People living with HIV

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.

N.C. Cho started feeling run down, with muscle aches and a high fever, in 2014. At the time, he was 32 years old and working in the fashion industry in Seoul, Republic of Korea.

“I went to several hospitals, but nobody could come up with a diagnosis,” said Mr Cho. “Finally, I went to see a third doctor, who did a whole series of tests.”

Little did he know that among the battery of blood work, he was also being tested for HIV.

“I was really angry when the doctor came back and told me I had HIV,” said Mr Cho. “I was educated enough to know that such tests should not be conducted without my consent. “The doctor basically told me you may be able to stay healthy, but you could also get very sick, lose a lot of weight and then die. He gave me some medicine for a cold and made it pretty clear that I should not come back.”

Mr Cho was active in Seoul’s gay community and could turn to peers who introduced him to quality HIV services. He was able to access HIV treatment shortly after his diagnosis and is now feeling fine.

A new survey conducted by the Korean Network of People Living with HIV/AIDS (KNP+) finds that Mr Cho’s experience is far too common for people living with HIV in the Republic of Korea. The Korean People Living with HIV Stigma Index, which is the first peer-led survey in the country to detect and measure how HIV-positive people experience stigma and discrimination, was released on 22 June. Its development was supported by the Global Network of People Living with HIV, the International Community of Women Living with HIV and UNAIDS.

The survey, which was conducted from March to June 2016, found that 62% of people questioned reported that they were tested for HIV without their knowledge. This is high compared to other countries in Asia that have conducted similar peer-led surveys. In Viet Nam, 13% of people living with HIV reported similar experiences and in Nepal the figure was 9%. In addition, 17% of people surveyed in the Republic of Korea said their status was disclosed by medical staff to others without their consent.

“For too long, the voices of people living with HIV have been absent in policy-making,” said Son Mun Soo of KNP+. “This study documents their experiences and shows that the government, employers, health-care workers and communities must do much more to guarantee the rights of people living with HIV. A comprehensive anti-discrimination law must be enacted to protect their rights.”

UNAIDS and the World Health Organization strongly recommend that HIV testing only be undertaken with a person’s informed consent.

“Health-care settings should be stigma-free environments that ensure people living with HIV not only stay healthy, but their loved ones and community are also protected from HIV,” said Steve Kraus, Director of the UNAIDS Regional Support Team for Asia and the Pacific. “It is imperative that we have protective laws and empowered communities.”

The study found that while the general level of education of survey respondents was slightly higher than that of the general population, their employment was more precarious. Only 43% of respondents were full- or part-time employees and 42% were living on less than the Republic of Korea’s minimum household income. About one in 10 respondents who were full- or part-time employees said they had disclosed their HIV status to their employer and about half reported discriminatory reactions.

The survey found that while most respondents disclosed their HIV status to their families out of a sense of obligation, almost 40% reported isolating themselves from loved ones because of their HIV status. Self-stigma was also high among respondents, with 75% feeling self-blame and more than a third experiencing suicidal thoughts.

As the first research of its kind into the stigma and discrimination experienced by people living with HIV in the Republic of Korea, KNP+ views the Korean People Living with HIV Stigma Index as a positive step forward to ensuring that the rights and needs of people living with HIV are protected and met. The study calls for more research on how to strengthen anti-discrimination protection in the workplace and demands training for health-care providers that emphasizes the rights of patients, as well as strong measures and penalties to prevent patient privacy violations.

Mr Cho participated in the study as a peer educator and found the experience empowering.

“There is a lot of self-stigma among people living with HIV,” said Mr Cho. “So I try to portray a positive outlook. I want others to feel positive about their life and to know that they can be HIV-positive but continue to live their life to the fullest.”

UNAIDS is working to empower people living with, at risk of and affected by HIV to know their rights and to access justice and legal services to prevent and challenge violations of human rights.

Young people living with HIV have, with support from UNAIDS and youth leaders, begun an innovative and unprecedented partnership to strengthen South–South collaboration between networks of young people living with HIV in Latin America and the Caribbean and in Africa.

