People living with HIV

When Camila fell in love with her high school classmate Henrique, she didn’t know he was born with HIV. It was only after an incident at school that his HIV status was revealed to everyone. She then made an informed decision to take his side and live their love story together facing the challenges imposed by stigma and discrimination among friends and family.

Their love story was one of the main plots of the 2015–2016 season of the teen soap opera Malhação—Seu Lugar No Mundo (Malhação—Your Place in the World), from author Emanuel Jacobina. The serodiscordant couple interpreted by actors Thales Cavalcanti (Henrique) and Manuela Llerena (Camila) became some of the most loved characters of the season, which counted on the consultancy support of UNAIDS for the zero discrimination and HIV-related scenes.

Success among fans was such that the couple #Camique won a spin-off web series on Globo’s online entertainment platform Gshow called Eu Só Quero Amar (Young Hearts—I Just Want to Love). The five-episode web series soon became a bit hit—from April to June 2016, it was the third most watched original series on the platform, with almost 1 million views. On 16 October 2017, it was nominated for the Emmy Kids 2017 in the digital category.

The project is a result of an effort to get HIV back on the agenda for young people in Brazil. For that, UNAIDS teamed up with Globo’s social responsibility branch and worked with Mr Jacobina and writers Filipe Lisboa and Giovana Moraes to tailor HIV and zero discrimination messages to a young audience. In the spin-off production, the serodiscordant couple from fiction are invited to be part of a web documentary, alongside real serodiscordant couples, talking about their relationships, sexuality and the impact of HIV in their daily lives.

“The message and the narrative of today’s HIV epidemic have to be adapted to young people,” explains Georgiana Braga-Orillard, UNAIDS Country Director in Brazil. “The web series managed to capture the essence of this communication.”

"The idea of the web series came from all the discussions I had with UNAIDS about HIV in Brazil in the 21st century. We realized that everything that needed to be told would fit better and more clearly in a specific series on the subject,” says Mr Jacobina. “I think it is a very important work that has helped Brazil to resume the discussion about HIV, clarifying the issue of prevention. I feel honored and proud with the nomination.”

Malhação is Globo’s longest running soap opera—on air for over two decades—and reaches an estimated daily audience of 20 million people in Brazil.

Watch the series

A new mobile app for people living with HIV, Life4me+, is now available for free in 156 countries and in six languages—Armenian, English, Estonian, German, Russian and Ukrainian. The app was created by a German–Russian activist living with HIV and his team and aims to simplify medical information and treatment for people living with HIV in eastern Europe and central Asia and beyond.

The app was developed based on the experiences of its developers and HIV activists. For people living with HIV, the app works like a personal electronic patient card. It allows users to stay in touch with doctors online, saving and displaying test results, a calendar of blood tests and a prescription history, and sets up reminders about when to take medication and schedule appointments. There are also functions for recording weight, chest volume, blood pressure, disease history, HIV drug resistance, etc.

It has an interactive map that shows the location of medical centres and nongovernmental organizations supporting people living with HIV, daily HIV-related news and up-to-date information and popular scientific articles on HIV. A help button contains links to hotlines on HIV treatment and prevention and psychological and legal support for women, adolescents and drug users. Currently, the links to the hotlines are available only to people living in some countries in eastern Europe.

With the patient’s permission, doctors can monitor medicine intake and track adherence. The app has special provisions to protect anonymity and confidentiality. All the data are depersonalized, so there is no risk of a person being identified as living with HIV, even if a user’s phone or computer is used by someone else. Life4me+ can be downloaded from Google Play and the Apple App Store.

An updated version of the app will be released on 1 December, which will include functions aimed at preventing new HIV infections, hepatitis C and sexually transmitted infections such as syphilis and gonorrhoea, with automatic reminders to test for those diseases. 

During a two-day visit on 25 and 26 September to Belarus, UNAIDS Deputy Executive Director Luiz Loures and the Ambassador for Sexual and Reproductive Health and Rights & HIV/AIDS of the Netherlands, Lambert Grijns, met with civil society organizations and communities of people who inject drugs, women living with HIV, men who have sex with men and sex workers to hear their perspectives on the current needs and challenges of the AIDS response in the country.

Mr Loures and Mr Grijns also met with the Minister of Health of Belarus, Valery Malashko, and the First Deputy Minister of Health, Dmitry Pinevich, to discuss the HIV epidemic in the region and exchange best practices on the AIDS response in western and eastern Europe, particularly around prevention policy and programme implementation. Potential collaboration between the Netherlands and Belarus was also discussed.

