Emihle Dlamini (not her real name) lost both her parents to AIDS-related illnesses when she was young, so she was raised by her grandmother. For years, Ms Dlamini didn’t know that she was born with HIV. She was given medicine, but was told it was for tuberculosis. South Africa had approximately 260 000 children living with HIV in 2018. Around one third lived in the KwaZulu-Natal province that Ms Dlamini lives in.

One day, Ms Dlamini attended a lesson at school run by the Community Care Project, where she learned about HIV and was offered an HIV test. The result came as a shock, “I was in total disbelief. I knew that I was not sexually active, but my family had never told me that I was HIV-positive,” she said.

Ms Dlamini experienced feelings of anger, confusion and sadness. “Why did my family not tell me? On many occasions, I stopped taking my “tuberculosis” treatment because I wondered why I was taking it for so many years,” she said.

Many people do not disclose their HIV status out of fear of the stigma and discrimination that, despite improvement, remains a real barrier to people seeking access to health services. Particularly affected are young women seeking protection from sexually transmitted infections, as well as HIV diagnosis and treatment. Every day in South Africa, 200 adolescent girls and young women aged 15–24 years are newly infected with HIV.

The Community Care Project has shown the importance of equal and free access to primary and secondary education as a gateway to other social and health services. Almost 163 000 children (0–14 years) living with HIV in South Africa were receiving antiretroviral therapy in 2018, but many are still missing out: an estimated 66 000 children did not even know their HIV-positive status.

The project is accustomed to breaking the silence surrounding HIV as well as managing and reducing its effects. Founded in 1999, it is a faith-based organization from KwaZulu-Natal that helps communities and families manage HIV and respond to stigma and discrimination. Since 2007, it has partnered with secondary schools to run awareness programmes and provide services that help schools and pupils understand and demystify HIV. It also provides care for orphans and other vulnerable children and their families.

The Community Care Project provided Ms Dlamini and her grandmother with counselling by an auxiliary social worker, to help them come to terms with the HIV diagnosis and to ensure that Ms Dlamini follows a sustained treatment programme. Ms Dlamini says she is now coping much better with her situation emotionally and mentally. She has a better understanding of HIV and sexual and reproductive health and is adhering to her medication. She feels that she can have a bright future.

“The Community Care Project taught me positive life skills. I learned how to cope with my HIV status, deal with stigma and help others to do the same,” she says. “One day I would like to be a motivational speaker and empower my peers at school with HIV information and how to live without judgement.”

Ronie Zuze believes in the power of information. Not only did it save them (Ronie uses the pronouns them/they/their), they are convinced that it can change lives and mindsets.

As the first born, their father was ecstatic when he was told he had a son, they recounted. “I was born with ambiguous genitalia, so doctors assigned the male gender,” Ronie said.

Ronie grew up as a boy until the age of 16 years.

“That’s when my body started developing some female features, despite the fact that I associated myself with being a boy,” the Zimbabwean said.

Ronie’s father panicked and sent Ronie to live in another town with his former wife.

“My father became very confused and fearful of the stigma and discrimination,” Ronie said, “so he sent me away.”

Ronie’s mother cautioned them—she immediately told they must now be a girl—to be careful around other people. “Sleepovers and contact sports were forbidden,” Ronie recalled.

Ronie believes the shame around who they were propelled them into a tailspin of denial and self-hate. “I attempted to kill myself two to three times and consumed excessive amounts of alcohol and drugs,” Ronie said.

They started seeking out help on the Internet, convinced there were others in the same situation, which led to a slew of information about what it meant to be an intersex person.

Intersex people are born with any of several variations in sex characteristics, including chromosomes, gonads or genitals that do not fit the typical definitions of male or female.

“The flood of information empowered me to understand who I was,” Ronie said. “I stopped being shameful of myself.”

Most of the people they engaged with were in Europe or North America. “If 1.7–2% of the global population is intersex, then I knew there must be more than just me in Africa,” Ronie said, brushing aside a dreadlock.

