When Robinah Babirye was at boarding school, her secret was difficult to hide. Sleeping in an all-girls dormitory, everyone knew everyone else’s business, especially around bedtime. “It was hard to bring out my medicine,” she said. “It would raise questions.”

Ms Babirye and her twin sister were hiding their HIV-positive status. Before starting at boarding school, the daughters and their mother would take their medicine daily at 10 p.m., and that was all there was to it.

Once she enrolled at university in Kampala, Uganda, in 2013, hiding became more difficult. Her room-mate was suspicious and spread rumours. Having been born with HIV, she couldn’t help feeling that life was unfair.

“At the time, I hadn’t accepted that I was living with HIV and that I had to live with it for the rest of my life,” said Ms Babirye. She described years and years of avoiding ever speaking to anyone about her regular visits to the clinic or about taking treatment. Then her mother died from cancer and she didn’t know how to cope.

Glancing above her eyeglasses, she added, “When I saw my mother fighting, it gave me strength, but when she died that became a terror.”

Ms Babirye more or less gave up. She stopped taking her medicine and drifted.

Asia Mbajja, founder and director of the People in Need Agency (PINA), a nongovernment organization for young people living with HIV in need, described appeals from distraught teenagers. She had helped many of them as children while working as a treatment coordinator at the Joint Clinical Research Centre children’s clinic.

“I kept promising them that life would change and get better, but as they grew up, their needs changed,” she said. “I needed to do something that would make a difference.”

In 2012, Ms Mbajja quit her job to start PINA. Among her first clients was Ms Babirye, whom she has known since the age of 10. She hammered over and over the importance of taking the daily dose of antiretroviral therapy.

“The problem is that all of Asia Mbajja’s upbeat encouragement would come tumbling down once she was no longer around,” Ms Babirye said. The young woman felt defined by HIV.

“When you're told that you have to take medicine for the rest of your life, coupled with the rumours and stigma, I feared I would forever be stuck,” she said. “Despite living with HIV, I am still a woman with feelings.”

Through her involvement with PINA, in 2014 Ms Babirye travelled to the International AIDS Conference in Melbourne, Australia. The young woman felt elated to discover a world where her status seemed a non-issue, but upon her return she couldn’t help feel like there was a line she could not cross.

Ms Babirye felt tired. She wavered between ending her life and changing her life for good.

Donning an I am HIV Positive t-shirt she posted a photograph of herself on Facebook. “My heart started to beat so fast, I couldn't bear to see the comments,” she said. She paused and let out a gasp and said, “I was expecting a lot of negativity, but the comments were largely positive.”

Her twin sister, Eva Nakato, couldn't believe what she had done. After some thought, she decided she couldn’t let her sister fight alone, so she also disclosed her status.

“When people said we need more people like her it motivated us,” said Ms Nakato.

One of the first people to congratulate the twins was Ms Mbajja. Ever since, the duo have been at the forefront of PINA, testifying, mentoring and singing. Ms Nakato explained that at the children’s clinic they used to sing as a group, and at PINA they brought it to a whole new level.

“We started using music to convey HIV awareness messages," she said. Songs like Never Give Up, Yamba (Help) and ARV. Their latest projects now include launching a television series around HIV and relationships and documenting gender-based violence.

“When we met survivors of sexual abuse, that pushed me to make a movie,” Ms Nakato said, adding that videos and music can get messages across.

Ms Babirye finished her university degree last year and dreams of independence. 

In the long term, she said her vision is a generation that is AIDS-free and stigma-free. “To accomplish an AIDS-free world, each individual has a responsibility to do something and break down cultural and societal barriers,” she said.

Carrying a hoe over her shoulder as she ambles along a dirt road, Pili, a young Tanzanian woman, eyes an empty market stall. Talking to her friend while clearing a field, she says, “Digging all day, fighting for money, I can't do this my whole life.”

