Rachel Allen (not her real name), who lives in Kingston, Jamaica, was coming to terms with testing positive for HIV and trying to get on with her life. When she decided to go to nursing school, she was horrified to discover that the school required her to take an HIV test as part of the application process.

Jane Williams and Paul Brown (not their real names) were in love and wanted to start a family. But when health-care workers learned that Ms Williams was living with HIV, they expressed their disapproval. One nurse told her she shouldn’t have a child because of her status. One doctor called her “wicked”.

These are experiences that are all too common among people living with HIV, according to Jumoke Patrick, Executive Director of the Jamaica Network of Seropositives. The organization was set up in 2005 as a mechanism for people living with HIV to report rights violations. Now, the Jamaican Anti-Discrimination System (JADS) provides a system for the formal reporting of incidents and as well as a system of redress.

It’s an essential service, says Mr Patrick. He says that providing a channel for people to identify stigma and discrimination is a first step to allowing people living with HIV to access services and live full and productive lives.

“The fact that people are not accessing services has to do with stigma and discrimination,” Mr Patrick said. “That is why we have a fall-off in access to services. Stigma and discrimination is the main reason we are not where we are supposed to be in terms of getting people onto treatment. I have to know that when I disclose my status, you will not use it against me.”

People who have experienced prejudice in the health-care, education and employment sectors can report it to a JADS Redress Officer. Clients are often referred through a community facilitator in their health region, other civil society organizations or the Ministry of Health’s client complaint mechanism. Complainants fill out a form and are interviewed by one of the four redress officers in their district. A panel reviews each case and makes recommendations regarding an investigation. Agency and confidentiality are key. Some people opt out of seeing their complaints through, but those willing to go the distance have the benefit of an advocate.

“If you want redress you have to make a complaint, and you don’t have to be alone,” said Nadine Lawrence, a JADS Redress Officer. “It makes a lot of difference when you become empowered. You are able to get back into society and live a positive life.”

The most common cases are about treatment in health-care settings, breach of confidentiality and workplace harassment. Ms Lawrence has supported clients whose work colleagues disclosed their HIV status to their bosses. Others have had health workers from their community disclose their status.

What would she say to someone who has suffered an injustice but is reluctant to make a report? “Our organization exists so people who are HIV-positive can be more empowered. We sign a code of confidentiality. Trust the system,” she said. “Because it works.”

It worked for Ms Allen. JADS redress officers contacted the Ministry of Health to challenge the practice of requiring an HIV test to enrol in nursing school. The Ministry’s Legal Department intervened, sending a letter to the school advising it that the policy was illegal. The school’s board ultimately removed the HIV test requirement from its intake form.  

The system also worked for Ms Williams and Mr Brown, who received a written apology. In addition, their complaint initiated a training programme for medical staff about the sexual and reproductive health rights of people living with HIV.

Welsh rugby ace Gareth Thomas has spoken out about the urgent need to confront HIV-related stigma head on. Speaking at a special event during the 17th European AIDS Conference, which was held in Basel, Switzerland, from 6 to 9 November, Mr Thomas said that he wants to help create an environment that breaks stigma and where people can make educated decisions based on facts and be free to talk openly about HIV.

It was the first time that the former Welsh rugby captain had spoken in front of an audience about his decision to publicly disclose his HIV status. He talked of the overwhelming reaction and public support following his disclosure and the airing of the BBC documentary he made about living with HIV, which included footage of him completing the International Iron Man triathlon in Wales.

He spoke of his determination to show people that living with HIV can also mean living a long, fit and healthy life and that medical advances now mean that with access to effective treatment, people living with HIV cannot transmit the virus, advances that he said not enough people know about.

“I wanted to challenge stigma head on,” said Mr Thomas. “I wanted people to see that I was capable of swimming two and a half miles in the sea, cycling 112 miles and running a marathon with HIV. If I can do that, we can do anything. Since that day, I have received nothing but support and love.”

