIV services.  The COVID-19 pandemic continues to widen existing inequalities and service gaps, but thanks to the engagement of community-led organizations, populations at higher risk of HIV, including young key populations, were able to access essential HIV and health services.

The speakers and panellists noted that young people are showing us the way to revolutionize HIV prevention and increase the uptake of HIV services by implementing new strategies and innovations that cater to the specific needs of young people. During the COVID-19 pandemic, organizations led by and serving young people, such as the Lighthouse Social Enterprise in Viet Nam and the Human Touch Foundation in India, have been at the forefront of the HIV response, providing HIV services in partnership with the local government to the communities that need them the most.

The team at the Human Touch Foundation, a community-based organization in Goa, India, that provides care and support to adolescents living with HIV has, since the start of the COVID-19 pandemic, organized volunteers to deliver antiretroviral therapy to people’s doorsteps. Moreover, the organization played a critical role in getting the local government to waver public transport costs to ensure that people living with HIV had access to treatment. With the increased anxiety and depression brought on by the COVID-19 pandemic, the Human Touch Foundation offered psychosocial support services to adolescents living with HIV, both in the form of online counselling and in-person consultations.

Similarly, the Lighthouse Social Enterprise, a lesbian, gay, bisexual, transgender and intersex (LGBTI) organization led by young people based in Hanoi, Viet Nam, has been instrumental in providing differentiated service delivery to young key populations during the COVID-19 pandemic. Some of the services it provides at its clinic include HIV counselling and testing, post-exposure prophylaxis, pre-exposure prophylaxis and antiretroviral therapy. The Lighthouse Social Enterprise also established a referral service to ensure that young key populations are linked with other health services, such as sexually transmitted infection testing and treatment, mental health support and harm reduction services. What makes the Lighthouse Social Enterprise unique is that the clinic is entirely run by young people. Health-care workers are given training by the Lighthouse Social Enterprise team on LGBTI and key population needs and issues in order to ensure that services are youth-friendly and free from stigma and discrimination. Last year, the Lighthouse Social Enterprise provided services to more than 3000 members of young key populations in Viet Nam.

The side event was an opportunity for different organizations led by and serving young people working on HIV-related issues to share experiences and define common strategies to keep HIV on the political agenda at the national and municipal levels.

Communities living with and affected by HIV, including communities of key populations, are the backbone of the HIV response. They have campaigned for their rights, expanded the evidence base for effective action against HIV, supported the design and implementation of programmes and enhanced the reach and quality of health services. They ensured that the greater involvement of people living with HIV principle became an organizing norm for HIV programmes and that rights-based approaches were widely adopted.

A panel, Putting People and Communities at the Centre of the Response to AIDS, held on the sidelines of the United Nations High-Level Meeting on AIDS on 9 June, saw a high-level discussion on the opportunities and challenges for moving towards the global AIDS targets and realizing the political commitments and policy adaptations needed to support community-led responses as the world moves towards ending AIDS by 2030, and does so in the context of COVID-19.

The panel discussed supporting key population-led, women-led and other community-led responses, new priorities emerging from the community-led response to COVID-19 and fair payment for the community workforce, in particular for women living with HIV and women from key and vulnerable populations.

The panellists heard that more than three decades of experience has clearly shown that communities are at the centre of efforts to end AIDS as a public health threat, but their significant contribution is too often set aside or made more difficult by politicians or public health officials who have little or no knowledge of the lives and experiences of the people they are charged to serve.

They also heard that the response to the COVID-19 pandemic has further underscored the importance of communities in navigating difficult and rapidly changing environments and in reaching affected communities with essential services, such as COVID-19 testing and vaccination and HIV prevention, testing and treatment and other health and social services.

During their discussions, all panellists stressed that communities can deliver when there is an enabling legal environment, operating space for civil society organizations and funding and capacity-building.

Caribbean partners from governments, civil society and the development community met on 7 June to discuss regional priorities for the 2021 United Nations High-Level Meeting on AIDS and its resulting political declaration. The virtual Caribbean Caucus was hosted by the Pan Caribbean Partnership against HIV/AIDS (PANCAP) and moderated by the Caribbean Community (CARICOM) Assistant Secretary-General, Douglas Slater.

