People living with HIV

Now 43 years old, Ariadne Ribeiro Ferreira, a trans woman working for UNAIDS in Brazil, advocates to leaders and speaks to media around the world. As she is an inspiration to colleagues, many are keen to learn more about Ariadne’s story.

From a young age, Ariadne sensed that she was different from those around her. “When my sister arrived, I understood, as a child, that I was like her,” Ariadne recalls.

Ariadne's situation, already challenging, became dangerous when her mother remarried. “My stepfather would beat me almost every day, berating me for my lifestyle,”  she recalls.

At just 13, Ariadne was forced to flee her home. "I had no choice," she remembers. Despite these difficulties, she was fortunate to have a caring grandmother who took her in and provided support. “My grandmother was different from the rest of the family. She was like a teacher to me,” Ariadne reflects. Her grandma had a transgender friend named Zeze, an activist who also inspired her.

At the age of eighteen while living with her grandmother, Ariadne’s life took a turn when she heard on the radio that a local hospital would begin offering sex change surgeries with state support. “My grandma was overjoyed at the news and danced for me,” Ariadne recalls with a smile. Shortly after Ariadne began her transition.

However, that same year she experienced a traumatic event when she contracted HIV after being raped. Despite this devastating ordeal, she refused to give up. She began treatment and continued her life with determination and resilience.

By the age of 24, she had completed all her surgeries, and she had been legally registered a woman. Ariadne officially changed her name on all her documents.

She pursued education to open up opportunities. “I had the chance to specialize at UNIFESP, the second-best university in Brazil. Since then, I have continued my education, earning a specialization, a master’s degree, and recently a Ph.D.”

Ariadne began her healthcare career in Itanhaém, where she worked in a peer education program at a health facility and contributed to a cooperation agreement with the State Government. “I focused on HIV prevention programs, gaining visibility as one of the few transgender professionals at the time,” she explains. “This recognition opened up new opportunities for me.”

Reflecting on her proudest achievements, Ariadne highlights her work with homeless individuals in São Paulo, Brazil and her role in establishing the state’s first shelter for homeless transgender people. Following these accomplishments, she joined UNAIDS in 2019, where she continues to advocate for transgender rights and supports people living with and affected by HIV, using her voice to uplift and empower others.

Ariadne's makes use of her extensive experience to champion the rights and well-being of everyone living with HIV, including UN staff. Working with UN Plus, she is pioneering innovative strategies to uphold dignity in every workplace.  Building a future free from stigma and discrimination, say Ariadne and UN Plus, is how to enable everyone to perform at their best, and to thrive.

After Evelyn Siula’s husband died, she knew she had to get tested for HIV. The result came back as positive.

"I had prepared myself mentally for either outcome, but it was still a shock."

She was jobless and with three children to care for.

The stigma and discrimination surrounding the virus meant that many people were scared to disclose their status. "I had three friends whose families rejected them because their HIV status became known,” Evelyn shares.

But Evelyn chose to break the silence early, starting by telling her young daughter. Family support played a crucial role in Evelyn’s journey. Her family stood by her, offering constant encouragement and strength, vital for getting through the many challenges.

Stigma followed Evelyn. She recalls a particularly painful moment: “At a community gathering, someone pointed at me and asked, ‘Can you believe she’s HIV-positive?’ It was one of the worst experiences being talked about like that.”

Evelyn became a strong advocate for people living with HIV, standing up to stigma everywhere, including in her church. At a gathering in a church, when a speaker criticized people living with HIV, she shared her own status as HIV-positive and as a church elder. Her openness has helped challenge stigma and gain support. Through her work she  learned that many fellow church members were struggling in silence, and so helped create the Livingstonia Synod Positive Christians group, known as LISAP+.

Despite her bold advocacy, Evelyn acknowledges how mental health challenges, particularly fear and anxiety, have affected her. “I have thoughts like: ‘What if something happens to me? What if I die?’ I worry about my children and how they would manage without me. These are the fears that raise my blood pressure.”