During the meeting, Mr Loures acknowledged the efforts of Belarus in scaling up its AIDS response using domestic resources. The country is on track to achieving the 90–90–90 targets by 2020 and is committed to expanding HIV prevention programmes, including programmes for key populations.

Mr Grijns noted the achievements of Belarus in harm reduction, reducing the cost of antiretroviral treatment and eliminating mother-to-child transmission of HIV. He also commended the close collaboration with civil society and that domestic funds would be provided to nongovernmental organizations, ensuring continuity of community outreach and service delivery.

As a young volunteer in a Burkina Faso hospital, Christine Kafando, had a lot of convincing to do. In 1997, HIV meant deadly illness so no one believed her when she told people living with HIV that she was positive.

“People accused me of lying saying I was too healthy looking,” she said. One time, Ms Kafando took her treatment with someone to show them that she was indeed living with HIV.

Despite patients’ resistance, she persevered.  She even started going to people’s homes to do routine check-ups.

“At the time,” she explained, “the hospitals and staff did not know how to handle HIV, so we stepped in and filled the gap.”

It had been a year since Ms Kafando had found out that she was living with HIV. She and her university sweetheart (and now husband) had gone for a test together. He was negative but she was not.

She describes being very scared and her dreams dashed. Her husband desperately wanted children and left her six months after her diagnosis.  With her family’s support, she started raising awareness about HIV. Ms Kafando became the first HIV positive woman to reveal her status publicly in Burkina Faso.

“I realized that people thought HIV happened to others but I proved to them that it can happen to anyone,” she said.

Having joined the newly formed REVS+ organization - run and led by people living with HIV- as a volunteer, she found her purpose.

She became as trusted as the various doctors and often acted as a liaison between families and the hospital.

It dawned on her that helping people access treatment and monitor their health was one thing but more needed to be done on the prevention front.

She split her time between the hospital and testing clinics.

Tirelessly Ms Kafando hammered over and over the same message, “Better to know what ails you than live in ignorance. Get tested.”

The ‘loudmouth’ as her peers call her even got Burkina Faso’s president to pay attention. “I told him, ‘if you do nothing about HIV, you will have no one left to govern,’” she said proudly.

Suddenly she knew that her fighting spirit paid off because the then president Blaise Compaoré not only got tested but treatment costs decreased and testing became free of charge for women and children.  

Burkina Faso sociologist and HIV technical coordinator Dao Mamadou describes Christine as someone who puts words into actions.

“She has dedicated nearly 20 years of her life helping women and children living with HIV who has never ceased to serve others,” Mr Mamadou said.  

She adopted two children and furthered her experience in the health sector.

Reflecting back to 2003, she said that as community healthworkers, they had forgotten a key component.  

“A few times, couples living with HIV would come to see me and I would inquire about their baby and the mom would say, ‘he died,’” she said.

No one had thought about HIV transmission to babies and the children’s well-being beyond birth so Ms Kafando founded the Association Espoir pour Demain (AED).

Her organization raised HIV awareness among expectant mothers and in maternity wards. In no time, AED became the reference for all pregnant women living with HIV.

Mr Mamadou, the HIV technical coordinator, said he had seen Christine become an icon.

“She is considered to be our Mother Teresa for countless orphans and vulnerable children,” he said.

Through time her  organization branched out beyond Bobo Dioulasso. She got various HIV organizations to join together to coordinate funding and resources better.

Her proudest moment, she said, was getting French and Burkina Faso national recognition in 2011.

“I realized upon getting those honors that I saved lives,” she said.   

Her current schedule has her shuffle back and forth from the capital city to Bobo almost twice a week.

She is frustrated because young people these days seem impermeable to HIV.

“HIV treatment has coaxed people into thinking that they can beat this, but that’s not the way to think about it,” she said.

Her current battle entails launching new HIV prevention campaigns and getting the word out although she admitted, “I will always be a fighter in the AIDS response.”   

The 2030 Agenda for Sustainable Development takes ​to scale ​what the AIDS response has been working towards for 30 years—a multisectoral, rights-based, people-centred approach that addresses the determinants of health and well-being. The individual stories in this series highlight the linkages between HIV and related Sustainable Development Goals (SDGs), each told from the personal perspective of people affected by HIV. The series paints a picture of how interconnected HIV is with the SDGs and how interdependent the SDGs are with each other. Most importantly, the stories show us the progress we have achieved with the AIDS response and how far we have left to go with the SDGs.  