Young people living with HIV in both regions have for a long time organized in national and regional networks to advocate for increased access to HIV services. Now, through a new joint initiative called the 10 Questions Project, they will assess the organizational, advocacy and outreach capacities of networks of young people living with HIV globally, using social media tools, online surveys and in-depth interviews.

Through the initiative, lessons will be learned from each region’s ongoing efforts and from how young people living with HIV in each region participate in the AIDS response. The 10 Questions Project will outline and commit to common advocacy strategies and identify solutions to the challenges faced by young people living with HIV. The assessment will aim to better inform partners and key stakeholders, including donors, on investment choices for strengthening networks and organizations of young people living with HIV.

This joint effort between regions aligns with #uproot, a recently launched youth-led political agenda to end AIDS by 2030, which highlights the need to innovate and reinvigorate partnerships within the youth movement working on HIV, including between youth networks from countries in the global South.

UNAIDS is working to ensure that the world keeps its commitment made in the United Nations Political Declaration on Ending AIDS that 90% of young people have the skills, knowledge and capacity to protect themselves from HIV and have access to sexual and reproductive health services by 2020.

A campaign to support children and families affected by HIV in Kyrgyzstan was launched in Bishkek, Kyrgyzstan, on 1 June, the International Day for Protection of Children.

A key part of the campaign is responding to the stigma and discrimination often faced by people living with HIV, especially children and families. Despite national HIV awareness programmes in Kyrgyzstan and legislation protecting the rights of people living with HIV in the country, many live in fear, hiding their HIV status even from their relatives.  

During the development of the campaign, artists met with teenagers and families who are affected by HIV-related discrimination. The artists, including the UNAIDS Goodwill Ambassador for Eastern Europe and Central Asia, Vera Brezhneva, and popular Kyrgyz singers Abir Kasenov, Arsen, Aiganysh Abdiyeva, Bayastan, Erkin Ryskulbekov and Ayim Aylchieva, voiced the thoughts and words of those children in a moving video, which has been promoted through social media networks and broadcast on national television.

GRASSROOT HERO SERIES
UNAIDS brings you stories of people on the ground bringing about change in the AIDS response. We thank them for being unsung heroes. AIDS is not over, but it can be.

A gaggle of girls shuffle into Florence Anam’s office for their monthly mentoring chat. She has put out snacks and assembled chairs in a circle. To get the conversation started, she asks the 16 girls to describe their happiest memory and their saddest moment and what their actions were at both of those times. A few describe their carefree childhoods and their world crumbling when they found out they were living with HIV.

Ms Anam, who works for the International Community of Women Living with HIV in Kenya, sees a pattern after about five responses and asks, “Who has felt so low that they wondered if they could carry on?”

Fifteen of the 16 girls raise their hands.

“I am so disturbed to see how young people are so depressed and how this will affect them in their adulthood,” she says. “We need to give our kids a reason for living.”

Her determination is deeply rooted.

Eighteen years ago, at the age of 19, Ms 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,” Ms Anam said. “Sex was a taboo topic and not a discussion that parents had with their children.”

Her mother took her to a clinic, and she describes being stared at. At the time, she thought the doctor was probably wondering how such a young woman could be pregnant, but she now thinks they were hiding things from her.

“The health system, I believe, was not equipped to deal with young people like me at the time. I remember the staff talked to my mother more than me,” Ms Anam says.

Ms Anam thinks the doctors informed her mother that she was HIV-positive, although they didn’t tell Ms Anam that she was. She recalls her mother telling her to stop breastfeeding her baby son, although the teenage girl just thought it was because she had to go back to school, which she did seven days after delivering her baby.

In 2006, during a national Kenyan HIV prevention campaign, she and four other friends went to get tested. “I wanted to prove people wrong and wanted to just come out of that testing centre and scream I was HIV-free,” she says. When the HIV tests confirmed she was living with HIV, she was shocked.

Ms Anam says the real impact of her HIV-positive status came a year later, when she needed to get an HIV test to qualify for health insurance at a new job. The day the results came back, she had a termination letter on her desk.

“It hit me that I would not achieve my dreams, I felt really sad that all the dreams my parents had for me could not come to pass because I was not going to be able to work,” Ms Anam says. “I sank into a hole.”

She stopped socializing, distanced herself from her family and felt utterly lost and angry.

