Summer 2018 hellogorgeous.nl
THIS SPECIAL EDITION IS A CO-PRODUCTION OF
A BIG THANKS TO OUR PARTNERS
my Me & care h H eparlot v i d e r . DOING THE R I GH T T H I N G
YOUTH
VOICES
INTRODUCTION Photography by Greg Gorman
Yet many still are. Around the world, most new HIV infections happen among key populations, including gay and other men who have sex with men, transgender people, sex workers, prisoners and people who use drugs. Too many don’t have access to HIV prevention and treatment because of social, political and economic marginalisation. Too many adolescent girls and young women are at risk of HIV because they don’t have access to sexual and reproductive health services and face inequality, discrimination, and violence. If we’re going to solve the problems that these populations face – and I’m determined that we will – we first have to make sure that all people are heard and seen.
WHEN IT COMES to social tolerance and the advancement of human rights, the world has long looked to the Netherlands. This country, long a centre of trade and commerce, was an early haven for persecuted religions, a center for early campaigns to permit women to vote and to decriminalise homosexuality, a pioneer in pragmatic approaches to drug use and sex work, and the first to legalise same-sex marriage in
2001. In short, this has long been a place to break barriers and build bridges. That’s why so many of us have come to Amsterdam this summer for the 22nd International AIDS Conference, and it’s why I’m grateful that hello gorgeous is helping to spotlight our brothers, sisters, and siblings living with and affected by HIV around the world. Together, we declare that, in 2018, no one should be living in the shadows.
The photographs in Where Love Is Illegal haunt me. With his camera, Robin Hammond shines a light on some beautiful young people with stories to tell. They are people who are discriminated against, who are threatened with imprisonment or even execution just for being who they are. Their fear is understandable – and their resilience is inspiring. This issue also tells the story of the advocates and organisers courageously working every day to end the epidemic. It highlights challenges we face, from laws criminalising HIV status to the barriers preventing young gay men and sex workers from receiving health services. Yet, I remain full of hope: these pages show how leaders around the world are working to end the stigma of HIV, lifting
up marginalised communities, and helping ensure all can access the care they need and enjoy the dignity they deserve. I have always believed, more than anything, that love can heal the world. That’s why I founded the Elton John AIDS Foundation 25 years ago: to give all people the freedom and dignity to be themselves and to live healthy lives. I am proud that we support so many different programmes that provide the critical services and resources that help so many better access their own potential. Our humanity is universal, and national borders should not define the lives we are able to lead. This special edition is for people from all walks of life – from every religion, every political mindset, and from every country in the world. We are all humans with the same basic dignity, and we all want to love and be loved. I hope that when you look at these photographs and stories, you will feel what I feel: the yearning to break barriers, the urge to build bridges, and the passion to stand up, speak out, and do the hard and essential work of changing hearts, minds, and lives, one person at a time.