But over time, Evelyn’s diagnosis has become not just a challenge but also a source of strength.

Today, Evelyn works for UNAIDS and is the vice chair of the UN Plus Advisory Group. She is proud to show that people living with HIV are leading healthy and productive lives.

She has completed  Bachelor’s and Master’s degrees in business administration. “The day I graduated with my Master’s degree was extra special because I graduated alongside my eldest son. It’s rare for a mother and son to share such a moment.”

Evelyn encourages everyone to ensure they know their HIV status as the first step to taking control of their health: “Please get tested. It's just a status. If you're positive, follow the advice of your doctors. There is full life after testing HIV positive. Take your medication religiously, eat well, and live a healthy life.”

“Never stigmatize anyone,” says Eveyln, “because we are all one.”

In Togo, youth and adolescents living with HIV are stepping forward to lead the response against the AIDS epidemic. Through resilience, determination, and a collective vision, they have come together to form a new youth-led network called the Network of Positive Children, Adolescents and Youth Innovating for Renewal (REAJIR+), This grassroots initiative is dedicated to amplifying the voices of all children, adolescents and young people affected by HIV, and is a testament to the power of youth leadership in shaping their future. “We felt the need to create a space where young people living with HIV could be heard and represented,” says Sitsope Adjovi Husunukpe, Executive Director and one of the founding members of the network. “Many of us felt that our needs and concerns, although important, were not given priority in the development and implementation of policies and interventions relating to HIV prevention and care.”

The network’s creation was not without problems. In Togo, where leadership is often adult-driven, it took courage and determination to establish an organization run by and for young people. "Even though we faced difficulties, we knew we had to persist," explains Adjovi. "The environment wasn’t always supportive, but we kept believing in the vision of our network. We wanted to ensure that young people living with HIV, from all walks of life, had a space to advocate for their rights."

The need for young people to be involved in the response to HIV in Togo is clear. According to recent reports, only about 26% of young people aged 15-24 have enough knowledge about how to prevent HIV.[1] Children's performance in terms of adherence to HIV treatment is below the general average of 80.5%[2]. At the same time, 6,200 children aged 0 to 14 are living with HIV[3]. In Western and Central Africa, at least 16% of girls and 12% of boys aged 15-24 have sex before they turn 15[4]. These numbers show that more needs to be done to help young people understand HIV to protect themselves.

“Empowering young people goes beyond raising awareness; it’s about unlocking their potential to drive change. When they take ownership of their advocacy, they become catalysts for progress, shaping solutions that resonate in their communities. By equipping them with the right tools, we invest in a future led by those who understand the challenges firsthand.” says Dr Yayé Kanny Diallo, UNAIDS Country Director for Togo and Benin.

Koffi Emmanuel Hounsime, the network’s president, echoes the importance of youth-led advocacy. “At the beginning, people questioned our legitimacy. They asked, ‘Who are you representing?’ But once we formalized our network and built our credibility, we gained respect. Now, when we speak, we speak with authority on behalf of youth living with HIV across the country.”

Despite these hurdles, the network remains committed to its mission. “We are working not just for ourselves but for the future generation of young people living with HIV,” says Adjovi. "We want to ensure that we have better support, better care improving our life quality, and that we feel empowered to take decisions concerning our own well-being."

The network has already made significant strides. It has actively participated in national HIV dialogues and contributed to the development of the new Global Fund HIV grant, ensuring that the priorities of adolescents and young people are included.

For these young leaders, creating the network is about more than just advocacy. It’s about survival, empowerment, and hope. Emmanuel reflects, “We didn’t just create this network to represent young people, we created it to change lives. Every day, we’re working to make sure that no young person living with HIV feels alone.”

The Mentor programme for women in Kazakhstan was established to empower women living with or affected by HIV by connecting them with mentors who share their life experiences and provide critical support during challenging times. Co-financed by the Ministry of Foreign Affairs of the Republic of Kazakhstan and supported by UNAIDS, the program creates a safe space for women to learn, grow, and draw strength from one another. Through training seminars, support groups, and one-on-one mentoring, it helps women overcome stigma, rebuild their lives, and find their purpose. 

