For six weeks, two teams covered 12 HIV clinics on a data checking mission in Papua New Guinea. UNAIDS joined the country’s strategic information technical working group in the National Capital District, which includes Port Moresby, to inspect the clinics’ records to see if they match the records of the National Department of Health.

“The data quality assessment is part of the country’s HIV monitoring and evaluation plan to ensure the quality of data and reporting of the AIDS response,” explained Zimmbodilion Mosende, UNAIDS Papua New Guinea Strategic Information Adviser.

Led by USAID, the two teams of 12 branched out into smaller teams to look at the number of people registered as enrolled on antiretroviral therapy, the number of people newly starting treatment, the percentage of people returning for refills and the number of people who did not return to the clinics. In addition, the groups checked information on, for example, the age and sex of each person.

The volunteers from civil society groups, international nongovernmental organizations, development partners and key government offices went through the records of nearly 5000 people.

Papua New Guinea has the highest HIV incidence and prevalence in the Pacific region. The country of 8.4 million people represents 95% of the reported HIV cases in the region. There are approximately 45 000 people living with HIV in the country, of whom 65% are on antiretroviral therapy.

The groups tried to find out if there are discrepancies in the data and the reasons behind them. Albert Arija, Monitoring and Evaluation Specialist of USAID, described the reasons for discrepancies, which range from there being an inadequate number of staff, hence not enough time to fill out all entries, to incorrect data entry or at times misinterpretation of information. For fear of stigma and discrimination, some clients don’t want to give personal information.

One key missing data point was also birthdates. “Many people in Papua New Guinea cannot recall their exact date of birth,” said Mr Arija.

The technical working group is advocating for the use of electronic forms and real-time reporting. “Since the current antiretroviral therapy forms are still paper-based, there are several potential data quality risks, including human errors, from the data entry and processing,” Mr Mosende said.

Overall, most of the clinics had good quality data and processing, according to the teams’ assessment. They hope to simplify the overall process to scale up the data check for the whole country.

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.”

It is a morning like any other at the Thai Red Cross AIDS Research Centre, a civil society organization operating under the umbrella of the Thai Red Cross Society. In a building in the heart of Bangkok, nurses, doctors, counsellors and peer educators are busy with their daily work, providing HIV services for the 200 people who attend the Thai Red Cross Anonymous Clinic every day for medical check-ups, HIV tests and HIV prevention services, including condoms and pre-exposure prophylaxis (PrEP).

When he was 35 years old, Praphan Phanuphak―the Director of the centre, which he co-founded in 1989―discovered the first case of HIV in Thailand. “It happened by accident. A patient was referred to me to investigate why he had a recurrent fungal skin infection,” he recalled. “In February 1985, this patient was admitted with pneumocystis pneumonia. During that month, another man was referred to the hospital with generalized cryptococcus infection. Both were diagnosed with HIV. Since then, I have devoted my life to treating people living with HIV and developing solutions to expand access to HIV services in the country.”

Mr Praphan remembers that in the early days of HIV the response in Thailand faced several challenges. At the time, Thai law required hospitals to report the names of people diagnosed with HIV to the Ministry of Public Health, which contributed to increasing stigma and discrimination against people living with HIV. In response, the Thai Red Cross established the Thai Red Cross Anonymous Clinic, Asia’s first anonymous clinic, and advocated with the Thai Government to remove the reporting law. The Anonymous Clinic remains the most renowned centre providing voluntary HIV testing in the country.

“Until the beginning of 2000, antiretroviral medicines were not available through public health facilities in Thailand, and many people living with HIV could not afford to buy them,” said Mr Praphan. He said that in 1996 the Thai Red Cross AIDS Research Centre was the first to provide free antiretroviral medicines as part of its clinical trials through the HIV Netherlands–Australia–Thailand Research Collaboration.

“After years of despair, a time of hope finally came. For that, I want to thank Her Royal Highness Princess Soamsawali, who stood by our side by setting up a fund for the prevention of mother-to-child transmission of HIV in 1996, several years before the Thai Government started its successful prevention programme,” said Mr Praphan.

The AIDS response in Thailand has changed dramatically over the years. In 2006, Thailand integrated its HIV services, including antiretroviral therapy, into its universal health coverage scheme. Since 2014 Thailand has provided antiretroviral therapy for all regardless of their CD4 level. Everyone can access treatment for free, and people living with HIV are offered treatment immediately after diagnosis.

However, many people are starting antiretroviral therapy late. “We have the medicines, but many people are not being diagnosed fast enough,” warned Mr Praphan. Despite tremendous progress, the HIV epidemic is not yet over in Thailand. HIV remains concentrated among key populations: almost 50% of new HIV infections in 2018 were among gay men and other men who have sex with men. Low uptake of HIV testing among key populations is related to the acceptability of services and stigma and discrimination, which hinder access to HIV diagnosis, prevention and care.