Sir Elton John hello gorgeous 1
EDITORIAL Photography by Marjolein Annegarn
About seven years ago, I got together with a group of friends and decided that the time was ripe to shake up perceptions of HIV in the Netherlands. At that point many people were still in the closet about their HIV status; living with the virus was thought to be extremely hard. Yet the way people saw HIV was completely at odds with our own life experiences. We decided to create a magazine to empower people with HIV and reassure them that there was no need to stay in the closet. After all, visibility is the best way to tackle stigma and ignorance. With a month to go before presenting the first issue, we had collected enough money to cover printing and distribution costs, but not enough to pay ourselves – the editors, writers and photographers. But since we knew that the magazine could make a difference, we decided to go ahead and publish anyway. The money would sort itself out later. Now, with 23 editions behind us, we all still produce hello gorgeous on a voluntary basis. The magazine is published by our foundation, also called hello gorgeous. Through this foundation we’ve developed a range of projects
to combat stigma and empower people with HIV. Specially for AIDS 2018 we have collaborated with the Dutch HIV Association and fashion designer Bas Kosters on Positively Dutch, a campaign designed to give conference delegates a warm, multilingual welcome from the Dutch HIV community. During the conference we will also be presenting the Stigma Experience. Located in front of the RAI, this spectacular installation will allow you to experience what stigma feels like. Once inside it, you’ll discover how other people’s judgements and prejudices can become internalised stigma, and how liberating it can be to accept yourself as you are. We’re incredibly proud of this special AIDS 2018 edition, which is a coproduction with the International AIDS Society and the Elton John AIDS Foundation. It’s packed with stories about courageous people from all over the world who have stood up for others who don’t have a voice – often meeting resistance along the way. Enjoy! Leo Schenk Editor-in-chief leo@hellogorgeous.nl hello gorgeous 3
CREDITS Coverphoto Farisai by Marcel Rutschmann
EDITOR IN CHIEF
CONTENTS
Leo Schenk GRAPHIC DESIGN Stefan & Adrian Silvestri www.gebr.silvestri.nl EDITING Liza van den Dijssel Bas Timmermans ART EDITOR Henri Blommers HELLO GORGEOUS TEAM Andrea Bandelli Henri Blommers Inês Brito Durk Doornbos Liza van den Dijssel Adrian Silvestri Stefan Silvestri Bas Timmermans COMMERCIAL MANAGER Karen Kraan karen@hellogorgeous.nl ADVERTISING SALES Robert Witteman robert@hellogorgeous.nl CIRCULATION
INTRODUCTION by Sir Elton John EDITORIAL
1 3
COMMUNITY RESPONSE INTRODUCTION
by George Ayala, Judy Chang, JoAnne Keatley and Ruth Morgan Pascal KENYA Lord-Art PHILIPPINES Winnie UGANDA Apiwit THAILAND
10 12 14 20 22
LAWS AND POLICIES INTRODUCTION
by Barbara Lee Robert USA Ilya RUSSIA Arely NICARAGUA Suzanne & Nyakwesi
TANZANIA
24 30 32 34 36
20,000 PRINTING
INCLUSIVITY
PRinterface, Leiderdorp WEBSITE MANAGEMENT Twelve Trains www.twelvetrains.nl This magazine has been published by hello gorgeous foundation. No part of this publication may be copied without the consent of the publisher. hello gorgeous, IAS and EJAF accept no liability for any errors in this publication. The views expressed and statements made in interviews do not necessarily reflect the opinions of hello gorgeous, IAS or EJAF.
www.hellogorgeous.nl info@hellogorgeous.nl The Dutch edition of this magazine is published four times a year, with the assistance of a financial contribution from Aidsfonds and Trutfonds.
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INTRODUCTION
by Michael Kirby Michael THE NETHERLANDS Ashura TANZANIA Laxmi INDIA Cecilia USA Cletis USA
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STIGMA IN HEALTHCARE SETTINGS INTRODUCTION
by Linda-Gail Bekker Gulzhakhan KAZAKHSTAN Martha BELIZE Lucy ZIMBABWE Neo BOTSWANA
MORE THINGS TO DO JOKE STRIPS WATCH OUT FOR
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THINGS TO DO
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Will and Gabi UNITED KINGDOM
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PHOTO STORIES
LAWS AND POLICIES
Where love is illegal
Laurel USA
26
48
INCLUSIVITY
Farisai MOZAMBIQUE
54
STIGMA IN HEALTHCARE SETTINGS
Sindi SOUTH AFRICA
66
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THINGS TO DO Photography by Luuk Kramer
Commemorate and celebrate
THINGS TO DO
December 2016 saw the unveiling of the HIV/AIDSmonument, located by the riverside behind Amsterdam Central Station. The monument, designed by French artist JeanMichel Othoniel, takes the form of an enormous abacus, capable of displaying a vast array of numbers. Its purpose is to commemorate lost loved ones, honour the buddies and celebrate the lives of people who have HIV. For information go to: hiv-aidsmonument.nl
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Photography by Erik Smits
“I will speak, I will speak!” Theatre company Les Enfants Terribles has spent four years travelling to all corners of the world to collect stories, videos and photos of people with HIV. The outcome, the project ATLAS2018, lends a voice to people who often go unheard and conveys a truly powerful and diverse message about what it means to live with HIV. The collection will be on display for two weeks at the Beurs van Berlage in Amsterdam, starting from 22 July, and online at atlas2018.org.