Ronie joined a local group for lesbian, gay, bisexual, transgender and intersex people and initially self-identified as a lesbian, but it did not feel right. Even the community didn’t understand intersex people, Ronie said. That’s when they decided to become a voice for people like them and started an organization, the Intersex Community of Zimbabwe, in 2018. Ronie now identifies as non-binary.

“As an activist, it means I empower other intersex people, I speak for those who cannot speak out, I encourage them to be proud and I provide information to them as well as support them,” Ronie said.

Ronie spends a lot of time with other intersex people and their immediate families. They pound the pavement telling parents to let nature take its course and not rush into assigning one gender to their intersex children. They believe an intersex person should decide for themselves when they are old enough to make that decision.

“I know there is a lot of stigma and misconceptions about intersex bodies, but parents need not panic,” Ronie said. “I want intersex people to know there is nothing to be ashamed of, so be proud.”

People who use drugs are often highly stigmatized and face high levels of discrimination. Women who use drugs, however, are doubly stigmatized and discriminated against—because of their drug use and because of their gender. They are also more exposed to gender-based violence and human rights violations that put them at risk of HIV and other infections.

Worldwide, few harm reduction programmes tailor their services to meet the needs of women, and gender-based discrimination may make them unwelcoming. HIV-related services also often don’t cater for the needs of women who use drugs.

As part of efforts to reach out to women who inject drugs, the India HIV/AIDS Alliance is working with the Punjab Government, through its Ministry of Health and Family Welfare at the Civil Hospital in Kapurthala, to develop a comprehensive harm reduction model for women who inject drugs in Punjab.

The hospital is developing a holistic and person-centred approach through a harm reduction clinic that provides services tailored to meet the needs of women. Employing a one-stop shop approach, HIV and harm reduction services are present in one facility. Clients are provided with a range of options, including opioid substitution therapy, needle–syringe programmes and naloxone, an effective treatment for opioid drug overdoses, which they can access free of charge at a time that suits them the best.

“When we didn’t have our women’s harm reduction centre, accessing opioid substitution therapy from other centres was a real challenge. The male users harassed us for sexual favours,” said Preeti Singh (not her real name), a client of the clinic.

The clinic works in partnership with local nongovernmental organizations to ensure that women who inject drugs can access other services, including counselling, HIV testing and sexual and reproductive health services. A menu of gender-sensitive services has been developed that draws on experience from India and other Asian countries. Women are service providers, community mobilizers and beneficiaries of the project.

“Initially my husband and my in-laws did not allow me to go access opioid substitution therapy from the women’s harm reduction centre. Now that I am on antiretroviral therapy and healthier, they know it works!” said Kiran Sharma (not her real name), a client of the clinic.

The project is also focusing on the creation and strengthening of community forums, organized by the State Drug User Forum together with the India HIV/AIDS Alliance. The forums aim to gather information from the perspective of the women themselves, to understand and respond to cross-cutting issues, including gender-based violence and stigma and discrimination, as well as to strengthen the delivery of HIV and harm-reduction services.

“Like my peers, I also went to the centre for seeking help with my withdrawals, and I was surprised to find many services for girls like us. What I like most was that there was help to take care of my child,” said Monica David (not her real name), a client of the clinic.

Started in February 2019, the project has already attained its target of reaching 150 women who inject drugs. The clinic has had a dramatic impact on the women’s lives, improving awareness about HIV, hepatitis C and tuberculosis prevention and testing and linking them to further treatment and care based on their need.

The project will be assessed later in the year and the evidence used for introducing and scaling up the model in India and elsewhere in Asia.

The UNAIDS Country Director for India, Bilali Camara, said that the project is timely. “We must continue to work collectively to close the gaps that continue to leave behind women who use drugs. Ending the AIDS epidemic as a public threat by 2030 depends on advancing a social justice and inclusion agenda that demands access to integrated health services free from discrimination, with the meaningful involvement of the communities,” he said.