“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 Ms Anam.

The woman, Asunta Wagura, happened to be the Director of the Nairobi-based Kenya Network of Women with AIDS. Ms Wagura asked her to come in and see the organization, for which Ms Anam 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.

Over time, she learned to take control of her life.

“Part of my family was supportive, but another looked down upon my decision,” Ms Anam explains. “When my sister said to me that I had found a purpose, I did my first media interview.”

And she never looked back.

The turning point for Ms Anam came when she realized that she too had a story to tell and so she started writing. It was not only therapeutic—it inspired others.

She accompanied Ms Wagura and spoke to her peers.

It is that mentorship that Ms Anam says enabled her to grow to be the person she is today.

She started a support group of young people in 2008 and the members continue to be a part of her life.

Ms Anam worked in the private sector in an HIV workplace programme, where she implemented strategies for HIV prevention and expanding health services. “These were the best years, because I was able to go back to the system that had shown me what stigma could lead to and I helped fix things.”

She then joined the Kenya Empowerment Network of People Living with HIV to coordinate a national advocacy and communication portfolio. Now working in advocacy and communications for the International Community of Women Living with HIV, she considers that she lives a full life and is bringing up her 17-year-old son and 11-year-old adopted daughter. They 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.”

“I want to raise their consciousness regarding their life 20 years down the road,” Ms Anam says. She tells young people that she is one of the lucky ones, because she bounced back.

She also believes that families and communities need to better address the needs of 19–24-year-olds and encourage an open dialogue and mentorship.

Ms Anam thinks that parents believe that once their children get to 18 they are okay and do not need any guidance and support, yet many mistakes are made after that age. Ms Anam explains that young people need to love themselves and appreciate that, whatever experiences they go through, it’s a lesson for life.

Helping others gives her a purpose. In addition, she adds, “I want to stop one more person going through what I went through, and if they have gone through the same thing, then I want to help them get their life back on track.” 

The Belarus Fashion Week, held in Minsk, Belarus, concluded with the Fashion AIDS Line show on 14 May. A competition for young designers established by the organizers of Belarus Fashion Week and the UNAIDS Belarus Country Office, Fashion AIDS Line promotes support for people living with and affected by HIV and eliminating HIV-related stigma and discrimination.

More than 20 of the country’s leading designers presented their work, inspired by the international symbol of the AIDS response—the red ribbon. All the models appeared in masks to symbolize the stigma faced by people living with HIV.

The award for the most original mask was won by Tanya Tur, while the award for the best performance was won by Tatiana Efremova. Ekaterina Kabanova was presented with the award for the best ethno-style designer, Igor Pletnev won the best idea award and Ekaterina Tikota won for “unity with UNAIDS”.

Historia Naturalis, Davidova and ScapegoaT_404 won the top prizes and will represent Belarus at the final Fashion AIDS Line show, to be held in Moscow, Russian Federation, in April 2018 at the VI Eastern Europe and Central Asia AIDS Conference.

On 8 December, the thematic session of the 39th meeting of the UNAIDS Programme Coordinating Board (PCB) focused on ageing and HIV.

Out of 36.7 million people living with in 2015, 5.8 million were aged 50 years and older. With the expansion of access to treatment, more people living with HIV are surviving and ageing.

The PCB thematic session brought together representatives of civil society, governments and development agencies to explore the experiences of people living with HIV older than 50 years of age and to learn lessons from health, community and social protection systems for older people.

A successful AIDS response must continue to expand treatment access equitably, by providing people-centred, age-sensitive and integrated health services. Moreover, people living with HIV must be supported to lead long and healthy lives, and people over 50 years of age should have equal access to social protection, employment and social integration.

The thematic session also explored the HIV vulnerabilities for people over 50 and the importance of age-sensitive prevention, testing and linkage to care programmes. People over 50 have the same prevention needs as younger people.

The diversity of people over 50 years old was a theme that emerged throughout the session. There was a call for treatment, prevention, care and support services that acknowledge and respond to the specific needs of older people who use drugs and older sex workers, gay men and other men who have sex with men and transgender people.