22 July – 2 August Beurs van Berlage Amsterdam Free entry hello gorgeous 7
THINGS TO DO Photography by Han Singels
The early years In its exhibition Aids in Amsterdam, the Amsterdam City Archives will display images shot during the frightening period when the virus stalked the Dutch capital like a predatory animal, back in the days when a diagnosis amounted to a death sentence. It was a period when the “buddy” role developed, when quilts were woven to keep the victims’ memories alive, and when large-scale commemorations took place, like AIDS Memorial Day. The photos capture fear and sorrow, but also love and the determination to survive.
6 July – 2 September City Archives Vijzelstraat 2 Amsterdam Free entry 8 hello gorgeous
Photography by Marjolein Annegarn
The Stigma Project Photographer Marjolein Annegarn has created an exhibition that explores the misconceptions surrounding HIV. Those misconceptions persist to this day in the Netherlands and elsewhere, and leave many people unwilling or unable to disclose their status. During the conference week, 20 anonymised portraits of Dutch people living with HIV will be on display at Museumplein. Alongside the portraits will be quotes about the misconceptions that the subjects have battled with, as well as the facts that disprove them.
23 – 27 July Museumplein Amsterdam hello gorgeous 9
INTRODUCTION Written by George Ayala, the Global Forum on MSM & HIV; Judy Chang, the International Network of People Who Use Drugs; JoAnne Keatley, Innovative Response Globally for Trans Women and HIV; and Ruth Morgan Thomas, the Global Network of Sex Work Projects
Community Response 10 hello gorgeous
order to respond effectively to HIV, we must ensure that communities are meaningful partners in all aspects of the programmes that are meant to help them. HIV has the biggest impact on gay men and other men who have sex with men, people who use drugs, sex workers and transgender people. Our communities, often referred to as “key populations”, face high rates of HIV infection, sickness and death. At the same time, we’re left more vulnerable by stigma, discrimination, economic inequality and violence, all of them rooted in bigoted beliefs, punitive laws and policies. All these factors make it harder for the public health authorities to respond effectively. Far too often, our communities are seen as a problem to be solved, not a key part of the solution. Far too often, at both global
Putting communities at the centre of the HIV response IN THE HIV WORLD, it’s common to talk in terms of epidemiological categories. But AIDS, of course, is basically about people, and people don’t live in these categories – they live in communities. In
and national levels, decisions about us are made without our involvement. Far too often, we’re excluded from critical decision making and funding processes, silenced, sidelined and tokenised.
As a result, policies and programmes fail to address our real needs. Yet we know that if we get our communities involved in designing and implementing public health strategies, we can ensure that those strategies have maximum impact. Members of our communities are much more likely to participate in programmes that they have helped to develop. Likewise, programmes will be more effective if they’re designed to address specific community needs and preferences. Communities have a much greater awareness of the social factors that affect HIV risk and vulnerability and of the community resources that are available to help. Through community engagement, we can make programmes more effective and promote health as a fundamental human right. Our communities should be leading research, programmes and policymaking. We should not be sidelined by repressive government policies or political agendas that prevent programmes from being effective or deny human rights. Researchers, public health officials and policymakers must secure the genuine assent of communities most affected by HIV. People and the communities in which they live are our greatest resources in fighting AIDS. By making communities true and equal partners, we can meet the challenge posed by AIDS, while promoting social justice.