When Tahmina Khaidarova was married it was in accordance with her family’s cultural traditions—her parents chose her cousin to be her husband. She rarely saw her husband, who worked in another country, returning home to Tajikistan only for short visits once a year. When her little daughter fell seriously ill and died, she hoped to get pregnant again to ease the pain of her loss. During a medical examination, she was diagnosed with HIV. Soon her husband died of an AIDS-related illness.

Today, Ms Khaidarova is the Director of the Tajikistan Network of Women Living with HIV (TNW Plus), which educates women on HIV, protects their rights and breaks the vicious cycle of stigma against women living with HIV. She overcame her self-stigma and became a leader in fighting for the rights of women living with HIV in Tajikistan.

Ms Khaidarova explained that women who are aware of the risk of contracting HIV from their migrant husbands often can’t talk to them about using a condom. “I understand how serious the problem is, but I cannot ask my husband to use a condom, he will not understand,” one woman told Ms Khaidarova.

Women living with HIV in Tajikistan tell stories of discrimination. They can be driven from their home by their husband’s relatives and may be prevented from seeking medical services, including antiretroviral therapy and treatment for tuberculosis. They are also often subjected to domestic violence, with their husbands prohibiting their wives from seeking treatment or being told to leave their home, along with their children. After their husband’s death, they can endure violence and abuse by their husband’s family, especially in rural areas.

When women living with HIV seek help, they can face a new challenge—stigma and discrimination from health-care workers. Many women are told that they cannot have children in the future, or that they should only marry a man living with HIV or that they should not marry and have sex.

“Stigma and discrimination against women living with HIV can have devastating consequences. It can stop them accessing the health services they need, tear families apart and profoundly affect their ability to live a normal life,” said Ms Khaidarova. “Stigma and discrimination must be stopped, and stopped now!”

The need to counter stigma and discrimination against women in general and against women living with HIV has been recognized by the government. Women were included as one of the priorities in the national development strategy. The new national AIDS programme for 2021–2025 includes a separate block on human rights and reducing stigma and discrimination against women living with HIV.

To bring attention to the issue of HIV-related discrimination in the family, in society and, too often, in medical settings, Ms Khaidarova took part in the #InSpiteOff social media campaign. Featuring the right of women living with HIV in eastern Europe and central Asia to live with dignity and respect, the #InSpiteOf campaign featured Instagram stories showing different aspects of women living with HIV and challenged the stereotypes and myths that surround the virus.

A common feature of all the women featured in the campaign is that they were supported at a critical time in their lives by their loved ones, women’s organizations or communities and are now not only living with HIV and challenging society’s stereotypes, but helping others.

“I told my story in order to help those women who face the same challenges today. I strongly believe that we all together can break the vicious cycle of stigma against women living with HIV in Tajikistan. We have to cope with our own fear in order to fight stigma and discrimination in society,” said Ms Khaidarova.

“I was walking to work, like I do every morning. There was a man on a motorbike at the end of the street. As I walked pass him, he grabbed my breasts and sped off.” This is a quote from one of the many stories featured on Hollaback! Jakarta’s website.

Sexual harassment and other forms of gender-based violence remain a serious issue for women in Indonesia. According to the National Commission on Violence Against Women’s Annual Report, there were more than 400 000 reported cases of violence against women in 2019, of which 28% were in public spaces. Public facilities, public transport and streets have become places where women do not feel safe and secure.

Hollaback! Jakarta is part of the global movement to end harassment in public spaces. In its quest to create safer spaces for women in the city, Hollaback! Jakarta works with ride-hailing app companies, public transport services, schools and campuses to provide training on gender-based violence.

“By training motorbike taxi drivers, they are not only able to understand forms of harassment, but also take an active part in intervening against harassment they see in public spaces,” said Noval Auliady, Co-Director of Hollaback! Jakarta. In Jakarta, where streets are filled with motorbike taxis, this is incredibly important.

Currently, women do not have full legal protection from gender-based violence. While there are laws that exist, gaps still remain. The Draft Bill on the Elimination of Sexual Violence was set to fill the gap, with an expanded definition of sexual violence and a focus on protection and victim restitution.