So begins the movie Pili, which focuses on a single mother with two children trying to make a better life for herself and her family. Farm work pays less than US$ 2 a day and the 25-year-old has a hard time keeping up with childcare, school supplies and medical check-ups. Pili lives with HIV and struggles to keep her HIV status a secret. She fears stigma and is scared that she will not get a loan to pay for the market stall she dreams of renting.

Produced by Sophie Harman and directed by Leanne Welham, the movie draws you into Pili’s daily struggles to gather money to become her own boss. Spoiler alert: she succeeds, but at a cost.

Ms Harman, an academic at the Queen Mary University of London, never dreamed of making a film. But she realized that a movie could be a collaborative project that would enable her to highlight the plight of many women.

“When I teach, I often have used film, which is very impactful, so I wanted to do my own film, but as a realistic feature based in Africa,” Ms Harman said.

In 2015, she won an AXA Insurance Outlook Award in recognition for her work in global health politics and HIV governance. The award gave her the money, but she needed a movie director—film-makers were wary about producing a film with untrained actors on a shoestring budget in the middle of nowhere. Within a year, though, she met Leanne Welham, a short-film director with years of experience in Africa.

What clinched the deal was Ms Harman’s access to the communities among which the film was to be made. Having started a nongovernmental organization in 2006 called Trans Tanz, Ms Harman had been inspired by women’s stories. Trans Tanz provides free transport for people living with HIV in rural areas so they can go to clinics.

Ms Welham and Ms Harman pitched their movie idea to the community and started compiling stories based on real-life experiences.

“To protect the women, we stressed to everyone that this would be a story based on our 80 interviews and my research,” Ms Harman explained. The community approved and gave feedback on the screenplay.

They now needed characters and to cast the leading actress, Pili. During an audition, Ms Welham met Bello Rashid, who had come to the session out of curiosity with her older sister. The young woman overcame her shyness and responded well to direction and landed the role.

Because of the language of the movie (Swahili), and the varying degrees of literacy, the British film crew mixed improvisation with a script. The film was set in Miono, a village near the Tanzanian coast.

“The cast are all real people, with only one trained actor, and 65% of them are living with HIV,” explained Ms Harman. “I wanted to protect the women and make this as anonymous as possible while still reflecting the daily grind.”

The five-week shoot in early 2016 taxed everyone.

“We not only had a very tight budget, we also dealt with illness, funerals and attempted extortion,” Ms Harman said. Reflecting on this, she said it created a heightened sense of camaraderie.

What struck Ms Welham was the amount of time it takes for people to get around. “The concept of time and the impact it has on one’s life cannot be stressed enough,” she said.

“As a filmmaker, I wanted to show the tranquil pace of Miono, but also the frustration and isolation too,” Ms Welham said. Pili walks to the field for 40 minutes then walks back the same distance. To get to a health clinic where no one will recognize her from the village she has to take a bus. It breaks down on the way back so she is late to pick up her children and nearly misses her meeting with the council of women who approve micro-loans. All of this in the blistering heat.

The movie premiered in September 2017 and then played in Geneva, Switzerland, as part of the World AIDS Day celebrations on 1 December. It won two awards at the Dinard British Film Festival and was part of the official selection at the Pan African Film and Arts Festival. The movie will be screened in British cinemas in the first half of 2018, with all the proceeds being given to the Miono community.

Since filming the movie, Ms Rashid has decided that she wants to stop working in the fields and to study to become a nurse.

Ms Welham is particularly proud that the movie allows viewers to step into a world they may not know about and see that, despite the poverty, the issues remain the same. Her producer agrees. “The important part of Pili is that it’s a universal story,” Ms Harman said. “You might not be HIV-positive or live in rural Africa, but everyone can associate with wanting something better for their life and their children.”

Civil society leaders from western and central Africa have laid out a road map to take a more active role in scaling up HIV prevention and treatment services in the region. The eight leaders reiterated that without their involvement and help, it would be difficult to reach people and the treatment goals.

