When her husband came home with a positive HIV test, Jokapeci Tuberi Cati decided that she wanted to get tested too.

“Fear of the unknown, of the stigma associated with HIV and of rejection were all going through my mind before the test,” she said.

Once she got tested in Lami, Fiji, she sighed and said to herself, “done and dusted.”

But she had a nagging thought that her test would be positive and she started thinking about a coping mechanism. She kept playing over and over the same scenario, with one question: how will she live from this point onward?

“In fact, little happened in reality,” Ms Cati said. She recounted that an experienced doctor treated her with the utmost care when he informed her of her HIV-positive status.

She returned home and decided that she and her husband would bear the diagnosis together as a couple. No one needed to know anything.

With time, Ms Cati learned to cope with her new status and vowed to accept her new life. She now wanted to help people to understand the issue so that they would not go through the same experience.

But first she had to let people know.

“The moment I decided to disclose my HIV status to my family and friends, there was a different magnitude of support,” she said. Thinking back to 20 years ago, she still cannot forget how people reacted with such warmth.

That emboldened her to become much more proactive and share her story with a greater number of throughout the country. She is now a programme manager at the Fiji Network for People Living with HIV. Despite losing her husband, Ms Cati is thankful she found out about her status, because with medication she did not transmit HIV to her children.

“Better to know than not know—the benefits are huge,” she said.

At 17, preparing for her baccalaureate, Francine Nganhale was carefree. She followed her classmates out of curiosity to the local hospital in Yaoundé, Cameroon, since they had heard about an HIV awareness campaign with free testing.

“This was my first time getting an HIV test and I had no expectations,” she said.

When the results came back, her test was inconclusive. She retook the test and at the fourth try, her result was positive. “The explanations given to me throughout the process piqued my interest and I became much more motivated to find out more,” she said.

Ms Nganhale felt scared and she admits being clueless about what to do next. A doctor walked her through the process and gave her a lot of information about HIV. It suddenly dawned on her that her three-year old son, who was often sick, had never been tested for HIV. He tested positive and both started treatment.

The hard part for her was telling her mother. She postponed telling her, but she felt more and more isolated. And she recalls hearing negative comments from her extended family about people living with HIV. “I had decided to challenge myself and live a long and healthy life and no one would deter me,” she said. When her mother finally found out, she told others about her daughter’s HIV status. Regardless, Ms Nganhale forged ahead. She holds no grudges, saying that her mother cared for her and her son financially for years.

As a social worker, Ms Nganhale works mainly with people living with HIV, raising awareness and distributing HIV treatment.

Her husband is also a social worker overseeing 106 Cameroonian HIV associations. He can relate to his wife’s experience. Charles Noussi used to be a professional football player in the Maldives. During a routine team medical check-up, all his teammates underwent a battery of tests. The next day, when he showed up for practice, he bumped into the manager, who forbade him to train with the others.

“I had no clue what was going on,” he said. “Meanwhile I slowly realized that most people were hiding something from me.” He wanted to get to the bottom of it and asked to see the medical team responsible for the check-up. That’s when finally someone told him his HIV-positive status.

“I suddenly realized that I was the last to know,” Mr Noussi said. The news only got worse. He had 48 hours to pack up and leave the country. “Do you know how hard it is to abandon a career I loved and lose my good salary all because of my HIV status?” he asked. “It broke my heart and more.”

A sponsor helped him flee to Thailand, where he accessed health services. “So many people were supporting me and reassuring me,” Mr Noussi said. Quickly, he joined an HIV advocacy group. “After a year, I told myself that perhaps I should use my knowledge and return to my home country,” he said. Again, mentalities differed in Cameroon. He faced discrimination and despite being healthy and open about his HIV status, many of his acquaintances and friends abandoned him.

“Thank goodness my mother helped me a lot, not only on a nutritional level, but also socially and psychologically,” he said.

Two decades later, he believes HIV-related stigma has decreased in Cameroon. HIV treatment is free, unlike many years ago, when he paid for everything himself. No doubt about it, he said, knowing your status is crucial.

His wife agrees. “No need to tell someone not to worry—it's normal to worry,” she said. “What's key is reassuring someone that they are in control of their life.”

Related story: A tribute to Charles Domingo Noubissi

A new website that enables people to identify national laws and policies related to the AIDS response has been launched by UNAIDS.

Covering areas as diverse as a country’s ability to diagnose HIV among young babies, the existence of laws that discriminate against transgender people and whether people are prosecuted for carrying condoms, the Laws and Policies Analytics website aims to give a full overview of a country’s laws and policies related to the HIV response. It also allows to view policy data jointly with other data on the HIV epidemic and response.