The event was moderated by the Director of the UNAIDS Eastern Europe and Central Asia Regional Support Team, Vinay Saldanha, and shone a spotlight on the power of partnerships to advance progress towards ending AIDS. The participants included a panel of international experts working in the field of community-led organizations, funding, international partnerships and activists living with HIV.

Advocate Bruce Richman, Founder and Executive Director of the Undetectable = Untransmittable (U = U) campaign, spoke about the importance of U = U to overcome the stigma experienced by people living with and affected by HIV and how the campaign has become a public movement to break down fear and misunderstanding around HIV.

“U = U sets people living with HIV free from the fear of transmission,” said Mr Richman. “We have been living with and dying from HIV stigma for over 35 years. U = U builds our partnership to end that stigma.”

Head of the sexual health charity the NAZ Project in London, United Kingdom, Marion Wadibia spoke of how partnerships can offer culturally specific sexual health services to people being left behind. “We need to integrate race into all our work,” she said.

She was joined by other panellists who talked about the importance of using bolder business unusual approaches to end AIDS in all communities and populations. Rageshri Dhairyawan, of Barts Health NHS Trust, London, cited Soul Sisters as an example of a partnership that provides support for women who are experiencing domestic abuse for sexual health services and HIV prevention. “Violence against women and girls is a leading driver of HIV transmission,” said Mr Dhairyawan.

The event, entitled Together We Can, was organized by Gilead Sciences. The conference joined together leading HIV experts, scientists, researchers, activists and communities of people living with HIV to discuss the latest progress towards ending AIDS in Europe.

The conference gave special attention to the growing HIV epidemics in eastern Europe and central Asia, examined progress towards the 90–90–90 targets, looked at cities and municipalities that have joined the Fast Track cities partnership, discussed models of care for people living with HIV as they get older and tacked eliminating HIV-related stigma and discrimination.

Webcasts, presentations and ePosters of the 17th European AIDS Conference are available on the European AIDS Clinical Society Resource Library for a period of three months.

In the early days of the HIV epidemic, pervasive stigma and discrimination against people at higher risk of HIV infection and people living with HIV nearly paralysed the AIDS response. HIV-related discrimination stops people accessing the HIV services they need to stay healthy and can affect incomes and livelihoods and a whole range of other aspects of people’s lives.

Discriminatory attitudes towards people living with HIV remain extremely high in far too many countries. Across 26 countries with recent population-based survey data, the percentage of people aged 15–49 years with discriminatory attitudes towards people living with HIV ranged from 16.9% in South Africa to 80% in Guinea.

Seven years after finding out that he was living with HIV, Jair Brandão was waiting for a medical appointment in a clinic in Recife, north-east Brazil, when a fellow patient informed him he could access psychosocial support at a nearby nongovernmental organization. Although it had taken him many years to accept his HIV status, he needed just three sessions of counselling to realize that he was meant to become an HIV activist.

“I was thrilled and scared at the same time, because I didn’t understand much about political spaces, nor about AIDS and health policies. I didn't know how to engage in political discussion,” recalls Mr Brandão, who two decades later is one of Brazil’s most influential HIV activists. “First, I had to accept myself as a person living with HIV, and this was one of the challenges. And then learn about the virus, take care of myself. Only after that did I start to learn about social and political issues.”

Mr Brandão says he believes that being an activist is natural for him. “Some people are born for that,” he says. “Being an activist is about being restless and not accepting injustices and violations of rights. I think I was born with this gift because I always led processes, even without knowing it was activism, and I was always concerned about helping and empowering others.”

After participating in three of the four United Nations high-level meetings on AIDS and in the 2018 high-level meeting on tuberculosis, Mr Brandão knows how difficult it is to engage in dialogues with other civil society peers and country representatives. His mother tongue is Portuguese, which is not an official United Nations language. “Speaking a foreign language is a major issue for us in Brazil, so we have to know at least Spanish. Very few activists know English fluently enough to be able to make interventions in these spaces.”