“We want to be more involved, because we are on the ground and we are the people concerned,” said Daouda Diouf, Director of ENDA Dakar and rapporteur of a three-day meeting of civil society, UNAIDS and partners held from 19 to 21 February in Geneva, Switzerland.

In 2016, the western and central Africa region faced disproportionately high AIDS-related deaths compared to its share of the world’s population. Although HIV prevalence in the region remains low, few people living with HIV there have access to treatment.

The leaders pointed out the many challenges they face. In many francophone countries, medical care remains too centralized, carried out mostly in clinics, limiting outreach from peer educators and community workers. They also said that stigma and discrimination keeps people away. National health policies often do not allow civil society to deliver key services, such as HIV testing.

Hidden fees for health services paid by the patient also dissuade people from seeking help. And funding and political will have waned in recent years, reducing their capacities.

Aliou Sylla, Director of Coalition Internationale Sida-Plus, stressed that civil society has many solutions and experience from pilot programmes that have been proven to work.

“Because we have clinics that do not look like clinics, because we do peer-to-peer HIV testing and because we offer counselling, we are much more capable of reaching vulnerable people,” he said. “Just have confidence in us.”

His colleague wholeheartedly agreed. Ibrahima Ba, coordinator at Bokk Yakaar, a nongovernmental organization and leader of the regional network for people living with HIV, added that not only can civil society reach people, it can also monitor the progress of national and regional HIV plans. “Count on us to be implementers, but also watchdogs, so that governments are held accountable.”

The road map includes an upcoming regional meeting bringing together civil society from 12 western and central African countries in order to incorporate their views in national HIV plans. UNAIDS will be advocating for them to have more influence in countries.

In closing the meeting, Deputy Executive Director Luiz Loures said, “The data and the evidence show that we are not optimizing our efforts in the AIDS response in this region.” Looking at the civil society leaders, he concluded, “We need to use civil society as an engine.”

Suhaila Msham Mwarimwana is 19 years old and lives in Zanzibar City. She was born with HIV and lost both parents before she was nine. But, despite the difficulties she faces, she is an inspiration for other adolescents and children living with HIV. 

“When I was about 12, I overheard neighbours saying I was HIV-positive. So I asked my oldest sister and she told me I had a bone-related disease,” she says. “But I sensed this was not the truth, so after some time I insisted and she took me to the Zanzibar Association of People Living with HIV/AIDS and I discovered my HIV status.”

Ms Msham Mwarimwana says her first thought was for her youngest brother, who also tested HIV-positive. She felt hopeless and desperate. “I thought HIV was a death sentence,” she says.

At a Zanzibar Association of People Living with HIV/AIDS (ZAPHA+) children’s club, Ms Msham Mwarimwana was given information and advice on how to live positively with HIV. She started HIV treatment and has stuck to the regime since, despite a lack of adequate nutrition, which she says makes adherence difficult.

After she finished secondary school she began volunteering for ZAPHA+. She facilitates clubs for children and adolescents. “We exchange ideas, share our challenges and advise one another,” she says. Her only wish is that the club had more space and was able to provide refreshments, particularly for the younger children. “We stay there and talk for a long time!” she says.

She is also a member of the Young Reporter Network, a national consortium of community-based children’s radio projects that reaches millions of listeners. She and other young reporters produce a 30-minute programme each fortnight, using audio diaries, commentaries and interviews to share their stories.

Ms Msham Mwarimwana has big dreams and plans to study journalism. She is proud of her contribution to the AIDS response in her country. “My role towards getting to zero—zero new HIV infections, zero discrimination and zero AIDS-related deaths—is to get my story heard to confront stigma and discrimination and draw attention to community issues that affect children and youth,” she says.

Looking back, Ms Msham Mwarimwana says she would have liked her parents to tell her she was HIV-positive. She says it is very important for children to know their HIV status. “I could have started my treatment even earlier,” she says. “Parents of HIV-positive children need to educate society that HIV can affect anyone and there is no shame.”