For several weeks in September 2019, students, activists and young people took to the streets of major cities in Indonesia to demand the passing of the draft bill. Hollaback! Jakarta was part of the core team for the campaign, creating a social media buzz, mobilizing people and meeting with parliamentarians.

Unfortunately, the draft bill was not passed in the last parliamentary sitting as conservative groups strongly argued against the clauses on the criminalization of marital rape. It is notable that the bill is still included in this year’s priority list of the national legislation programme. The massive support from civil society groups for the bill does increase its likelihood of passing and brings hope to the fight for ending gender-based violence in Indonesia.

The Internet has become a great ally for the movement. Not only was social media vital in mobilizing people to support the draft bill, it has also been a powerful platform to spread the important message of ending violence against women.

On its website, Hollaback! Jakarta encourages people to share their stories, showing how widespread, serious and familiar experiences of violence are for women. Like the quote above, people share personal experiences and some share cases they have witnessed as bystanders.

The Hollaback! Jakarta website has posted more than 300 stories of women experiencing various forms of gender-based violence, from catcalling to abuse. With each story posted, others can show their solidarity by clicking “I’ve got your back”. With its website and social media presence, Hollaback! Jakarta recognizes the potential to create a virtual safe space for women experiencing such issues.

“The more stories there are, the more people are willing to speak up and show their support. More bystanders are willing to intervene when seeing it first-hand. This is what we hope to achieve,” said Mr Auliady.

“For five years I have been subjected to harassment and threats—rape threats, murder threats, vilification, character assassination, phone calls to my family, to my mom,” said Lebanese television anchor Dima Sadek.

To raise public awareness about sexual harassment and bullying in Lebanon, particularly against female journalists during the recent protests, the Arab Foundation for Freedoms and Equality—UNAIDS’ regional partner on rights and health—has produced a video that sheds light on this human rights abuse committed against many women in the country.

Made in partnership with the HIVOS Women Empowered for Leadership (WE4L) programme, with funding from the Dutch Ministry of Foreign Affairs, the video highlights cases of harassment and assault—reporters whose bodily autonomy has been violated, whose personal telephone numbers have been leaked and who subsequently received rape threats and pornography and who have been verbally and physically attacked while live on television.

“You don’t expect that someone could be this hurtful or that they could say such things. You don’t know them and they don’t know you, but because you differ on politics, they feel they are allowed to talk to you in this way,” said Layal Saad, a reporter.

Since similar attacks, including online bullying and harassment both online and offline, have also been reported by female protesters, the video also seeks to raise awareness about the everyday sexual harassment, bullying and violence that women in general are subjected to, emphasizing the need for policies that allow women to become leaders.

Diana Moukalled, a journalist, explained that legal protection against sexual harassment is needed, since at present there are no laws that criminalize sexual harassment in Lebanon. “Lebanese women are among the most politically marginalized in the world, not just in the region. We see women present on many levels, yet there is a sharp discrepancy between the role of Lebanese women and their representation,” she said.

The video’s title is We Carry On, echoing the sentiment of the many women who watched and reacted to it—a feeling of resilience in the face of adversity and a determination to achieve the social justice demanded by women in Lebanon.

A new film about HIV in the Russian Federation by YouTuber and journalist Yuri Dud is stirring people’s interest about the epidemic in the country.

Since its release on 11 February, the video has been viewed by more than 14 million people, and the number of online searches about HIV and HIV testing has skyrocketed. According to Google Trends, the number of searches on where to buy an HIV test has increased by 4000% since the launch of the video—the highest level of interest in HIV and HIV testing in the past five years.

In the film, published on his YouTube channel, Mr Dud talks to people living with HIV, activists, experts and journalists. Through his interviews, the film voices some of the taboos surrounding HIV in Russian society, including condom use, and looks into the drug use epidemic in the country, the services available for people who use drugs and the lack of sex education, among other things.