In July 2019, Mr Brandão was among the nongovernmental organization delegates at the High-Level Political Forum on Sustainable Development in New York, United States of America, representing RNP+ (the Network of People Living with HIV and AIDS) and his own nongovernmental organization, Gestos: Soropositividade, Comunicação e Gênero.

“It is essential for civil society to participate in the national implementation and monitoring processes of the 2030 Agenda for Sustainable Development effectively. We cannot achieve the Sustainable Development Goals without the full participation of civil society,” he says. “Defending the AIDS agenda also requires discussing other equally important and cross-cutting issues.”

Through his role as Project Adviser at Gestos and as a member of RNP+, Mr Brandão also leads the People Living with HIV Stigma Index 2.0 project in Brazil. With his peers at Gestos and other national networks of people living with HIV, and with the support of the United Nations Development Programme and UNAIDS, he helped train 30 people on interviewing techniques in seven Brazilian cities. In two months, they gathered information about HIV-related stigma and discrimination by conducting around 1800 interviews. The initial results will be released before the end of November.

“This process strengthened the activists who conducted the interviews because they could listen to and experience the stories that many people have been through and could not until now share with anyone,” he recalls. “We are in the fourth decade of the AIDS epidemic and still there is a lot of stigma and discrimination. The Stigma Index 2.0 is an instrument which gives us evidence of that in Brazil. We will be able to advocate for stigma-free, zero discrimination HIV policies and services.”

Mr Brandão says he believes in the power of collaboration and partnership to achieve social progress.

“The solidarity and spirit of community that helped create the AIDS movement must come back in our actions and hearts,” he says. “Rethinking strategies and creating new ways to bring about change is fundamental. Empowering new activists, especially young people, is critical. Young people need to be welcomed and open to receive information from experienced AIDS activists. It’s time to join forces, not to be divided.”

When Phillip Dzwonkiewicz won the Mr Gay England 2018 contest, he wanted to use his platform to talk about HIV. After years of struggling with his HIV-positive status, he no longer wanted to hide.

“I now live one life,” he said. “I live openly and it’s a massive weight off my shoulders.”

The next year, when competing in Mr Gay Europe 2018―he was runner up―he again used the platform to bring more visibility to HIV. “What still surprises me is how people tell me, “You don’t look like you have HIV”. It shows how misconceptions still exist,” he said.

As a dancer and performer, the Londoner-at-heart jumped at the opportunity to be the subject of a documentary. The film, Jus+ Like Me, features Mr Dzwonkiewicz coming to terms with his HIV status and how it affects his relationships with partners and his family. Since its launch, the film has won the European Cinematography Awards, the Queen Palm International film festival and was a semi-finalist at the London Independent Film Awards and ARFF Berlin International Awards.

“As a South African, I was aware of AIDS, but what struck me is how many people after seeing the film came forward to share their story about living with HIV,” Tom Falck, the Executive Producer of the film, said. He felt that Mr Dzwonkiewicz’s story had a lot of potential because his non-disclosure cost him a relationship; however, he respects the notion that some people choose not to reveal their HIV status. “Phil’s story is so inspirational, authentic and relatable,” he said.

The general response has been very positive, but the producers realized how stigma still exists.   “The hate messages on social media gave us 100% validation of what we sought to do,” Mr Falck said. “We cannot take a back seat; it’s important for all of us to fight the injustices and discrimination.”

In the film, Mr Dzwonkiewicz says that he hopes the documentary will help someone “just like me”. He and Mr Falck along with Director Samuel Douek started a campaign, #JUSTLIKEME, to keep the dialogue going and to raise further awareness. They hope it will encourage others to come forward and share their stories.

Mr Dzwonkiewicz explained that he has offered informal advice to friends for years but now is a peer support worker at Positive East, a nongovernmental organization focusing on HIV support services. “I want to do my little bit and help anyone any way I can,” he said. His peer work has opened his eyes to other communities.