Eighteen years ago, at the age of 19, Florence Anam became pregnant. As a teenager she had been flattered by an older man showering her with attention. A good student in school and just about to start university, her parents told her that they were disappointed in her, but never brought up the subject again.

“When I was pregnant, there were never any questions of how I got in this situation or who was responsible,” Florence said. “Sex was a taboo topic and not a discussion that parents had with their children.”

Florence did not know of her HIV status until 2006. During a national Kenyan HIV prevention campaign, she and four other friends went to get tested. When the HIV tests confirmed she was living with HIV, she was shocked.

The reality hit when a year later Florence was dismissed from her job because of her HIV status. “Back then, there were no HIV networks for young people, neither was there as much information available, so I contacted a woman who had been featured in a newspaper and lashed out at her, asking, “Why am I not allowed to be productive if I am not sick yet?”” explains Florence.

That woman, Asunta Wagura, was the Director of the Kenya Network of Women with AIDS. Asunta asked Florence to come in and see the organization, for which she then started volunteering. She describes the experience as a serious reality check. She heard other women’s stories, of how many of them lived in poverty and dealt with violence. “It was like plunging into this world that as a protected child I never even knew existed; all of a sudden my problems became trivial and I knew I needed to let other people know what I was seeing every day.”

She also became more vocal about HIV, bringing a lot of attention to herself and her status.
“I was done with having people dictate to me what their opinions about my life were, I missed the girl that I was and I desperately needed to get out that hole,” she says.

Part of Florence’s advocacy and communications work with the International Community of Women Living with HIV involves monthly mentoring meetings with girls and young women living with HIV. “I want to raise their consciousness regarding their life 20 years down the road,” Ms Anam says.

Florence considers that her life is full. Her 17-year-old son and 11-year-old adopted daughter affectionately chide her for bringing up sex and other “awkward” subjects at the dinner table.
“I am like the weird mother speaking about sex and responsible sexual behaviour in the most insane places,” Ms Anam says. “I keep repeating to them that decisions you make now, however immature, will have a long-term impact.”

SDG 5: Achieve gender equality and empower all women and girls

Gender inequality, discrimination and harmful practices create a culture that negatively impact women, girls, men and boys. Girls and women are disproportionately vulnerable to and impacted by HIV infection. Frequently they do not have the ability to control or determine their own life choices, such as going to school, who they marry or have sex with, the number of children they have, the health-care services they access, their employment options, or their ability to voice an opinion and be respected.

Programmes designed to educate and inform girls and women about the risks of HIV and provide some means of protecting themselves are essential building blocks of the AIDS response. And yet, however necessary, they are insufficient. Access to comprehensive sexuality education and sexual and reproductive health services can only ever be partially successful in protecting girls and young women from HIV if their potential male partners remain unaware of or unwilling to change their behaviour. Increasing male awareness of the risks of HIV, providing men and boys with the means of prevention, and enabling them to change their own behaviour and see the benefits of a balanced and respectful relationship are essential to decreasing the number of new HIV infections and increasing gender equity.

Like many young women, Florence grew up without comprehensive sexuality education or access to sexual and reproductive health services. She has made it her life’s work to expand youth-friendly HIV and health services and to mentor young women living with HIV, giving them hope for the future. Florence’s story encapsulates how important progress on SDG 5—achieve gender equality and empower all girls and women—is to enabling young women and men to make informed decisions on protecting themselves from HIV infection.

The 2030 Agenda for Sustainable Development takes ​to scale ​what the AIDS response has been working towards for 30 years—a multisectoral, rights-based, people-centred approach that addresses the determinants of health and well-being. The individual stories in this series highlight the linkages between HIV and related Sustainable Development Goals (SDGs), each told from the personal perspective of people affected by HIV. The series paints a picture of how interconnected HIV is with the SDGs and how interdependent the SDGs are with each other. Most importantly, the stories show us the progress we have achieved with the AIDS response and how far we have left to go with the SDGs.  

New Year celebrations took a turn for the worse last year for Welber Moreira. The 23-year-old Brazilian found out he was living with HIV.

He described feeling ill the day after Christmas, so he went to a public health clinic to get some answers. Instead, the doctor posed a startling question. He asked me, “‘Can I see your most recent HIV test result?’” Welber had never thought that a virus from some long-gone biology class would ever affect him. The doctor told him to go to one of the public voluntary counselling and testing centres in his hometown of Ribeirão Preto, north of São Paulo, where he took a rapid HIV test. His positive diagnosis was confirmed by a second test.