Also explored during the session was how to learn from the experiences of people living with and/or at risk of HIV over 50 years old and how to apply those lessons learned for an effective AIDS response. The participants confirmed the need for a life-cycle approach and a well-equipped system for health that anticipates and meets the needs of people living with and at risk of HIV as they age.

Future work includes research on the physical effects of ageing with HIV, the long-term effects of antiretroviral therapy and innovations to ensure uninterrupted and quality treatment access for all.

The meaningful engagement of older people living with HIV can support national, regional and global responses to HIV to ensure that older people living with HIV live long and healthy lives.

GENEVA, 12 December 2016—At its 39th meeting, the UNAIDS Programme Coordinating Board welcomed the significant progress made in the response to HIV and stressed the need for sustained investment, strengthened commitment, partnerships and innovation to enable more countries to accelerate the delivery of services to end the AIDS epidemic by 2030.

In his opening address, the Executive Director of UNAIDS, Michel Sidibé, took stock of a momentous year for the AIDS response, during which access to antiretroviral therapy expanded to more than 18 million people and more countries adopted a Fast-Track response to ending the AIDS epidemic by 2030. A Fast-Track response includes a set of measurable targets that must be reached by 2020 in order for the world to be on course to end the AIDS epidemic by 2030.

Mr Sidibé underlined the need to continue to respond to the underlying issues that increase the vulnerability of people to HIV infection, particularly specific groups of people, including young women and adolescent girls and key populations, such as sex workers, transgender people, gay men and other men who have sex with men, prisoners and people who inject drugs. He announced plans for a new prevention coalition across different initiatives and among different leaders, implementers and community representatives committed to closing the prevention gap.  

Despite the progress made in responding to HIV, Mr Sidibé warned of emerging global challenges that threaten to blow the Fast-Track response off course.

“It is essential that countries continue to have access to long-term, predictable and sustainable resources,” said Mr Sidibé. “If this is not the case, they will not be able to sustain and accelerate their responses to HIV and there could be a rebound of the AIDS epidemic in the coming years.”

During its three-day meeting, the Board noted the shortfall of funding commitments to support UNAIDS’ work and emphasized the need for the Joint Programme to be fully funded. At the same time, the Board called for the intensification of efforts to eliminate new infections among children and keep their mothers alive, so as to reach the targets set out in the 2016 Political Declaration on Ending AIDS and the Start Free Stay Free AIDS Free framework. The Board welcomed the successful replenishment of the Global Fund to Fight AIDS, Tuberculosis and Malaria and called for increased investment in community-based health service delivery and in civil society partners involved in the AIDS response, as well as for the strengthening of other measures designed to enhance community involvement.

The Board emphasized that community leadership will become even more important under the Sustainable Development Goals, which require inclusive responses and reaching the people most at risk of being left behind. Community responses have been in the vanguard of the AIDS response from the very beginning, but are not a substitute for national responses; rather, they constitute an integral component of evidence-informed national implementation plans, in particular for a Fast-Track response.

During the dedicated thematic day, the Board focused on the state of the epidemic among people living with HIV and at risk of acquiring HIV aged 50 years and above, the impact of ageing with HIV and related health and social sector responses. There was broad consensus for the need to support programmes and health system structures to comprehensively meet the needs of a growing number of people living with HIV who are aged 50 or over.

Representatives of Member States, international organizations, civil society and nongovernmental organizations attended the meeting, which was chaired by Switzerland. Ghana served as Vice-Chair and Ecuador as rapporteur.

The UNAIDS Executive Director’s report to the Board and the Board’s decisions can be found at unaids.org. 

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.

Since 2010, the annual global number of new HIV infections among adults (15 years and older) has remained static, at an estimated 1.9 million. Members of key populations, including sex workers, people who inject drugs, transgender people, prisoners and gay men and other men who have sex with men, and their sexual partners accounted for 45% of all new HIV infections in 2015.

In some countries and regions, infection rates among key populations are extremely high—HIV prevalence among sex workers varies between 50% and 70% in several countries in southern Africa. One study from Zimbabwe found HIV prevalence rates of 27% for male inmates, 39% for female inmates and 60% for sex workers, with 9.6% of these getting newly infected between 2009-2014. New infections among gay men and other men who have sex with men have been increasing in all regions in recent years. Across countries, key populations are between 10 and 50 times in greater risk of HIV infection compared to other adults.  