“The demographics that I deal with are quite different than my social circle, but the journeys people describe resemble each other,” Mr Dzwonkiewicz said. He strongly believes in peer support and recalled how 56 Dean Street, the largest London sexual health National Health Service clinic, helped him along his entire journey from testing to treatment to understanding U = U (untransmittable = undetectable). Mr Dzwonkiewicz, like people who take antiretroviral therapy daily, can no longer transmit HIV because the virus is now undetectable in his blood.

“By being there with advice, support and counselling, I have gained such a quality of life,” he said, referring to 56 Dean Street.

“HIV doesn’t define me,” he said. “I am like any other person living my life to the fullest.”

Laws discriminate in many ways, but the criminalization of people is one of the most devastating forms of discrimination. Despite calls for reform and the commitments under the 2030 Agenda for Sustainable Development to remove discriminatory laws and reduce inequalities:

• Sixty-nine countries still criminalize same-sex sexual relationships.
• More than 100 countries criminalize drug use or the personal possession of drugs and 98 countries criminalize some form of sex work.
• One in five people in prison are there because of drug-related crimes and 80% of those are there for personal possession or use.
• Nineteen countries deport non-nationals on the grounds of their HIV status.

A high-level political forum is meeting in New York, United States of America, from 9 to 18 July to review the progress made against the commitments of Member States towards achieving the Sustainable Development Goals, including those on inequality and on peace, justice and strong institutions.

“As a judge, I have seen the effect that criminal law can have on communities. It takes people outside systems of protection, declares their actions or identity illegitimate, increases stigma and excludes them from any protections our judicial, social and economic systems may provide,” said Edwin Cameron, Justice of the Constitutional Court of South Africa.

Criminalization affects access to health services, housing, education, social protection and employment. The criminalization of same-sex sexual relationships, sex work or drug use prevents people from accessing health-care services, including HIV prevention, testing and treatment. Data show that gay men and other men who have sex with men are 28 times more at risk of HIV than the general population, people who inject drugs are 22 times more at risk and sex workers and transgender women are 13 times at risk. 

“To fully implement the Sustainable Development Goal agenda and make sure that no one is left behind, we need to ensure the laws are protecting people from discrimination and not pushing people into hiding from society,” said Lloyd Russell Moyle, United Kingdom Member of Parliament.

Groups that represent criminalized people are often barred from registering as nongovernmental organizations, and, for example, sex workers often can’t unionize. Propaganda laws may mean that information on, for example, HIV prevention can’t be disseminated.

“Ending AIDS and meeting the health-related Sustainable Development Goals targets will not be possible without addressing discrimination, violence and exclusion. We have an opportunity to harness the lessons from the AIDS movement and place rights and the meaningful participation of the most marginalized at the centre of the response,” said Luisa Cabal, Director for Human Rights and Gender, UNAIDS.

Criminalized groups often experience higher rates of violence than the general population. Victims of violence who are also criminalized often can’t report crimes against them to the police, and lawyers risk violence and other repercussions if they take up their cases.

“Discrimination against and criminalization of people living with HIV still continues to this day. And we are facing in Indonesia persistent stigma against and criminalizing of key populations. We will never end AIDS if we are not making their needs and rights a top priority for access to health care, protection against violence and realization of the right to health,” said Baby Rivona, from the Indonesian Positive Women Network.

Countries that decriminalize drug use and make harm reduction services available have seen reductions in new HIV infections. Evidence shows that decriminalizing sex work could avert between 33% and 46% of new HIV infections among sex workers and clients over 10 years. However, reductions in new HIV infections are not the only outcome—other outcomes include improvements in well-being and trust in law enforcement, reductions in violence and increased access to health-care and support services. Above all, however, decriminalization of people results in them no longer being seen as criminals and stigmatized by society.