“After all the crying in front of the nurse, I thought of my girlfriend, because we had not been using condoms,” Welber said. His girlfriend tested negative for HIV. She began her 28-day prevention treatment even before Welber started taking his own antiretroviral medicine. Brazil’s public health system covers all HIV prevention and treatment costs, which made it easy for both of them to start taking medicines.

Something else worried him. “I was very scared and afraid of the side-effects,” Welber said. Surprisingly, he said, he has felt fine since starting his HIV treatment. Now, before going to bed he takes two pills a night. Shrugging his shoulders, he said, “I can’t imagine what it was like in the past, to take several pills a day, at different times.”

He is among more than 100 000 Brazilians to be given a new HIV medicine called dolutegravir (DTG), which has fewer side-effects and is more effective. The Brazilian Ministry of Health successfully negotiated to purchase DTG at a discount of 70%, bringing down the price per pill to US$ 1.50 from US$ 5.10. As a result, more people will have access to this new medicine within the approved budget for treatment in the country (which stands at US$ 1.1 billion for 2017).

Welber is thankful for his girlfriend’s support and the efficiency of the clinic and centre, all of which helped him overcome the initial trauma.

Bringing up HIV and his status no longer upsets Welber. He said he speaks openly about it to his friends and at work. A small part of his family didn’t cope well with the news but he has not lost hope.

He has big plans with his girlfriend. “We plan to have two kids, starting three years from now,” he said.

He also said that he feels like he has to help others. “Whenever I can, for example, I pass by the local health clinic and grab some condoms for my colleagues at work and my friends,” Welber said. “It’s an opportunity for me to share what I know and to talk about prevention.”

SDG 9: Build resilient infrastructure, promote inclusive and sustainable industrialization and foster innovation

The scale-up of HIV treatment in low- and middle-income countries over the past 15–20 years is one of the greatest success stories of global health. In sub-Saharan Africa at the end of 2002, only 52 000 people were on treatment. Thanks to increased levels of production and full use of patent flexibilities, the number of people on treatment grew to 12.1 million in 2016. Lessons learned from the AIDS response have gone on to increase access to medicines for people living with TB, hepatitis C and noncommunicable diseases.

Researchers and scientists continue to innovate and improve the efficacy of antiretroviral medicines and to pursue a cure for HIV. Antiretroviral medicines have evolved so a person living with HIV who is taking their medicines regularly can now expect to live a normal lifespan.

When the Brazilian Government granted universal access to antiretroviral medicines in 1996 they changed the course of the national epidemic and increased survival rates remarkably. Dire predictions of large-scale AIDS-related deaths never came to pass. Brazil’s Unified Health System is continuing to lead the way and has recently incorporated the most advanced scientific and medical technology into routine HIV services. Welber’s story tells us how much SDG 9—build resilient infrastructure, promote inclusive and sustainable industrialization and foster innovation—is interwoven with increasing equitable access to medicines and achieving progress on ending AIDS.

Naomi Watts, UNAIDS Goodwill Ambassador, visited Nyumbani Children’s Home in Kenya on 11 July to learn about Kenya’s prevention of mother-to-child transmission of HIV programme and the work done in the home to care for children living with HIV.

In the space of just a few years, as the result of a strong partnership between political leadership, programme implementers and the community, new HIV infections among children aged 0–14 years in Kenya have fallen from 12 000 in 2013 to 6600 in 2015. In June, under the leadership of the First Lady, Margaret Kenyatta, Kenya launched a new framework to accelerate the country’s efforts towards elimination of mother-to-child transmission of HIV and syphilis. The framework calls for the elimination of stigma and discrimination and the creation of an environment that empowers women living with HIV.

Nyumbani Children’s Home opened in 1992 and is currently home to 124 children living with HIV. The home provides nutritional, medical, psychosocial and spiritual care to the children and to the surrounding community, providing a place of safety in Nairobi for abandoned children living with HIV. In addition, the organization has a community- based programme that supports more than 3100 children living with HIV who reside in the informal settlements of Nairobi and 1000 orphans in Nyumbani villages.

Mss Watts and her two sons visited several facilities in the home, including its state-of-art laboratory equipped to undertake early infant diagnosis and viral load testing. Ms Watts congratulated Nyumbani Children’s Home for the impact it makes on a daily basis in the lives of so many remarkable and empowered children. She committed to continue to create awareness of the need to ensure that children living with HIV remain AIDS-free. 