It is clear in the film that younger people still lack basic information about HIV—things like the difference between HIV and AIDS, the effectiveness of treatment or even how the virus is transmitted are still mysteries for many in the country. “You can touch people living with HIV, exchange clothes, swim in the same pool, drink from the same mug, cuddle, kiss. It's stupid to be squeamish about people living with HIV. It is much better to be squeamish about unprotected sex and drugs. These are still the two main modes of HIV transmission,” said Mr Dud.

The popularity of the film has prompted government officials to take a closer look at the HIV epidemic and response.

“Yuri Dud’s film about HIV is undoubtedly useful. It provides a lot of important information and motivates people to get tested for HIV,” said Oleg Salagai, Deputy Health Minister, in his Telegram channel. Mr Salagai emphasized how the film draws attention to the issue of the stigma endured by people living with HIV. “HIV is not a death sentence anymore. It is very important that people living with HIV have access to HIV treatment to live a healthy and fulfilling life,” he wrote.

Mr Salagai was not the only government official reacting to the video.

Alexei Kudrin, the Head of the Accounts Chamber of the Russian Federation, promised to carry out a review of the effectiveness of HIV prevention and care programmes in the country. “This year, the Accounts Chamber will analyse the effectiveness of government resources allocated to people living with HIV in the Russian Federation,” he said.

And the first Deputy Head of the State Duma Health Committee, Fedot Tumusov, invited members of parliament to watch the film and discuss to the HIV situation in the Russian Federation. He is also planning a round-table meeting in the State Duma to explore ways to improve access to HIV prevention and treatment.

“The public response to Mr Dud’s film is incredible. However, even such a successful action is not enough. We need consistent and long-term activities to raise HIV awareness coupled with programmatic actions to ensure access to HIV testing and treatment for all,” said Alexander Goliusov, Director, a.i., of the UNAIDS Regional Support Team for Eastern Europe and Central Asia.

Eastern Europe and central Asia, of which the Russian Federation is a part, has the fastest growing HIV epidemic in the world. Most new HIV infections in the Russian Federation are among key populations, including people who inject drugs, despite the well-documented power of harm reduction programmes, where available, to reduce new HIV infections—insufficient access to sterile injecting equipment and the unavailability of opioid substitution therapy are stymying efforts in the country to prevent HIV infections among people who inject drugs.

The Investment Book, an online tool for UNAIDS donors that capitalizes on the unique value of UNAIDS, has been launched. Highlighting the opportunities that are available for partnership and donor investment, the Investment Book shows the impact of investment opportunities at the global, regional and country levels.

The Investment Book is filled with opportunities to support and partner with the Joint Programme in a variety of ways. Whether learning more about how the Joint Programme functions and partners at the country level, or learning more about opportunities to join forces around human rights or violence against women, each proposal tells an important part of the story of what it will take to end AIDS.

AIDS is unfinished business, and an investment in the Joint Programme is an investment in a future when AIDS is no longer a public health threat. As Winnie Byanyima, the Executive Director of UNAIDS, said, “The global response to HIV and the Joint Programme provide one of the strongest examples of the value of multilateralism and global solidarity.” Be part of making AIDS history. Partner with UNAIDS.

An advocacy toolkit to support a campaign by the first ladies of Africa to end childhood HIV and keep mothers healthy has been launched. The toolkit was developed as part of the Free to Shine campaign, an initiative of the Organization of African First Ladies for Development (OAFLAD) and partners to address the growing complacency in the response to childhood HIV in Africa.

Important gains have been made in the AIDS response for women and children. An estimated 1.5 million new HIV infections among children aged 0–14 years have been averted since 2010 in Africa. The proportion of pregnant women living with HIV on antiretroviral therapy increased from 44% in 2010 to 84% in 2018. However, challenges remain across the continent. AIDS remains the leading cause of death among women of reproductive age. Only half of all children living with HIV have access to antiretroviral therapy, leaving 742 000 children who are neither tested not treated for HIV. Coverage of services to prevent vertical (mother-to-child) transmission of HIV has stalled in eastern and southern Africa and decreased in western and central Africa in the past three years.