The PANCAP Director, Rosmond Adams, noted that the Caribbean has made significant progress in key aspects of the HIV response. Eight countries and territories have been validated by the World Health Organization for eliminating vertical HIV and syphilis transmission. And between 2010 and 2020, AIDS-related deaths in the region fell by half (51%).

But to get on track to end AIDS by 2030, he said Caribbean countries must step up the pace around prevention, testing, treatment, care and ending stigma and discrimination. By 2020, 82% of people living with HIV in the region were diagnosed. Two thirds (67%) of all people living with HIV were on treatment and 59% were virally suppressed.

While new HIV infections have fallen by 28% since 2010, the rate of decline is too slow. Overall, members of key population communities and their partners accounted for 60% of new HIV infections in 2020. Around one third of new HIV infections were among young people aged 15–24 years.

Speaking on behalf of the Caribbean Regional Network of People Living with HIV (CRN+), Diana Weekes noted that key structural barriers continue to block access to HIV prevention, treatment and care services. These include “stigma and discrimination … lack of privacy, breach of confidentiality and limited redress” when people’s rights have been violated. She noted that no country in the region has adopted the CARICOM model antidiscrimination legislation, which was developed almost a decade ago. CRN+ called for greater emphasis on policy and legislative changes as well as community-led responses to address these structural barriers.

Ivan Cruickshank, the Executive Director of the Caribbean Vulnerable Communities Coalition, pointed to regional data that show that HIV disproportionately affects key populations, including gay men and other men who have sex with men, transgender people, sex workers and people who use drugs.

“According to the latest UNAIDS report, nations with progressive laws and policies, as well as robust and inclusive health systems, have had the best HIV outcomes. We must therefore create inclusive societies in which people are confident in their ability to seek medical treatment and exercise their social and economic rights. We must go beyond declarations, to remove laws that continue to criminalize communities and limit young people’s access to sexual and reproductive health and rights,” Mr Cruickshank said.

The Guyana Health Minister and Caribbean representative on the UNAIDS Programme Coordinating Board, Frank Anthony, reaffirmed the region’s commitment to the HIV response, saying that “governments in the region stand ready to do their part in ending AIDS by 2030.”

He pointed to longstanding challenges in the region, such as “removing the legal obstacles that foster discriminatory practices” and “prevention sustainability.” But he also emphasized the new threat posed by COVID-19, noting that “finite financial resources had to be reprogrammed to meet these urgent demands.” He called for increased vaccine equity and a review of plans to transition countries in the region away from international HIV funding.  

“We must use the platform available to us at this United Nations high-level meeting to ensure that we highlight our vulnerabilities to the HIV epidemic and the COVID-19 pandemic,” he said.

During discussions, civil society participants also emphasized the profound negative impact of COVID-19 containment measures on lives and livelihoods. They said there was an additional need for solutions to provide nutrition, mental health and financial support to people living with HIV and members of key population communities.

The Director of the UNAIDS New York Liaison Office, César Núñez, noted that in the response to both HIV and COVID-19, the role of communities is clear.

“The response must include a key role for civil society at the table when frameworks are being put together and implemented,” he said.

Mr Núñez ended by calling for CARICOM’s support in securing an ambitious, action-oriented and laser-focused political declaration.

HIV outcomes rely on far more than the availability of services or treatment.

According to the 2020 Jamaica People Living with HIV Stigma Index, more than one third (38%) of respondents delayed HIV testing due to fears about how others would respond if they received a positive diagnosis. And 30% were slow to start treatment because of concerns that people might learn about their status.

Many of those fears are founded.

Almost half of the study’s respondents (48%) had experienced stigma or discrimination related to their HIV status. Members of key population communities reported even higher rates of prejudice and worse mental health than other people living with HIV.

“More needs to be done to get those living with HIV, and communities impacted by HIV, to live in a country and society where they are accepted and appreciated. That will also make their health outcomes better,” said Jumoke Patrick, the Executive Director of the Jamaica Network of Seropositives.

To accelerate progress towards that goal, in 2020 Jamaica became one of the first countries to join the Global Partnership for Action to Eliminate all Forms of HIV-Related Stigma and Discrimination. The initiative combines the power of governments, civil society, donors, academia and the United Nations. It reaches beyond the health sector to address ignorance and bias in education, the workplace, the justice system, families and communities.