“From our experience, helping key populations to reach their peers and bring them to HIV drop-in centres, where they can be tested, is the best way to detect and diagnose people living with HIV early enough,” said Mr Praphan, who successfully advocated to amend Thai law to allow certified lay providers from key populations to provide a number of HIV services.

The Thai Red Cross AIDS Research Centre’s approach focuses on undertaking pilot projects to generate evidence to inform national planners and policymakers. That evidence provides a foundation for national acceptance and the roll-out of innovation on a national scale.

Taking the lead in reaching out to key populations, the centre has been offering PrEP to people at substantial risk of HIV since 2014 through projects such as the Princess PrEP Programme. In October 2019, Thailand introduced PrEP under its universal health coverage benefits package as a pilot phase in efforts to scale up PrEP nationwide.

Mr Praphan believes that policymakers and programme implementers should understand that, “We cannot continue to do business as usual. In Asia and the Pacific, several countries are still either sceptical or conservative in terms of promoting the necessary approaches to change the course of the HIV epidemic.” He thinks that the region cannot achieve the 90–90–90 targets by 2020 at the current pace. “We need to think out of the box and look at what other countries are doing that can be taken as a model. This is how we can move faster on our way towards ending AIDS as a public health threat.”

This piece was first published in Global Cause, a Mediaplanet website that publishes information and personal insight stories reflecting the health, wealth and well-being of our world

For young women and girls, for marginalised, vulnerable groups of people such as gay men and other men who have sex with men, transgender people, sex workers, people who use drugs, prisoners and migrants, the pathway to health is not always as clear-cut as it should be.

Stigma and discrimination, repressive laws, ignorance and even hate, can all prevent vulnerable people from accessing life-saving prevention, treatment and care.

Communities are fighting for HIV services

This is where communities often step in. Communities of people living with HIV, of marginalised and vulnerable groups, of women and of young people, lead and sustain the delivery of peer-to-peer HIV services. They also defend human rights and advocate for access to essential services. They fight every day to keep people at the centre of decision-making and implementation and help to make sure that no one is left behind.

Women and girls are the backbone of care support in their families and communities, providing unpaid and often undervalued work in caring for children, the sick, the elderly and the disabled. They often underpin fragile social support systems. The involvement and leadership of women is vital in the response to HIV and we must support them to leverage their potential.

Community-based services often support fragile public health systems by filling critical gaps; they are led by, or connect, women and other marginalised populations; they provide services that complement clinic-based care and they extend the reach of healthcare to groups that would otherwise fall through the gaps.

Reduced funding is a barrier to HIV

At a time when reduced funding is putting the sustainability of HIV services in jeopardy, community activism remains critical. Indeed, a greater mobilisation of communities is urgently required and barriers that prevent them delivering services and seeking funds must be dismantled. Communities must have the space and power to voice their demands and write their own solutions.

In 2016, world leaders signed the United Nations Political Declaration on Ending AIDS, which recognised the essential role that communities play in advocacy, participation in the coordination of AIDS responses and service delivery. Moreover, they recognised that community responses to HIV must be scaled up and committed to at least 30% of services being community-led by 2030.

Most countries are nowhere near reaching that commitment and where investment in communities is most lacking, there is often weaker progress against HIV and other health challenges.

Communities stand ready to play their part in building healthier and more resilient societies, but they need our support. On World AIDS Day, let’s celebrate communities, recognise the essential role they play in the response to HIV, and commit to meeting the promises made to them.

Gunilla Carlsson, the UNAIDS Deputy Executive Director, Management and Governance, commemorated World AIDS Day in Brussels, Belgium, celebrating the power of communities with civil society and Barbara Trachte, the Secretary of State of the Brussels-Capital Region.

Ms Carlsson presented some of the key messages from Power to the people, UNAIDS’ new report, which shows that when people have the power to choose, to know, to thrive, to demand and to work together, lives are saved, injustices are prevented and dignity is restored.

“The AIDS response shows that when communities are empowered and have agency, change happens. Now more than ever we need a fully funded community-led response,” said Ms Carlsson.

She thanked the Regional Government of Brussels and the Federal Government of Belgium for its support for people living with HIV and the organizations working on HIV and related sexual and reproductive health and rights. For many years, Belgium has invested energy and resources to meet the needs of the most vulnerable and communities affected by HIV around the world, with a strong focus on human rights, gender equality, key populations, strengthening health systems and sexual and reproductive health and rights.

"Today, on 1 December, it is important to reinforce that undetectable = untransmittable in order to change society’s view of people living with HIV,” said Thierry Martin, Director of Plateforme Prévention Sida.

During her visit to Belgium, Ms Carlsson also met with the Minister-President of Flanders, Jan Jambon, and signed a new two-year partnership agreement with UNAIDS. Flanders has been a valued and prominent partner since the founding of UNAIDS and has invested energy and resources to meet the needs of communities affected by HIV, with a focus on vulnerable populations and girls in southern Africa.