The toolkit sets out three areas that the first ladies should focus their advocacy efforts on: keeping women and girls HIV-free; preventing vertical transmission of HIV; and finding missing children and adolescents living with HIV and ensuring that they receive HIV services. Showing how to take the advocacy focus areas forward, the toolkit sets out the background to the three focus areas and gives key messages. A framework for action outlines how the first ladies should use their unique position to raise awareness, convene stakeholders, take action and promote community leadership.

Speaking at the launch, Winnie Byanyima, Executive Director of UNAIDS, said, “We must focus on what is needed next to achieve progress, accelerate our efforts to keep women and girls HIV-free, prevent HIV transmission from a mother to her baby and find the missing children and adolescents living with HIV.”

“We have made critical strides in the fight to end AIDS, but there’s still so much more to be done. We are seeing mother-to-child transmission rates rising in several countries, and we have to prioritize these vulnerable populations. Only with stronger, targeted programmes and campaigns like Free to Shine can we put women and children’s needs at the centre and achieve a generation free of AIDS,” said Chip Lyons, President and Chief Executive Officer of the Elizabeth Glaser Pediatric AIDS Foundation.

OAFLAD, the Elizabeth Glaser Pediatric AIDS Foundation and UNAIDS launched the toolkit on 9 February in Addis Ababa, Ethiopia, during the general assembly meeting of OAFLAD.

#InSpiteOf, a social media campaign featuring the right of women living with HIV in eastern Europe and central Asia to live with dignity and respect, has reached more than a million people.

Each of the #InSpiteOf Instagram stories showed a different aspect of women living with HIV and challenged the stereotypes and myths that surround the virus. The stories focused on testing and treatment, motherhood and the adoption of children by people living with HIV, disclosing one’s HIV status to partners and children, enjoying the right to work, living with HIV in custody, being a migrant living with HIV, violence and drug abuse, and contributing to HIV education and prevention.

A common feature of all the women featured in the campaign is that they were supported at a critical time in their lives by their loved ones, women’s organizations or communities and are now not only living with HIV and challenging society’s stereotypes, but helping others.

“Mutual support, women’s leadership in preventing violence, protecting rights and dignity, and combating stigma and discrimination have always been and remain one of the most important aspects in countering the HIV epidemic,” said Svetlana Moroz, Chair of the Eurasian Women's Network on AIDS.

On the eve of World AIDS Day 2019, Odnoklassniki, one of the Russian Federation’s most popular social networks, hosted a live event in support of the #InSpiteOf campaign. Celebrities such as the singer Zara, Irina Starshenbaum, Lyubov Aksyonova and others voiced their support for the campaign and read poems, accompanied by music played by Anton Sevidov of the band Tesla Boy. Vera Brezhneva, the UNAIDS Goodwill Ambassador for Eastern Europe and Central Asia, also attended the event, at which she stressed the importance of speaking honestly and openly about HIV and ensuring that people get the treatment and support they need.

“Be sure to listen and share #InSpiteOf stories! They are not only about one’s right to live with dignity, to love and to be happy. They are also about these women’s amazing power, spirit and will to live despite all odds. Each one of us has her own #InSpiteOf challenge, so let us support those who made it and let us inspire those who still doubt their power,” said Ms Brezhneva.

“Gender norms and taboos regarding sexual and reproductive life, as well as gender-based violence, increase women’s risk of HIV infection. Then, after being diagnosed with HIV, women face stigma and discrimination, hide their status and do not seek help. This vicious circle can only be broken with the women themselves, their mutual support and leadership, as well as a change in society’s attitude to HIV and the people it affects,” said Elena Kiryushina, Gender Focal Point at the UNAIDS Regional Support Team for Eastern Europe and Central Asia. 

The campaign was developed by the UNAIDS Regional Support Team for Eastern Europe and Сentral Asia jointly with the Eurasian Women’s Network on AIDS.