Meet three inspiring leaders from this programme—women who never saw themselves as heroes but are, indeed, changing lives. 

Halima

Several years ago, Halima found herself at a crisis center for women victims of domestic violence in Almaty, Kazakhstan. She was at rock bottom—diagnosed with HIV, grieving the loss of her second son, and trapped in an abusive marriage with a husband who drank heavily and often turned violent. Raised in a family that valued tradition, Halima felt compelled to keep the peace at all costs, but the weight of her daily life became unbearable. 

At her lowest point, an elderly doctor’s advice pushed her into action: “If you want your eldest son to end up in an orphanage, your husband homeless, and you in a mental hospital, you are sadly following that path.” Determined to change her fate, Halima sought help at the crisis center, which she credits with helping her climb out of the “dark hole” of depression. 

Today, Halima is helping other women in the mentoring programme. She shares her story with women, believing that her experiences can inspire others to seek life-saving HIV treatment and persevere.

At her lowest point, an elderly doctor’s advice pushed her into action: “If you want your eldest son to end up in an orphanage, your husband homeless, and you in a mental hospital, you are sadly following that path.” Determined to change her fate, Halima sought help at the crisis center, which she credits with helping her climb out of the “dark hole” of depression. 

Today, Halima is helping other women in the mentoring programme. She shares her story with women, believing that her experiences can inspire others to seek life-saving HIV treatment and persevere.

"I make sure to give each person my undivided attention so I can explain in simple terms what HIV is, what an undetectable viral load means, and how to get better,” she says.
Her work extends beyond Almaty, reaching women in rural areas where information about HIV and access to services is limited. “I have no special education, but I love learning. While I’m cleaning or mopping the floors, I listen to psychologists and doctors on my headphones,” she says, knowing that every bit of knowledge helps her make a difference. 

Lena

“This is a complex group,” says Lena from Pavlodar, Kazakhstan. She works with 17 women in a mentoring programme. Many of the women use drugs, have experienced domestic violence or have been in prison. Lena, aged 55, used drugs for over 20 years, but she has been drug-free for seven years, crediting opioid agonist maintenance therapy for helping her quit. 

“I went through all this myself. I remember how it was using drugs: I fell asleep—it’s winter. Woke up—summer,” she says. “If a person comes to therapy out of desperation, does not want to steal or torment their parents and loved ones, this programme can help them.” 

The therapy helps mitigate the need for drugs, but Lena emphasizes “it is important that peers and psychologists work with people and prepare them to leave the programme and have access to essential HIV prevention services and treatment”. 

After being released from prison nearly a year ago, Lena became a peer consultant in the women’s mentoring programme. 

“The problem for many people who use drugs is that they live with HIV and TB but cannot access available services or receive therapy,” Lena explains. Without a home or family, they are invisible to the social protection system and are often driven into desperate situations. “They need a helping hand. They are humans and live next to us."

Lena helps some people register for medical or social support facilities, and others to get treatment. She plans to meet with the akim (mayor) to propose a project to create a support system for people who are left behind. Lena believes there should be no situations where a person is alone and cannot be admitted to a home for disabled or elderly people because they are living with HIV. It is crucial to revise the laws so that everyone is allowed access to social institutions. 

Lena is dedicated to the programme. “I am reborn from this work. My eyes light up, and I feel strong and ready to help,” she says. 

Zulfiya

Zulfiya, a mother of three who has lived with HIV for nearly 20 years, uses her experience to support adolescents and young women in the program. “My task is to help them accept their diagnosis, start treatment, and stick to their medication,” she explains. She refers women to psychologists, social workers, or lawyers when additional support is needed. Zulfiya understands the denial many women face; she felt it herself two decades ago. Inspired by her son, an activist in the Teenager youth organization for adolescents living with HIV, she found her calling in guiding women who never thought HIV would touch their lives. 