Mr Jambon expressed confidence in renewing the long-term partnership agreement with UNAIDS. “Since its inception, UNAIDS has been working towards a multisectoral, rights-based and people-centred approach that addresses the determinants of health and well-being for the AIDS response, especially the most vulnerable populations, including the LGBTQI+ communities, and this is now more relevant than ever,” he said.

Mr Jambon also welcomed the reforms within UNAIDS to reinforce a positive workplace culture. “I am confident that with the new policies in place and the new leadership, this will enable staff to deliver at their best and maximize their collective results,” he said.

Ms Carlsson also attended a panel discussion with members of the parliament and representatives of civil society and the United Nations, where she provided an update on the status of the HIV epidemic and response, highlighting key actions for support by the European Parliament and European Union. She emphasized the important role that parliamentarians play in the global response to HIV.

Communities played a central role in the commemoration of World AIDS Day in South Africa, which was held in the rural community of Orkney, in the North West Province.

At the invitation of the Government of South Africa, the UNAIDS Executive Director, Winnie Byanyima, commemorated her first World AIDS Day as UNAIDS Executive Director in the local community. Ms Byanyima paid tribute to the role of communities in the AIDs response, including communities of people living with HIV and communities of women, girls and others at higher risk of, or affected by, HIV.

Ms Byanyima told the audience of several thousand people that it was an honour to mark World AIDS Day in South Africa—a country that was late to respond to HIV but that had made huge strides over the past decade and now had more than 5 million people on treatment. She noted, however, that there was still a long way to go, especially to protect women and girls.

“Enough is enough. All women and girls must have the right to choose if they have sex and with whom, and how they protect themselves. We need to bring power, equality and agency to all young women and girls,” she said.

Ms Byanyima said we must never accept that people living with HIV are still dying of AIDS. “It is not a question of science. It is a question of inequality, powerlessness and exclusion. The system is still failing for those who are marginalized,” she said.

South Africa’s Deputy President and Chair of the South Africa National AIDS Council, David Mabuza, told the World AIDS Day event audience that South Africa’s AIDS response had succeeded thanks to the work of communities and the contributions of activists and development partners.

“We could not achieve this without partnerships and support from our global partners,” he said. “That is why we must appreciate the contribution of the global campaign by UNAIDS that has galvanized political leadership, civil society and the private sector into coherent action. Community action remains an important pillar in making change happen, and in shaping the policy agenda and outcomes.”

He noted that there was still much work to be done, including intensifying HIV prevention and tackling contributing factors, including providing comprehensive sexuality education and ending gender-based violence.

Mr Mabuza also said he was pleased to be joined by Ms Byanyima. “She is an activist of note and a distinguished advocate for human rights and development,” he said.” We have no doubt that her vast experience in political leadership and human development will take us forward in the struggle to end the AIDS epidemic.”

In the days prior to the World AIDS Day commemoration, Ms Byanyima met with political and civil society leaders, women activists and others to hear their concerns and understand the challenges and opportunities facing South Africa.

She also visited a clinic in Soshanguve, outside Pretoria, to see in action the project Ritshidze (“saving our lives”), which aims to improve the quality of HIV and tuberculosis service delivery in South Africa by empowering people living with HIV to monitor the health services they receive and to advocate for changes needed. The project is funded by the United States of America with support from UNAIDS.

"We can spend billions building beautiful clinics to distribute millions of pills,” Ms Byanyima said. “But only if we empower communities at the grass roots to hold service providers accountable and call out injustices will we make a real difference for people."

Juliana Atieno volunteers in her local health facility as a mentor mother, providing advice and support to pregnant women newly diagnosed with HIV. She is also a passionate advocate for survivors of gender-based violence and works to ensure that they receive the support and care they deserve, including by linking them to HIV prevention and treatment services. 

Ms Atieno, who is 29 years old and a survivor of gender-based violence, was diagnosed with HIV as a teenager, in 2008, when she was already very ill. She was linked to treatment immediately and today she is healthy and the mother of two young boys, aged two years and nine years, both born free of HIV. Her partner is also HIV-negative. The family lives in the Kiambiu informal settlement, near Nairobi.

On the eve of the launch of UNAIDS’ new report, Power to the people, Ms Atieno told the UNAIDS Executive Director, Winnie Byanyima, how much her work means to her.

“I love my work encouraging young women and girls to get tested for HIV, to take treatment if they need to and to adhere to it so that they can stay healthy and give birth to babies free of HIV,” she says. “I tell them not to worry, that if I made it through, then they can too.”    

Women and girls like Ms Atieno are the backbone of care support in their families and communities, providing unpaid and often undervalued work in caring for children, the sick, the elderly and the disabled and underpinning fragile social support systems. The involvement and leadership of women like Ms Atieno is critical in the response to HIV.  

“Whenever I meet women like Juliana, I am moved and inspired by their courage and resilience,” said Ms Byanyima. “It’s clear that when women like Juliana have power and agency, real and positive change flows to their families and to their wider communities.”

Ms Byanyima’s meeting with Ms Atieno coincided with the beginning of the 16 days of activism campaign against gender-based violence.