She believes that AIDS-related illnesses are a leading cause of death among adolescents in eastern and southern Africa because many adolescents are unaware of their HIV status and do not know that there are life-saving treatment and support structures available to them. “ZAPHA+ is my second home,” she says. “I am so thankful for the support I have received there.”

She has a simple message for her peers. “Accept and be open about your HIV status, be confident and believe in yourself.” 

UNAIDS has been supporting ZAPHA+ since its establishment through financial and technical support. UNAIDS supports the ZAPHA+ Secretariat to coordinate its activities in the 10 district clusters to ensure meaningful participation of ZAPHA+ in the development, implementation and review of the United Nations Joint HIV Plan in Zanzibar. UNAIDS also supports its resource mobilization efforts. Other United Nations agencies are closely engaged, in particular the United Nations Children’s Fund.

During a visit to Canada, on 28 November UNAIDS Executive Director Michel Sidibé met with members of the Government of Quebec, members of parliament and civil society at the National Assembly of Quebec.

In meetings with the Quebec Minister of Health, Gaétan Barrette, and the Deputy Minister for International Relations and the Francophonie, Jean-Stéphane Bernard, Mr Sidibé underlined that it is important that UNAIDS’ work be aligned with that of the Quebec Government and stressed the need to tailor the response to HIV in accordance with the needs of the country or region. He also spoke about the urgent need to make HIV prevention more effective and the importance of investing in HIV prevention and reducing the number of new HIV infections.

Mr Sidibé also discussed Quebec’s AIDS response and visited Point de Repères, a community-based organization that advocates for harm reduction. He met with leaders from MIELS-Québec, a community-based organization working for more than 30 years with people living with HIV, and Ruban en Route, a not-for-profit organization providing prevention education programmes designed to reduce sexual risk behaviours.

During meetings with members of Quebec’s Parliament, including with Jacques Chagnon, President of the National Assembly and President of the Parliamentary Assembly of La Francophonie, Mr Sidibé emphasized the important role that parliamentarians play in the global response to HIV. He also stressed that parliamentarians are critical to advancing the vision of ending AIDS by 2030 through their leadership, advocacy role and ability to authorize and oversee spending on AIDS. 

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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.

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UNAIDS Regional Goodwill Ambassador for Latin America and the Caribbean and CNN Anchor Alejandra Oraa visited El Salvador from 9 to 11 August to raise awareness about strengthening HIV prevention efforts for adolescents and young people.

In El Salvador, there is a growing concern about the increase in new HIV infections reported since 2011 among adolescents aged between 15 and 19 years. Young people are not receiving the information they need to protect themselves from HIV: only 36.5% of young people aged 15–24 years know how to prevent HIV transmission.

During her visit, Ms Oraa met with youth leaders in order to analyse gaps in access by adolescents and young people to sexual and reproductive health and HIV-related services and comprehensive sexuality education. Young people stressed the need to urgently accelerate efforts to provide youth with the tools they need to make informed decisions to protect their health, rights and dignity.

Young people also talked about the initiatives in place to contribute to the HIV response from their perspective. For example, to improve access to information and education on HIV and sexual and reproductive health, the National Network of Positive Youth, in coordination with UNAIDS, the United Nations Population Fund and the National Youth Institute, organizes outreach awareness initiatives in public places and schools. Between Friends (Entre Amigos), a community-based organization, uses face-to-face approaches and offers combination prevention options for key populations, including young men who have sex with men and young transgender people.

In El Salvador, Ms Oraa leveraged her social media power to launch a new online survey to assess young people’s knowledge about HIV prevention and transmission. The findings of that United Nations Children’s Fund and UNAIDS joint initiative will be used to inform national public policies and strategies to prevent and reduce new HIV infections among young people. 

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There is a quiet hum in the room from the mostly young men sitting in chairs, eyeing their smartphones and chatting. Suddenly, a cheerful figure bursts into the executive lounge of the high-rise building in Taguig City, Philippines.