Connecting women with other women in a predominantly male-dominated society is the foundation of the mentoring program. “Women in Kazakhstan are often forced to solve a wide range of problems themselves, whether it’s financial difficulties, lack of help, or protection from violence,” says Elena Rastokina, coordinator of the Mentor Programme for Women. “They are not used to uniting in women’s communities, do not know how to ask for help, and often do not know their rights.” Despite the challenges, she is immensely proud of what the mentors have achieved. “When women support each other, they find strength they never knew they had. We need each other, and together, we can change lives.” 

The mentoring programme covers 10 regions of the country. Dozens of women have received help. Some have learnt a new skill and found a job, and others have managed to accept their diagnosis and restore family ties. With help from the programme, many women who use drugs have managed to quit active drug use, improve adherence to life-saving HIV and TB treatment, and reconnect with the community.  

 For Aliya Bokazhanova, UNAIDS Country Director a.i. in Kazakhstan, these are incremental steps to empowering women from key populations. “Women living with HIV have the opportunity to develop and receive the necessary support and inspiration from experienced mentors, which contributes to their self-realization and integration into society,” she says. 

As of 2024, there are an estimated 40 000 [35 000–46 000] people living with HIV in Kazakhstan. New HIV infections are mostly among people from key populations (people who use drugs, gay men and other men who have sex with men, sex workers, and people in prisons and other closed settings). HIV prevalence among people who inject drugs is almost 7%, compared with 0.3% in the general population. 

Women living with HIV including women from key populations continue to suffer widespread reproductive coercion, mistreatment, and neglect when seeking reproductive health services and rights around the world, a new report by the International Community of Women Living with HIV (ICW) has revealed today. The report was launched at a joint ICW/UNAIDS event at the 25^th International AIDS Conference taking place in Munich, Germany.

The report, Confronting Coercion: A global scan of coercion, mistreatment and abuse experienced by women living with HIV in reproductive and sexual health services, shows that women living with HIV face practices that undermine their bodily autonomy. Reproductive choices are monitored, and women are subjected to various coercive practices.

The report documents experiences of sexual and reproductive health and rights (SRHR) violations and violence faced by women living with HIV and women from key populations from more than 60 countries across 3 regions and offers concrete actions for the reduction of coercive practices.

“This report offers a chilling reality of what women living with HIV experience every day in their struggle to realize their full sexual and reproductive health rights,” said Charity T. Mkona, Global Coercion Scan Committee, ICW ISC Global Chairperson. "For women living with HIV who have been subjected to coercive practices, mistreatment or abuse, the ability to heal and realize their full sexual and reproductive health and rights, demands accountability and justice."

The report reveals that reproductive coercion and mistreatment of women and gender diverse people living with HIV in SRHR services are a common, persistent, and widespread issues that require urgent action. Women living with HIV who reported engagement in sex work, drug use, or had disabilities reported experiencing coercive practices at higher rates than other women living with HIV.

Younger women living with HIV and women living with HIV who were migrants were also more likely to have experienced coercive practices than older women and women who were not migrants. Women have reported experiencing a lack of confidentiality and consensual care, as well as inappropriate medical interventions, such as unnecessary caesarean sections and forced or coerced abortions. Denial of care, stigmatizing comments or insults, and various forms of abuse - verbal, emotional, physical and sexual - were also documented.

While information about sexual and reproductive health and rights of women may be supplied to them, it is not always accurate, comprehensive, or up-to-date to empower them to claim their rights and often does not reflect the realities of women's lives.

"To end coercive practices experienced by women living with HIV, we must recognize the systemic and entrenched nature of these violations and understands that reform requires a systemic sea change and culture shift that respects women's bodily autonomy.” Sophie Brion, Director of Global Programmes at ICW.

“In a world where significant scientific advancements have been made in the treatment of HIV—including breakthroughs that allow women living with HIV whose viral load is undetectable to give birth to HIV negative babies—it’s shocking that some health care workers are not informed that women living with HIV can give birth without transmitting the virus,” said Christine Stegling, UNAIDS Deputy Executive Director for Policy, Advocacy and Knowledge. “This lack of education and coercive practices, including the forced sterilization of women living with HIV, must stop immediately.”