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COMMUNITY RESPONSE
“Nothing for us without us” 12 hello gorgeous
Written by Leo Schenk Edited by The Language Lab Photography by Kelvin Gicheru
“I have always identified as a bisexual man, but only gained the confidence to come out and speak openly about my sexuality in 2012” says Pascal Macharia (26). He talks to us about coming out in Kenya, a country whose laws and culture make it very difficult to be out.
“We ensure that our community can enjoy free health services in a stigma-free environment”
“I’VE BEEN VERY strategic about coming out to my family, doing it gradually. I started by telling my mother and brother, who have always cared for me,” Pascal says. This made it easy for the rest of his family to accept who he is.
Inexperienced The year Pascal came out was also the year when he got his first job in the HIV field as a research assistant with the Kenya AIDS Control Programme. His job was to transcribe and translate in-depth interviews with gay men who were working as sex workers in Nairobi.
Pascal says that he felt very inexperienced at the time, listening to their personal stories. “I was struck by the bravery of some of the men. They were rising above the fear of stigma and ignorance to come out and tell their stories. And by doing so, claiming better health rights and conditions. Not just for themselves but also for younger men who still don’t have a voice.” Since then the guiding principle in Pascal’s work has been: “nothing for us without us”.
Multi-layered One third of the 1.2 million people living with HIV in Kenya are either men who have sex with men, people who inject drugs or sex workers. Although HIV medication is free of charge for everybody, the HIV prevention programmes are neither gay-friendly nor inclusive for male sex workers. Community organisations can offer services, but are restricted from enrolling under-aged young men who have sex with men. These young men live in fear of having to come out to access services. The gay community in Kenya is a target for attacks by policy makers, the media and almost the entire general population. The stigma is particularly extreme and multi-layered for male sex workers. “HIV positive male sex workers experience a triple dose of stigma”, Pascal continues. “They’re stigmatised for being gay, for being sex workers and for having HIV. This keeps people from seeking health services.”
Giving back Pascal is currently working as a learning officer at Health Options for Young Men on HIV/AIDS and STI’s (HOYMAS). In 2016 he received a grant from the International AIDS Society (IAS) for his work to improve the understanding of the barriers that keep young gay men and young male sex workers from accessing health services in Nairobi. “These men experience stigma and discrimination from healthcare workers, the police and the heterosexual community. Besides that, they have reported having trouble with disclosure, which prevents them from openly seeking services.” Living up to his guiding principle, Pascal says that all the services at HOYMAS are offered by peereducators. Their clinic is fully community-led, including vetting and hiring staff. Pascal: “We ensure that our community can enjoy free health services in a stigma-free environment.” He may be having a lot of fun working for the community in research, monitoring and evaluation, but Pascal is always on the lookout for more opportunities to serve and give back to the community. “I benefited from a scholarship throughout my high school, so I feel obligated to continue being an advocate of change for all the families who made sacrifices so that I could get a decent education.”
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COMMUNITY RESPONSE
Giving back to the community 14 hello gorgeous
Written by Liza van den Dijssel Edited by The Language Lab Photography by Mark Ryan Alvarez
With nearly 80% of new HIV infections affecting 15-35 year-olds in the Philippines, and limited access to information about prevention and sexual health for key populations, there’s plenty of work that needs to be done. Lord-Art Lormada (29) is a Programme Officer for LoveYourself in Manila.
“Through the years I also became motivated to help friends who are infected with HIV or are affected by it in some other way”
“FRESH OUT OF college, I was looking for a nursing job at the very peak of the nursing boom in the Philippines,” Lord-Art begins. “There were lots of surplus nurses. Hospitals were using that situation to exploit people, asking newly licensed nurses to work for free as ‘volunteer nurses’, with a promise of hiring them as regular employees after a year or two. Working for free in a private hospital didn’t suit me well. I believe that if you’re good at something, you should never do it for free – unless it’s for the good of the community. So I decided to use my other skill set and started working as a graphic designer.”