“We must better understand legal and policy environments to drive effective responses to the HIV epidemic. This new tool will provide access to data on national laws and policies and allow for joint analysis with data on the epidemic and response, so that we can drive more deeply-informed decision-making,” said Shannon Hader, UNAIDS Deputy Executive Director, Programme.

Under the 2016 United Nations Political Declaration on HIV and AIDS, countries committed to accelerate efforts to significantly increase the availability of high-quality data on HIV. The information used on the new website was reported since 2017 and most recently in 2019 through the National Commitments and Policy Instrument (NCPI), a part of the Global AIDS Monitoring mechanism through which countries report their progress against the commitments they made in the 2016 Political Declaration.

Data were provided by national authorities, civil society organizations and other nongovernmental partners engaged in the AIDS response. Data on HIV-related laws and policies compiled from other external official documents complement the nationally supplied data. UNAIDS carries out a thorough validation of all policy data included to ensure their accuracy. Data will be updated annually.

The website hosts data from over 140 countries. Users can search by country or region through an interactive map or can select a specific topic.

Through making policy data widely available, UNAIDS seeks to promote transparency and an increased use of policy data in analyses of the HIV epidemic and the response to HIV in countries worldwide.

The Laws and Policies Analytics website can be accessed at lawsandpolicies.unaids.org.

Aziwe is 19 years old and lives with her mother, Phatiswa, in an informal settlement called Umlazi, near Durban, South Africa. Both women are living with HIV and both are full of energy, love, hope and optimism for the future.

Aziwe didn’t find out she was HIV positive until she was about 14 years old. She had already been on treatment for five years but her mother had decided not to tell her that she was HIV positive, even while making sure that her daughter stayed healthy by taking her medication every day.

When the doctor asked her if she wanted to know why she had to take medicines so regularly, Aziwe did not hesitate. As she had grown older, so had her curiosity. When the doctor told her that she was living with HIV she broke down. Her mother too.  

Now, five years later, Aziwe is a happy, confident teenager who is highly articulate as she tells the family story to the UNAIDS Executive Director a.i. Gunilla Carlsson ahead of the launch of UNAIDS global report on the state of the AIDS epidemic.

Phatiswa lived in the Eastern Cape in 1999 but, like many women, left to find work as a domestic worker in Durban. She’s good at her job and has been working for the same family for 19 years.

The children stayed behind in the Eastern Cape at first. But Aziwe was a sickly child and came to live with her mother a few years later. In 2009, she became very ill and was rushed to hospital where she would remain for 2 weeks. It was there that she was tested for HIV and found to be positive. Phatiswa also tested positive for the virus.

Today, the women take their treatment and encourage others at community support groups to keep taking their medicines so that they stay well. Aziwe also challenges the stigma and discrimination that still surround HIV and has spoken about living with HIV at a church group. She says there is still too much ignorance about the virus and it sometimes upsets her. But she and Phatiswa support each other.

“I have days where I just want to cry but she speaks to me as a mother. I have good family and friends who are always there for me.”        

Aziwe explains that she values life so much more because she has lost loved ones to AIDS.

“I want to live because there are so many things that I want to achieve in life—for my mother and for myself.”

Like many young people, she wants to travel and later to work as a talk-show host on television. In the future, she wants to have a family of her own.

“I’m just a normal teenager living with HIV,” she explains.

While Botswana has made great progress in reducing the number of new HIV infections—down around 36% in total since 2010—young people remain highly vulnerable to the virus. Adolescent girls and young women are particularly at risk of HIV infection as well as other sexually transmitted infections and unintended pregnancy.

In 2018, almost one in four new HIV infections in Botswana occurred among young women and adolescent girls aged 15-24 years old. Less than half of young women and adolescent girls say they have comprehensive knowledge about HIV.

To see what more can be done to address the issues making young people more vulnerable to HIV, the First Lady of Botswana, Neo Masisi, held a retreat in July to look at the challenges confronting them.       

Young women participating in the retreat shared some of their experiences with the First Lady and officials from the Ministry of Health.       

“I come from a strained family structure where poverty is rife. I never felt loved at home and looked for love outside. I got a boyfriend and eventually I too became a teenage mother,” said Belinda.

The discussions at the retreat will feed into a framework for the development of a national flagship programme for young people.

“Today’s young people are dealing with multiple challenges and they have to take on so much—at school, within changing family dynamics, societal expectations. They question their norms, values and their own worth,” said Ms Masisi. “We need to treat them as leaders so that they can feel valued.”                

The Minister of Health, Alfred Madigele, said further consultations would be held with young people to produce the framework.