ICW is calling on governments worldwide, including donors and ministries of health, to eliminate these harmful practices. The organization is also calling on governments to ensure that health systems support women living with HIV to realize their full right to health, including sexual and reproductive health and rights, bodily autonomy and rights to informed consent.

"This report issues a powerful call to action to put the autonomy, desires and needs of women living with HIV at the centre of their sexual and reproductive health care programmes." said Immaculate Owomugisha Bazare, Global Coercion Scan Committee,  ICW Global Steering Committee Member.

Background

The Confronting Coercion report was developed through a blend of qualitative and quantitative research, incorporating insights from a gendered analysis of recent Stigma Index 2.0 data, a desk review of literature, and a qualitative study involving women, trans and gender non-binary people living with HIV who shared experiences of reproductive coercion over the past 3 years. The qualitative part of the study looked at coercion, mistreatment and neglect related to the SRHR of women and gender diverse people living with HIV in HIV, SRH and maternity care settings.

UNAIDS has supported the development of the report to address systematic gender inequalities, in particular gender-based discrimination and violence against women living with HIV, which fuels the HIV epidemic.

Every pain yields a lesson, and every lesson transforms a person

Parisa's life was forever altered by HIV 25 years ago. The virus struck her family, snatching her husband's job and halting her child's education. Tragically, her husband passed away two years later, leaving Parisa to navigate the daunting landscape of loss and discrimination.

Undeterred by adversity, Parisa embarked on a relentless mission for human rights, determined to combat the pervasive stigma and discrimination surrounding HIV. Initially, she immersed herself in seminars and conferences, volunteering tirelessly at counselling centres, where she shared her own experiences to chip away at the stigma and discrimination.

Her unwavering dedication caught the attention of Dr Minoo Mohraz, the former director of the Iranian Research Centre for HIV/AIDS (IRCHA), who offered her a pivotal role in a Positive Club—a sanctuary for those grappling with similar challenges. Thus began Parisa's transformative journey, marked by a series of initiatives aimed at raising awareness, eradicating stigma and discrimination, and supporting her peers.
 

WHAT IS THE POSITIVE CLUB INITIATIVE? The Positive Club is a meeting place for people living with HIV, who run the club themselves, with supervision from Parisa and colleagues. At the club, people receive training in arts, and sports, and as peer educators.  The Positive Club initiative was one of the successful programmes aimed at promoting positive health, dignity, and HIV prevention; it has been running for over 12 years with support from UNAIDS in collaboration with national partners and civil society organizations. Through this initiative, over 10,000 people living with HIV have been supported across 25 Positive Clubs, empowering them through training classes, workshops on HIV prevention, care and treatment, counselling sessions, and psychosocial support.

Over the years, Parisa's efforts have been nothing short of extraordinary. From managing a Positive Club in Tehran to representing people living with HIV in various influential platforms, including Iran's Country Coordinating Mechanism, its Oversight Committee, and Global Fund, she has been a relentless advocate for change. 

Her initiatives have spanned diverse arenas, from radio shows and collaborations with filmmakers to training workshops for religious leaders and healthcare providers. Parisa's impact reverberates across borders, as she leverages regional platforms like MENA Rosa --the first regional network dedicated to women living with HIV in the Middle East and North Africa-- to exchange experiences and champion global efforts against HIV stigma and discrimination with a particular focus on Women living with and affected by HIV.

Amid the COVID-19 pandemic, Parisa's compassion for people living with and affected by HIV was once again evident. She mobilized support networks to provide essential supplies for Positive Club members and vulnerable families, ensuring that the crisis does not exacerbate the challenges faced by PLHIV.