Counsellor Lord-Art was working as a designer for a nursing test review centre when a colleague shared a blog post with him. LoveYourself, a new non-profit community-based organisation, was looking for HIV test counsellors. Lord-Art says: “That got me interested. As a nurse, I wanted to learn more about HIV and its connection with the LGBT community. And I felt that this would be a good way to give back to my community.” “I started working as a volunteer HIV test counsellor for LoveYourself and after six years I became Programme Officer for the online campaign TestMNL. Currently I manage two programmes, offered by the Philippines Shell Foundation, which bring HIV awareness and screening closer to companies, universities and colleges.”
Extremely limited This is a sorely needed initiative, because HIV is becoming an epidemic among Filipino youths. An estimated 32 new HIV infections are reported daily, and a third of these new cases are young people. The latest data of the Epidemiology Bureau, from February 2018, shows that an overwhelming 86% of the newly diagnosed cases are men who have sex with men and that sexual contact remains the predominant mode of transmission (97%). According to Lord-Art, underprivileged youths
and men who have sex with men are particularly affected because their access to information on sexual health and HIV is extremely limited.
Bureaucracy Raising public awareness about prevention and treatment is a hard task. “In Metropolitan Manila, we partner with the Local Government Unit, and they’re doing what they can, with what they have. But the lack of resources impedes the application of new innovations in HIV prevention and treatment in the Philippines.” Wearily, Lord-Art continues: “It’s just that there’s so much bureaucracy and an inherently sex-negative attitude among Filipinos.”
Hope “When I started volunteering for LoveYourself, my main motivation was to explore new things that I wouldn’t have had the opportunity to learn otherwise. However, through the years I also became motivated to help friends who are infected with HIV or are affected by it in some other way. I want to be an advocate for them when they can’t do it themselves. It gives me hope that I might inspire others to do the same, to become volunteers and pursue whatever they care about. As Margaret Mead (an American anthropologist 1901 -1978) once said: ‘Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.’” hello gorgeous 15
COMMUNITY RESPONSE Written by Caspar Pisters Translated by The Language Lab Photography by Henri Blommers
Exactly 25 years ago, Will and Gabi travelled from the UK to Amsterdam for the International AIDS Conference 1992. Young, naive and idealistic, they came armed with only a video camera. Now they look back on their struggle and talk about the documentary that they’re making.
From a messy beginning to smart activism
“WE HAD NO IDEA what we were doing, but it felt important,” says Gabi Kent (48), explaining why she decided to bring her video camera to AIDS 1992 in Amsterdam. She brought one camera and four tapes to document a whole week of activism – she bursts out laughing while recounting it, a quarter of a century later.
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COMMUNITY RESPONSE Together with Will Nutland, now 50 but then 25, she travelled to Amsterdam from Norwich, a town in the east of England. “We were part of a small group of activists at ACT UP. We felt so young and naive, travelling to Amsterdam where we would meet all those other activists from all over the world.”
allies, to make our voices heard and demand what we needed.”
Political awakening Will and Gabi have been friends since they met at Norwich University. Gabi says: “It was our political awakening as queer.
Because they didn’t have any bigger plan in mind when they shot their footage, it was almost 25 years before Will and Gabi got round to viewing the tapes. Will says: “Gabi, who went on to have a career as a TV and documentary maker, couldn’t bear to watch the footage at first. But I loved it right away: it was worn, grainy and raw. We documented some beautiful stories.”
RageOn Now, as the International AIDS Conference returns to Amsterdam 25 years later, the pair have decided to put their footage to good use. A documentary and a website are in the works, both called RageOn.