On 4 June, the Jamaica Partnership to Eliminate HIV-Related Stigma and Discrimination launched its first annual report, Enabling environment and human rights.

The State Minister in the Health and Wellness Ministry and Chair of the Partnership, Juliet Cuthbert Flynn, reiterated the government’s commitment to addressing the social and legal issues that are barriers to an effective HIV response. She called for political leadership across party lines to recognize their role in helping to create an enabling environment.

“This is an imperative as we strive to allow every individual—regardless of their occupation, socioeconomic status, sexual orientation, gender identity, age, health status, disability and other status—to enjoy their human rights,” Ms Cuthbert Flynn said.

“We strongly believe that AIDS in Jamaica is not over, but it can be,” said the UNAIDS Country Director for Jamaica, Manoela Manova,

She noted that the new UNAIDS report, Global commitments, local action, showed that while dozens of countries had achieved the 2020 targets, many, including Jamaica, are entirely off track.

“HIV remains driven by inequality. The countries with progressive laws and policies as well as strong and inclusive community and health systems have the best outcomes. New HIV infections and AIDS-related deaths reduce faster. That is what we would like to achieve for Jamaica,” Ms Manova said.

Jaevion Nelson, a UNAIDS consultant, detailed the achievements of stakeholders in the national HIV response in Jamaica. A national human rights public education campaign was led by the National Family Planning Board. Sensitization exercises were conducted with police and correctional officers, health-care workers and faith leaders and congregants. People living with HIV received legal support, with several securing resolutions such as being reinstated in their jobs and receiving settlement costs. A National Transgender Health Strategy was launched, and nongovernmental organizations collaborated to develop model antidiscrimination legislation. 

The next steps for the initiative include strengthening monitoring, evaluation and learning for its human rights agenda, increasing the engagement of legislators and creating a more sustainable framework for sensitizing health-care workers, law enforcement officers and other duty-bearers.

The UNAIDS Deputy Executive Director, Programme, Shannon Hader, delivered the feature address at the virtual event. “Societal enablers and HIV outcomes are linked,” she said. “We will only end AIDS if we strive to respect, protect and promote the rights of everyone, everywhere. It is the evidence-based thing to do.” 

At the United Nations High-Level Meeting on AIDS, which will take place from 8 to 10 June, Member States will adopt a new political declaration to bring the HIV response back on track. After the uneven progress made in the HIV response since the 2016 United Nations High-Level Meeting on Ending AIDS, this year’s high-level meeting will be the springboard for a decade of action to reduce inequalities and root out the social determinants that fuel the HIV epidemic.

In order to find out more about civil society’s aspirations and hopes for the high-level meeting and political declaration, UNAIDS talked to two civil society representatives, both of whom are living with HIV. Jacqueline Rocha Côrtes (JRC) is from the National Movement of Women Living with HIV/AIDS (MNCP/Brazil), the Latin American and the Caribbean Movement of Positive Women (MLCM+) and the National Institute of Reassigned Women (INAMUR/Brazil). Andrew Spieldenner (AS) is the Executive Director of Mpact. Both are members of the Multistakeholder Task Force to the HLM and were involved in drafting the 2021 high-level meeting civil society declaration, in which civil society organizations urge Member States to focus efforts and resources where they are most needed and to adopt a political declaration that explicitly recognizes who is most at risk of HIV and acknowledges why this is so, to commit to fully fund and support effective HIV responses and to hold Member States accountable for their actions.

What is the purpose of the civil society declaration you released ahead of the high-level meeting?

JRC: The civil society declaration has several purposes. First of all, to bring together the main inputs given by civil society globally on the desired content of the 2021 political declaration on AIDS. Secondly, the civil society declaration serves as a tool to mobilize community efforts locally and regionally and to harmonize and sharpen our positions in order to build a stronger community position on our demands worldwide.

AS: The civil society declaration released ahead of the high-level meeting is a clear statement of the values, concerns and needs of our communities. Where Member States might be more concerned with politics, civil society continues to elevate and centre those most impacted by HIV—the same populations most often marginalized by governments through punitive laws and policies. As civil society, we want to ensure that Member States understand where we stand, in the hope that they support our work and communities in the development of the political declaration.