Earlier this year, the UNAIDS Executive Director a.i., Gunilla Carlsson, appointed Ms Masisi as UNAIDS Special Ambassador for the empowerment and engagement of young people in Botswana.      

Zarah Ali (not her real name) remembers how things changed for the better. “In 2014, I received a loan of 40 000 Djiboutian francs (US$ 250) that I used to develop and improve my garment business. I was also trained in business entrepreneurship, including marketing and customer satisfaction. I import clothes from Dubai and Somaliland and earn a decent income that helps me support my 25-year-old son, my 16-year-old daughter in secondary school and my three-year-old adopted son. I am able to pay for my rent, electricity and water and have decent meals.”

Ms Ali’s loan came from an income-generation programme established by the World Food Programme in collaboration with the United Nations Development Programme, UNAIDS and the national network of people living with HIV in Djibouti (RNDP+). The programme supports the long-term empowerment of, and provides regular incomes to, women living with HIV in Djibouti City. It helps them to achieve financial security and have access to food and improves their access to health-care services. Income-generating activities such as those supported by the programme have a powerful potential to help people living with HIV adhere to antiretroviral therapy and optimize health outcomes. 

The loans, ranging from US$ 141 to US$ 438 per person, are for starting or building retail businesses. The beneficiaries, who are selected from among two networks of people living with HIV affiliated to RNDP+ (ARREY and Oui à la Vie – Yes to Life), also receive training on how to run their business. Government support in the form of favourable policies and legislation has been vital to the success of the programme. 

Dekah Mohammed (not her real name) now lives a fulfilling life after receiving help from the income-generation programme. Ms Mohammed, who lost her husband to AIDS, lives with six children. After she lost her job in the hospitality sector owing to her deteriorating health and to stigma and discrimination, she started her own clothing business and received a loan of 50 000 Djiboutian francs (US$ 313) to expand her business. The loan was repaid within 10 months. Her business has since expanded into furniture and electronics and she has recruited an employee. “I am no longer a desperate woman. I make enough to take care of my family and dependants,” she said. 

The programme has improved the quality of life of many Djiboutian women, allowing them to regain dignity and ensure their financial security. It empowers women and girls to protect themselves from HIV, make decisions about their health, live free from violence and be financially independent. 

Building on the belief that empowering women living with HIV and their households to be financially independent strengthens adherence to treatment and leads to more fulfilling and dignified lives, the programme contributes to the World Food Programme’s broader strategic contribution towards ending AIDS as a public health threat by 2030.

A communiqué adopted at the High-Level Pan African Summit on HIV and Health Financing has called for parliamentarians to ensure the right to health for all and for stronger advocacy to increase domestic resources for HIV and health.

“There is an urgent need for our governments to mobilize domestic resources to ensure sustainable and affordable access to HIV treatment, for all, to ensure that all women have the same chances as I did to raise HIV-free and healthy children,” said Valerie Maba, President of the national network of HIV-positive organizations of the Congo.

Roger Nkodo Dang, the President of the Pan-African Parliament, highlighted the urgency of finding durable sources of financing to respond to HIV and to improve public health services in Africa.

Significant increases in both domestic and international funding have enabled African countries to rapidly expand their HIV programmes in recent years. In 2018, 16.3 million people living with HIV were on antiretroviral therapy in sub-Saharan Africa, representing 70% of the total number of people on antiretroviral therapy globally. At the end of 2017, about US$ 21.3 billion was available for HIV programmes in sub-Saharan Africa, with domestic investments accounting for approximately 56% of total resources.

Countries were also encouraged in the communiqué to further contribute to global solidarity in the upcoming replenishment of the Global Fund to Fight AIDS, Tuberculosis and Malaria. “Today, we are honoured to be among you and we salute the efforts of 11 African member states that have already stepped up and pledged,” said Marijke Wijnroks, Chief of Staff of the Global Fund.

In 2001, the heads of state of the African Union committed, through the Abuja Declaration, to allocate at least 15% of national budgets to health care in order to achieve universal health coverage. However, the share of expenditure allocated to health in national budgets in Africa has in fact decreased, and in 2018 there was a gap of US$ 5 billion for the AIDS response, and only two out of 55 African Union member states complied with the Abuja Declaration targets.

In February 2019, African Union member states reiterated their commitment to increase domestic resources for health on the sidelines of the 32nd Ordinary Session of the Assembly of Heads of State and Government through the Declaration of the Investing in Health Africa Leadership Meeting.