“Thank you, thank you,” said Ronivin (Vinn) Garcia Pagtakhan, the Executive Director and Founder of LoveYourself, a community-based organization providing health and empowerment services to men who have sex with men and transgender people. The team were wrapping up after a major event promoting HIV testing.

Mr Pagtakhan, with his shock of brown hair, frosted with a light green tint, bounced from one group to the next, joking and repeating his thanks.

Almost everyone here is a volunteer,” explained Mr Pagtakhan. “I get really moved when I talk about my volunteers. I owe everything to them.”

LoveYourself provides HIV testing and treatment services, as well as oral pre-exposure prophylaxis (PrEP) and tuberculosis screening. It has 25 staff members, who are supported by around 800 volunteers. Mr Pagtakhan founded LoveYourself in 2011, modelling it on a lesbian, gay, bisexual and transgender youth centre he volunteered in while living in San Francisco, United States of America.

“At the time, I felt there was a real problem with the way we were handling HIV prevention among the gay community in the Philippines,” said Mr Pagtakhan. “It was all about fear. I wanted something more optimistic and encouraging. I wanted a place that was lively, where people would want to hang out.”

He was only 25 years old at the time. “As they say, I know my market, because I am part of the community.”

He graduated from nursing school in the Philippines when he was 18 and got the fourth highest score on the national nursing board examinations. “This meant that I was in high demand by other candidates as a teacher helping to prepare people for their licensing exams. I travelled around the Philippines giving classes and I used social media to reach out to students as well,” said Mr Pagtakhan.

He became a celebrity on social media, with 600 000 followers on Twitter, and won the prestigious international Twitter Shorty Awards as the Nurse of the Year. The prize money helped start LoveYourself.

“The first three years, it was like sending your child off to college. I basically supported the organization on my earnings. We didn’t have any donors,” said Mr Pagtakhan. “I like to think out of the box and I had a particular vision. I didn’t want grants to dictate what we did or became. I wanted to create ripples of positive change in the community. LoveYourself isn’t just about HIV, but rather about increasing a person’s self-worth.

The organization has three community centres in the Manila, Philippines, area offering HIV testing and other services. Anyone can drop in, even on the weekends and in the evenings, for free health services.

LoveYourself tested about 20 000 people in 2016 and diagnosed around 1500 new HIV infcetions, which represent around 50% of the newly diagnosed HIV cases reported by the Department of Health in Manila. LoveYourself also works with companies and schools to help them develop HIV policies and to conduct on-site HIV tests.

In July, the organization began piloting PrEP and with support from UNAIDS and the World Health Organization plans to start a demonstration project offering self-testing before the end of the year.

In just six years, LoveYourself has grown to become an important HIV service provider in Manila. Mr Pagtakhan is proud of the organization’s achievements and has bigger ambitions. “We are still renting. I want LoveYourself to own a place, which is a community centre, where we can have health services but also original events and activities,” he said.

For more information on LoveYourself, go to http://www.loveyourself.ph.

Although new HIV infections and AIDS deaths among young people have decreased, in many places knowledge about how to prevent HIV remains worryingly low. Ahead of International Youth Day UNAIDS spoke to four young people about the challenges they face around HIV.

Pavel Gunaev is 16 years old and lives in St. Petersburg, where he is part of the youth-led network of adolescents and young people living with HIV Teenergizer! Pavel said that in his city young people are not aware about HIV.

“AIDS isn't talked about so young people don’t know about the risks or how to protect themselves from HIV,” he said. “As a result, so many uninformed young people are acting and making decisions based on rumors.” Pavel believes that if everyone does more to inform adolescents and young people and dispel the myths around HIV, ending AIDS will be possible.

Chinmay Modi was born with HIV twenty-three years ago. He is a member of the National Coalition of People Living with HIV in India and country focal point for the Youth LEAD Asia Pacific Network.

“The biggest problem is raising awareness and giving young people age-appropriate information,” he said. In his view, parents are not comfortable talking with their children about sex and society shies away from it too. As a result, he explained, young people are engaging in sex and experimenting new things but with little knowledge of the risks involved.