What are the major asks from civil society to Member States?

JRC: The major asks from the civil society declaration, from my personal perspective, are to show and remind Member States how strong we are and of our ability to mobilize and guide what is needed to end AIDS. It is an opportunity to show that we, the communities, are alive and attentive, even more so during times like this, where the COVID-19 pandemic has had such a negative impact on the response to AIDS. It is also a call to international and multilateral organizations.

AS: We want Member States to recognize the disproportionate impact of HIV on sex workers, people who use drugs, transgender people and gay and bisexual men and to centre the needs of key populations in the HIV response. We want Member States to support the delivery of necessary HIV interventions, such as comprehensive sexuality education, harm reduction in all its forms and HIV prevention and treatment. We want Member States to protect sexual and reproductive health and rights. We want Member States to be flexible with the Trade-Related Aspects of Intellectual Property Rights (TRIPS) with HIV technologies and to fully fund the HIV response.

What are the expectations of communities and civil society organizations for the upcoming high-level meeting and new political declaration?

JRC: In the political declaration, we expect to see a minimum standard of progressive broad language that includes everyone in order to make it clear that, when we refer to the response to AIDS, we are referring to human rights, the flexibility of trade agreements, the financing of the AIDS response, the community-led responses, the reduction and elimination of gender-based violence. We expect the political declaration to include firm commitments to fulfil the many goals established in the 2016 political declaration and in other political declaration that have not yet been met, as well as the most recent priorities established by the UNAIDS Global AIDS Strategy 2021–2026, agreed by many countries, which calls for the elimination of inequalities to end AIDS by 2030.

We also hope that conveniently politically correct technical language won’t serve as a veil to cover particular interests, leaving aside issues such as sexual and human diversity, sexual health and reproductive rights and the reduction and gradual elimination of punitive laws that further stigmatize people and punish citizens, who are often imprisoned or killed simply because they exist as they are.

AS: As civil society and communities, we expect Member States to support the Global AIDS Strategy 2021–2026. We understand that some Member States will be against the language describing key populations, as well as against key HIV interventions, including harm reduction, comprehensive sexuality education and TRIPS flexibilities. We hope that Member States can seek compromise to embrace and support what’s necessary to move forward in the HIV response.

Some Member States are still reticent to advance the agenda when it comes to key populations, drug use and the criminalization of sex work. What would be your message to them?

JRC: My message to them is that whether they accept it or not, humanity will not be linear like some of their political and economic projects and even social projects that try to dictate the course of human lives, over which the authorities have no governability or rights. In the same way that United Nations Member States refer to national sovereignty on whether to adopt or not certain measures, people have an inalienable autonomy to decide what is best for their lives and how they want to live.

It is imperative that Member States recognize the existence and rights of key populations.

As a reassigned transsexual woman living with HIV for 27 years, I cannot help but state that if we want to end inequalities we will necessarily have to approach and embrace human diversity.

AS: After 40 years of HIV, the disproportionate burden of HIV remains on key populations, including people who use drugs, sex workers, gay and bisexual men and transgender people. We cannot end the HIV epidemic if we do not centre the needs of key populations, including the greater involvement of people living with HIV. If Member States continue to ignore our needs, marginalize our communities and legislate against us, then the HIV epidemic will continue unabated, no matter the advances in HIV technologies.

Once the political declaration has been adopted, what will be the role of civil society in making it a reality on the ground?

JRC: We will do what we have always done—we will advocate and influence politics. We will monitor and mobilize, fight, carry out community-led work and provide community responses, build and act with solidarity, respect the internal dynamics of the various sectors, including the governments, but act on our rights and demand that our governmental authorities to do their work and comply with their commitments and duties.

And we count on UNAIDS, one of our most valuable partners, and on other United Nations agencies.

AS: The global key population networks have been advocates for community-led responses and accountability mechanisms. With the support of multilateral and philanthropic funding, we will continue to support grass-roots local and regional efforts. Unfortunately, with shrinking civil society space and funding, this will be a challenge. We need multilateral and philanthropic support in order to continue this role.