Criminalization and stigmatization of same-sex relationships, sex work and drug possession and use, and discrimination, including in the health sector, are preventing key populations from accessing HIV prevention services. Effective government support and community-based and implemented HIV prevention and treatment programmes that provide tailored services for each group are currently too few and too small to result in a significant reduction in new infections.

In order to achieve the target of reducing new HIV infections among key populations by 75% by 2020, a large-scale increase of programmes and the creation of an enabling social and legal environment are needed.

We must reduce new HIV infections among key populations

The global number of new HIV infections among adults has remained static, at an estimated 1.9 million, since 2010, threatening further progress towards the end of the AIDS epidemic.

New HIV infections among gay men and other men who have sex with men are rising globally, and there has been no apparent reductions of new infections among sex workers, transgender people, people who use drugs or prisoners. Studies conducted in southern Africa have found HIV prevalence 10–20 times higher among sex workers than among adults in the general population, with rates of HIV infection reaching 50% of all sex workers tested, and HIV prevalence reaching 86% in one study in Zimbabwe. A synthesis of studies including more than 11 000 transgender people worldwide estimates HIV prevalence to be 19.1%.

Key populations remain among the most vulnerable to HIV. Analysis of the data available to UNAIDS suggests that more than 90% of new HIV infections in central Asia, Europe, North America, the Middle East and North Africa in 2014 were among people from key populations and their sexual partners, who accounted for 45% of new HIV infections worldwide in 2015.

Reinvigorating HIV prevention among key populations requires domestic and international investments to provide key populations with tools, such as condoms and lubricants, pre-exposure prophylaxis and sterile needles and syringes, and testing and treatment. However, the design and delivery of such HIV combination prevention services is often limited by a reluctance to invest in the health of key populations and to reach out to them.

In many countries, key populations are pushed to the fringes of society by stigma and the criminalization of same-sex relationships, drug use and sex work. Marginalization, including discrimination in the health sector, limits access to effective HIV services. There is an urgent need to ensure that key populations are fully included in AIDS responses and that services are made available to them.

Guidelines and tools have been developed for and with the participation of key populations in order to strengthen community empowerment and improve the delivery of combination prevention services by community-led civil society organizations, governments and development partners.

The available evidence shows that when services are made available within an environment free of stigma and discrimination and involving key population communities, new HIV infections have declined significantly. For example, street youth in St Petersburg had a 73% decrease in HIV seroprevalence from 2006 to 2012, primarily due to decreased initiation of injection drug use. This marked reduction in the HIV epidemic among street youth occurred after implementation of extensive support programs and socio-economic improvements.

The replication of such successes and the scale-up of combination prevention programmes in all cities and sites where key populations live and work, implemented by countries and community organization networks, will help prevention efforts get back on track to achieving the target of reducing new HIV infections by 75% by 2020.

Since 2010, the annual global number of new HIV infections among adults (15 years and older) has remained static, at an estimated 1.9 million. Members of key populations, including sex workers, people who inject drugs, transgender people, prisoners and gay men and other men who have sex with men, and their sexual partners accounted for 45% of all new HIV infections in 2015.

In some countries and regions, infection rates among key populations are extremely high—HIV prevalence among sex workers varies between 50% and 70% in several countries in southern Africa. One study from Zimbabwe found HIV prevalence rates of 27% for male inmates, 39% for female inmates and 60% for sex workers, with 9.6% of these getting newly infected between 2009-2014. New infections among gay men and other men who have sex with men have been increasing in all regions in recent years. Across countries, key populations are between 10 and 50 times in greater risk of HIV infection compared to other adults.  

Criminalization and stigmatization of same-sex relationships, sex work and drug possession and use, and discrimination, including in the health sector, are preventing key populations from accessing HIV prevention services. Effective government support and community-based and implemented HIV prevention and treatment programmes that provide tailored services for each group are currently too few and too small to result in a significant reduction in new infections.

In order to achieve the target of reducing new HIV infections among key populations by 75% by 2020, a large-scale increase of programmes and the creation of an enabling social and legal environment are needed.