Reflecting on the progress made over the last 25 years, Parisa acknowledged the remarkable strides in combating HIV-related stigma and discrimination. Efforts to eliminate HIV-related stigma and discrimination have been led by the UNAIDS Country Office for Iran, alongside national partners of the AIDS Control Programme. Notably, the first PLHIV Stigma Index study, conducted in 2010, laid the foundation for understanding the landscape of stigma in Iran. Subsequently, a second PLHIV Stigma Index study, was carried out by the network of PLHIV in collaboration with UNAIDS, Global Network of PLHIV (GNP+), International Community of Women Living with HIV (ICW), Johns Hopkins Medical University (JHMU), National AIDS Programme (NAP), and with financial support from Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM) /UNDP. Parisa played an important role in implementing the Stigma Index 2.0 which provided updated insights.
 

COMPARING OF BOTH OF IRAN’S STIGMA INDEX STUDIES A comparison between the two Stigma Index studies conducted ten years apart, using updated methodologies, revealed promising changes. The prevalence of self-stigma among PLHIV decreased significantly from 80% to 40%. Similarly, the percentage of PLHIV refraining from seeking medical help has decreased from 80% to 19%, underscoring improved accessibility to healthcare services and increased health-seeking behaviour among affected individuals. Overall, reports of stigma and discrimination have decreased from 71% to 47%, reflecting tangible improvements in societal attitudes to HIV.

Parisa reflects on these notable shifts in HIV-related Stigma observed between the two studies. In the initial Stigma Index conducted a decade ago, internal stigma was predominant among PLHIV, followed by societal and healthcare provider stigma. However, in the subsequent study, internal stigma was significantly reduced, while stigma and discrimination from healthcare providers emerged as the most prevalent issue. The improvement observed in internal stigma among PLHIV could be partly attributed to the work of the empowering Positive Clubs. Additionally, this improvement highlights the importance of ongoing efforts to address stigma and discrimination comprehensively, with a particular focus on healthcare settings. By acknowledging these shifts and persisting in their efforts, UNAIDS Iran, Parisa and her colleagues remain committed to building a future free from the burdens of HIV-related stigma and discrimination.

Through her nearly two decades of hotline counselling experience, Parisa has witnessed a shift in attitudes, with increased awareness and openness surrounding HIV discourse. 

She credits grassroots campaigns and community-led initiatives for driving this transformation, paving the way for a more inclusive society.

In 2019, Iran joined the Global Partnership to Eliminate all forms of HIV-related stigma and discrimination, prioritizing a strong emphasis on interventions within communities, emergency/humanitarian settings, and healthcare facilities. With support from UNAIDS, protocols and training packages were developed to address stigma and discrimination in these critical areas. These efforts were carried out in close collaboration with national partners and civil society organizations, with training workshops being a key component of the initiative.
 

OVERVIEW OF GLOBAL PARTNERSHIP The Global Partnership for action to eliminate all forms of HIV-related stigma and discrimination is a critical vehicle for action to mobilise all countries to reach the political declaration and Global AIDS Strategy targets. It leverages partnerships to enhance coordination of interventions and funding; it provides knowledge and evidence-guided technical support; and increases accountability mechanisms and community leadership.

Parisa was actively involved in the implementation phase of these projects. Her contributions have been instrumental in advancing the work to eradicate HIV-related stigma and discrimination across humanitarian, healthcare, and community settings.

However, Parisa acknowledges the persistent challenges faced by PLHIV, from sporadic bouts of self-doubt to occasional rejections and the lingering shadows of depression and fear. Despite these hurdles, she remains steadfast in her belief that we can achieve a future free from stigma and discrimination.

As Parisa continues her tireless advocacy, her journey stands as a testament to the resilience of the human spirit and the power of collective action in fostering a world where every individual, regardless of their HIV status, is embraced with dignity and compassion. 

UNAIDS has played a pivotal role in the establishment and sustained operation of Positive Clubs for over a decade, catalyzing transformative changes in the lives of people living with HIV such as Parisa and in the fight against stigma and discrimination. Nonetheless, the journey towards eliminating stigma and discrimination remains unfinished, albeit considerably smoother and more steadfast with the collaborative efforts and political commitment of initiatives such as the Global Partnership.