“Ending AIDS by 2030 is a Sustainable Development Goal and an aspiration of Agenda 2063. Controlling the epidemic is a prerequisite for sustainable results. If our governments do not Fast-Track and ensure the financial sustainability of the response, the socioeconomic and human burdens will get worse,” said Clémence Bare, Director of the UNAIDS Liaison Office to the African Union.

Held under the auspices of Denis Sassou Nguesso, the President of the Congo, and convened by UNAIDS, the Pan-African Parliament and the Regional Office for Africa of the World Health Organization, the summit was held in Brazzaville, Congo, on 11 and 12 July.

Indonesia has decided to pilot pre-exposure prophylaxis (PrEP) in four cities with high levels of HIV prevalence. PrEP is a way for people who do not have HIV but who are at substantial risk of getting it to prevent HIV infection by taking a pill every day. It is hoped that the pilot project will pave the way for a wider roll-out across the country.

The commitment to piloting PrEP came during the 1st Indonesian Symposium on PrEP, which was organized by UNAIDS at the end of June. The two-day event brought together around 150 clinicians, public health officials and representatives of key populations, who shared their experiences of PrEP research and implementation strategies across the Asia-Pacific region. The pilot in Indonesia will be conducted in close collaboration with the Ministry of Health. 

PrEP is a highly effective prevention choice for people who are at high risk of HIV infection such as sex workers, people who use drugs and gay men and other men who have sex with men. It is having a big impact in reducing new HIV infections in Australia and its availability is increasing in New Zealand, Thailand and Viet Nam. China, India, Malaysia and Philippines have also initiated pilot projects.      

Prevention efforts are vital to strengthening the HIV response in Indonesia and PrEP would be a significant addition to the country’s combination prevention approach. Indonesia had 46000 new HIV infections in 2018 and has one of the fastest growing epidemics in the Asia Pacific region. In 2018 there were 640000 people living with HIV in the country and only 17% had access to treatment.

The discussions at the symposium helped to disperse some of the common misconceptions regarding PrEP, both among communities and services working to reduce new HIV infections.     Civil society activists expressed their strong support for PrEP roll-out.

“PrEP will become a necessity for sex workers,” said Rito Hermawan of the Indonesian Sex Workers Network, “As well as using condoms, they can get additional protection by using PrEP. We must educate people about PrEP to stop any misconceptions.”        

Other civil society activists echoed their support.

“The more I learn about the benefits of PrEP, the more I wonder why it is not available here,” said Mr. Riunaldi from Intermedika Prana Foundation, “I am hopeful that more people will understand how important PrEP is for our country.”

Participants in the symposium said that many people were already accessing PrEP online, indicating a growing demand in Indonesia.

“It is incumbent on policy makers, health professionals, researchers and civil society organizations to ensure that those at risk of HIV infection have access to the information and resources needed to make informed decisions regarding their health” said Tina Boonto, UNAIDS Country Director for Indonesia. 

Laws discriminate in many ways, but the criminalization of people is one of the most devastating forms of discrimination. Despite calls for reform and the commitments under the 2030 Agenda for Sustainable Development to remove discriminatory laws and reduce inequalities:

• Sixty-nine countries still criminalize same-sex sexual relationships.
• More than 100 countries criminalize drug use or the personal possession of drugs and 98 countries criminalize some form of sex work.
• One in five people in prison are there because of drug-related crimes and 80% of those are there for personal possession or use.
• Nineteen countries deport non-nationals on the grounds of their HIV status.

A high-level political forum is meeting in New York, United States of America, from 9 to 18 July to review the progress made against the commitments of Member States towards achieving the Sustainable Development Goals, including those on inequality and on peace, justice and strong institutions.

“As a judge, I have seen the effect that criminal law can have on communities. It takes people outside systems of protection, declares their actions or identity illegitimate, increases stigma and excludes them from any protections our judicial, social and economic systems may provide,” said Edwin Cameron, Justice of the Constitutional Court of South Africa.

Criminalization affects access to health services, housing, education, social protection and employment. The criminalization of same-sex sexual relationships, sex work or drug use prevents people from accessing health-care services, including HIV prevention, testing and treatment. Data show that gay men and other men who have sex with men are 28 times more at risk of HIV than the general population, people who inject drugs are 22 times more at risk and sex workers and transgender women are 13 times at risk. 

“To fully implement the Sustainable Development Goal agenda and make sure that no one is left behind, we need to ensure the laws are protecting people from discrimination and not pushing people into hiding from society,” said Lloyd Russell Moyle, United Kingdom Member of Parliament.

Groups that represent criminalized people are often barred from registering as nongovernmental organizations, and, for example, sex workers often can’t unionize. Propaganda laws may mean that information on, for example, HIV prevention can’t be disseminated.