GENEVA, 11 July 2017—UNAIDS is deeply saddened by the death of Prudence Mabele. Her contribution to the AIDS response began in the early 1990s during her work with the Society of Women and AIDS in Africa. Ms Mabele was more recently the President for the Society of Women Living with HIV and the Deputy Chair of the Civil Society Forum in the South African National AIDS Council. Ms Mabele was tireless in her efforts to amplify the voice of African women living with HIV in regional and global forums.

“Prudence Mabele was a global icon, and an example of living positively with HIV. I cannot think of the AIDS response in South Africa and imagine it without her,” said Michel Sidibé, UNAIDS Executive Director.

In 1992, Ms Mabele became one of the first women living with HIV in South Africa to disclose her status. Ms Mabele said she disclosed her status because she was tired of the silence and stigma surrounding HIV. She wanted to set a precedent and encourage other women living with HIV to discuss their status with loved ones, to live without shame, to seek treatment and to lead happy and fulfilled lives.

Ms Mabele championed the cause of the greater involvement of people living with HIV. At a time when treatment was just beginning to be available, she was a driving force in addressing issues around stigma and discrimination. Ms Mabele was passionate about the need to organize and support women living with HIV.

She was also a founding member of the Treatment Action Campaign, founder and Executive Director of the Positive Women’s Network (PWN) and a founding member of the Pan African Positive Women’s Network. PWN set out to improve the quality of life of people living with HIV, providing a support network and platform for women to articulate their feelings and needs regarding their HIV status and ultimately to design positive projects for themselves.

Ms Mabele had been a very close friend of UNAIDS for a long time. Ms Mabele collaborated with UNAIDS in raising awareness about women living with HIV and their needs, and graced the cover the UNAIDS flagship publication OUTLOOK. She previously worked as a staff member with the UNAIDS South Africa Country Office and continued to be closely associated with UNAIDS over the years.

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.

The Kokoda trail winds through the Owen Stanley Range in Papua New Guinea and is billed as one of the world’s most challenging treks. Nearly 100 km long, the track goes through rugged mountainous terrain and hikers are buffeted by hot and humid days followed by intensely cold nights. Carol Habin is a member of the national organization of people living with HIV in Papua New Guinea, called Igat Hope Inc., and she decided to raise HIV awareness by hiking the trail in June. She joined a group of around 20 people from Australia, which also included HIV-positive people.

“As a woman who works in HIV advocacy programmes, I have come to realize that women are vastly underrepresented in my country,” said Ms Habin. “Violence against women in Papua New Guinea is extremely high. I wanted to walk the trek to not only raise awareness about HIV stigma and discrimination, but also to empower women living with HIV and to make sure their voices are heard.”

The initiative Ms Habin joined was led by the HIV Foundation of Queensland under the Kokoda+Stronger Than You Think project. UNAIDS supported the mobilization of resources for Ms Habin’s participation in the trek. The team was led by Ji Wallace, who is an Australian living with HIV and an Olympic athlete.

“With a lot of work, we can change the attitude of the community,” said Mr Wallace. “It may not happen overnight, but we have the power within us to change.”

The trekkers took eight days to complete the hike. They conducted HIV awareness sessions with people living in villages along the track.

“I was surprised to find out how little the villagers knew about HIV,” said Ms Habin. “This initiative was very helpful in getting them to understand people living with HIV. I think also thanks to media coverage we have helped transform the way the public views HIV-positive people. I’ve shown everyone that as a woman living with HIV I can do anything, even hike one of the world’s toughest trails.”

Papua New Guinea has the largest HIV epidemic in the Pacific Islands. In 2015, there were 40 000 people living with HIV in the country and 2700 new HIV infections. The country is one of the few in the Asia and the Pacific region in which women are at higher risk of HIV than men, with 56% of new HIV infections occurring among women.

“I particularly want young women to understand they can say no to sex and stand up for their rights,” said Ms Habin.

The hikers completed the hike in late June and returned to Port Moresby for a celebration. UNAIDS Papua New Guinea Country Director David Bridger congratulated the team.

“Papua New Guinea has made immense progress in its HIV response,” said Mr Bridger. “But until the fear that generates misconceptions and breeds stigma is overcome, the AIDS epidemic will continue to claim lives. The Kokoda+Stronger Than You Think initiative is an innovative way to help break down misconceptions and celebrate the strength of people living with HIV. I congratulate your efforts.”

Ms Habin plans to build on the initiative and work with the Government of Papua New Guinea to encourage more people to take HIV tests and adapt HIV prevention to the needs of young women.