“Condoms need to be promoted and partners should support youth empowerment so that everyone is held accountable,” Chinmay said. He is also frustrated because in India people cannot access stigma-free HIV services at an early age.

In his view, self-stigma is hampering efforts to tackle discrimination, violence and inequalities related to HIV. That’s why, he explained, he wants more people to share their stories and be positive about being positive.

Moises Maciel couldn’t agree more with Chinmay. He is a 20-year-old LGBT and HIV activist. He became a  member of the National Network of Adolescents and Youth Living with HIV/AIDS in Brazil after discovering his positive HIV status two years ago. Since then, he has been on a journey against HIV-related stigma. He has also been motivating his peers to get tested.

“Young people are still at great risk of HIV infection due to a variety of factors such as social marginalization related to gender and racial inequalities,” he said. “In Brazil, young transgender and gay people are particularly targeted,” he explained.

He said that it baffles him to see how stigma and prejudice still dominate despite people living with HIV living healthy lives with the help of antiretroviral therapy. “We should start talking to young people in an open and responsible way about sexuality, sexually transmitted infections, teenage pregnancy and life responsibilities,” Moises said.

Lorraine Anyango, a Boston-based youth health and rights advocate, works to ensure that young people's voices, specifically around HIV, get heard.

“Young people continue to be left out of spaces and discussions on issues that impact their lives,” Lorraine said. “Their autonomy as individual human beings continues to go unacknowledged, leaving them susceptible to the risk of HIV infection.”

In her opinion, young people’s participation in decisions that affect their health can contribute to strengthen national-level accountability, by ensuring that programmes are effectively responding to their needs. Lorraine concluded by saying, “Recognizing youth sexual and reproductive health and rights, and continuing the conversation on HIV will get us closer to ending AIDS by 2030.”

Just an hour before they were expected on stage at the Montreux Jazz Festival, two-time Grammy award winning kora player and UNAIDS International Goodwill Ambassador, Toumani Diabaté and his talented son Sidiki sat down to talk music, diversity, zero discrimination and ending AIDS in West and Central Africa. 

Gentle and thoughtful, Toumani answered the questions with warmth and good humour, and in true global fashion the conversation flowed between English, French and Bambara. There is clearly a lot of respect between father and son as traditions are passed down and innovation encouraged. Their banter was light-hearted as Toumani advised Sidiki to sit up straighter and look into the camera while Sidiki offered more modern takes to his father’s answers.

UNAIDS: You are here to perform with Lamomali, a musical collaboration with French artist Matthieu Chedid. You have more than 15 people with you on stage including the likes of Malian singer Fatoumata Diawara. How did this come together?

Toumani: Part of the griot tradition of historians, storytellers and musicians, I have always wanted to be involved. My fathers, all my family from a 700-year-old dynasty, we come from this atmosphere, we are born into this and we are the archive of culture in our country.

Beautiful music brings people together and breaks down barriers like in Lamomali. The world needs to be more open and be more helpful and we need more communication. That is the only way that things can be better in the future.

UNAIDS: Recently the African Union endorsed a catch up plan for West and Central Africa to accelerate access to HIV services.  What are your hopes for the region? 

Toumani: Clearly, we cannot accept a two-speed approach to ending AIDS in Africa.  We don’t have a moment to lose, we have the tools and must work together to end AIDS.

UNAIDS: Tonight, you are going to wear a red ribbon during the concert. What does it mean to you?

Toumani: Life, it is just life, love and solidarity.

During the high-energy performance, which celebrated both the traditional and the new—Toumani spoke about his role as UNAIDS International Goodwill Ambassador and highlighted the importance of zero discrimination. He shared a proverb from his native Mali:

If you know you do not know, you’ll know.

If you do not know you do not know, you’ll never know.

If you do know, make it known.

This speaks to Toumani’s role both as griot and Ambassador. He knows the importance of celebrating diversity and dignity and making zero discrimination a reality for all. Through his vibrant music and his messages, he is making it known.