“Ending AIDS and meeting the health-related Sustainable Development Goals targets will not be possible without addressing discrimination, violence and exclusion. We have an opportunity to harness the lessons from the AIDS movement and place rights and the meaningful participation of the most marginalized at the centre of the response,” said Luisa Cabal, Director for Human Rights and Gender, UNAIDS.

Criminalized groups often experience higher rates of violence than the general population. Victims of violence who are also criminalized often can’t report crimes against them to the police, and lawyers risk violence and other repercussions if they take up their cases.

“Discrimination against and criminalization of people living with HIV still continues to this day. And we are facing in Indonesia persistent stigma against and criminalizing of key populations. We will never end AIDS if we are not making their needs and rights a top priority for access to health care, protection against violence and realization of the right to health,” said Baby Rivona, from the Indonesian Positive Women Network.

Countries that decriminalize drug use and make harm reduction services available have seen reductions in new HIV infections. Evidence shows that decriminalizing sex work could avert between 33% and 46% of new HIV infections among sex workers and clients over 10 years. However, reductions in new HIV infections are not the only outcome—other outcomes include improvements in well-being and trust in law enforcement, reductions in violence and increased access to health-care and support services. Above all, however, decriminalization of people results in them no longer being seen as criminals and stigmatized by society.

A study undertaken by Watipa and commissioned by UNAIDS and the PACT as part of its #uproot agenda found that young people play an essential role in demand creation, linkages to care and uptake of services for HIV and sexual and reproductive health and rights.

The report showcasing the results, titled Young people’s participation in community-based responses to HIV: from passive beneficiaries to active agents of change, showed that young people, particularly role models and leaders who are living with HIV, play a critical part in enabling access to HIV treatment and retention in care. The results showed that the support provided by young people to their peers has a positive effect on antiretroviral therapy adherence, navigating disclosure and living positively with HIV. Details of the types of support show that young people are actively involved in peer psychosocial support, peer-to-peer consultations, policy engagement processes, peer mobilization around specific campaigns and projects, and peer-supported hospital and care access.

Young people, including young key populations and young people living with HIV, also play a key role in primary HIV prevention, early testing and diagnosis. Peer education, outreach and community engagement are all areas where young people are informing and influencing their peers. In some examples, young people working as peer supporters and volunteers provided HIV testing and counselling services, distributed condoms or worked alongside community-based health assistants.

62% of surveyed individuals who were members of a youth organization in the HIV response indicated that they themselves provide HIV services directly to young people. These were services designed to benefit and reach young people as the focus groups. The provided services include information about sexual and reproductive health and rights (51%), peer support (50%), psychosocial support (42%), condom promotion and distribution (41%), antiretroviral therapy adherence support (32%) and HIV counselling and testing (30%). Many of the organizations surveyed offered integrated services, including referrals, prevention, and testing and treatment of other sexually transmitted infections (STIs) (38%), tuberculosis (28%) and/or hepatitis B and C (22%).

As one key informant mentioned, “It’s easy to disseminate the knowledge among ourselves, because if [I] am part of it, then it’s easier to talk to somebody of my age about it.”

The primary data was collected through three methods: 1) an online quantitative survey with 32 questions that was offered in five languages (Arabic, English, French, Russian and Spanish), peer interviews, which were semi-structured qualitative interviews conducted by young people in either English or their local language in six different countries, and key informant interviews, which were semi-structured qualitative interviews conducted in English via Skype by two young consultants leading the research team. The total number of participants was 143, between the ages of 20 and 29.

The role of young people in community-based responses to HIV is vital to achieve and sustain positive health outcomes in the context of HIV. One key informant said that “Young people living with HIV are changing the game in the community. They are peer educators, mentors . . . they support other young people at health facilities to direct them about services to make the process swifter for them while receiving services. Many young people are involved in advocacy where they speak for the voices of [the] young.”

However, the lack of appropriate or proportional remuneration for the role of young people in demand creation and enabling linkages to care seems to be a critical barrier to the sustained, effective and meaningful involvement of young people. Other barriers inhibiting their participation included a lack of funding for institutional support, a lack of capacity or support for the knowledge necessary to participate fully in technical discussions, and a lack of tailored tools and resources to support participation in different processes and mechanisms.

The study also provides thirteen recommendations from the young people who participated in the research, and are aimed at government authorities, United Nations entities, donors, civil society organizations and other stakeholders in the HIV response. These recommendations include the need to involve young people in design, planning and delivery of HIV policies, programmes and services as well as recognize the essential role that young people have in implementing service delivery to their peers.