“We felt so young and naive, travelling to Amsterdam where we would meet all those other activists” Will says: “We set up an ACT UP group in Norwich ourselves and were encouraged by activists in Paris to come to Amsterdam. They said we shouldn’t be complacent and leave the conference to the pharmaceutical industry. We had to be there, to bring the biggest possible number of people living with HIV and their 18 hello gorgeous
HIV/AIDS was the issue that sparked our outrage about homophobia and discrimination. It was a very tough time for everyone who was different; it made us realise how vulnerable we were. Seeing that, and how the politicians responded, we knew that it wasn’t the kind of society that we wanted. We wanted change.”
Some of the activists from those days have since passed away, but others remain active, and a number of them work in the field of HIV. Gabi and Will have been tracking them down for the documentary and the website, to ask them how it feels when they look back on their struggle: about how it shaped them and about the insights that they gained, which may hold useful lessons for the activists of today. During AIDS 2018 they will be holding an event to discuss the subject. Will says: “Yes, we kicked up a hell of a fuss, and it was fun. There was lots of great sex too. Many of the activists were incredibly hot and there was a real sex-positive attitude behind everything that we did. But was it effective too?” Not all of it, he acknowledges. “There was one
stunt we dreamt up over a few beers the night before, without really doing our homework: we were going to storm the British Consulate and present them with our demands. When we got to the Consulate, security threw us out immediately. I still wonder why on earth we targeted them with that protest in the first place.”
Smart activism Nowadays Will, who still remains engaged as an activist, has a new motto: “smart activism”. He is cofounder of prepster.info, a site through which he is battling to make PrEP available in the UK. One part of his strategy is for the drugs to be provided through the country’s National Health Service. Another, which he considers an example of smart activism, is not to sit back and wait for that to happen, but instead to devise alternatives – “to get PrEP into people’s bodies as quickly as possible”, as he puts it. “For example by setting up buyers’ clubs that procure PrEP for their members abroad and by ensuring that PrEP users get the medical guidance that they need.” Activism doesn’t always need to take the form of shouting and provocation, Will believes. “You’re not going to be invited to the health ministry if you can’t resist splattering the building with paint every time you turn up there. Recently a number of activists forced their way into the premises of pharmaceutical company Gilead. They all stripped off to reveal a letter on their backs
– when they stood together, it spelled out the word “Greed”. It generated some great photos. But later I got a call from Gilead asking if I knew anything about the protest. They’d been prepared to talk to the protesters about their demands, but the protesters declined the opportunity. That means passing up a chance for dialogue with the enemy. And that way, you don’t actually achieve anything.”
“How young we were. The sorrow about those who are no longer with us. You see them again, and hear their voices – activist John Campbell for instance. Just hearing his voice transports me right back to that time. And goodness, what a mess, looking back, knowing what I do now.” Gabi laughs: “Sometimes
But Will also notes the rise of a new generation of activists, who are making the most of the means available to them. “Nowadays it’s no longer about going out on the streets. Through Prepster I’ve worked with a couple of young black podcasters who have dedicated broadcasts to the subject of PrEP. These broadcasts have reached communities of thousands. That’s fantastic.”
Storytelling Gabi says: “These days, as an academic, I reflect on how we learn from our experiences, and the knowledge that we gain from this process. That’s the idea behind RageOn: passing on lessons about activism. Storytelling is a more effective way of doing this than any academic text could ever be.” It will take a few years to put together the documentary, Gabi expects, but some of the footage will be available on the website before then. She finds herself taken aback by the different feelings that arise when she views the tapes.
I feel a little embarrassed too. But I definitely feel proud of the hopes we had and the change we were seeking. There’s something quite beautiful about how we all came together.”
“Nowadays it’s no longer about going out on the streets”
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COMMUNITY RESPONSE
Still plenty to do 20 hello gorgeous
Written by Rick Meulensteen Translated by Tom Johnston Photography by Henri Blommers
doubts, convinced that she would not get better. That changed when she went to a meeting of a peer support group. It was only then that she realised that she had the power to change things.
Absent
Winnie Sseruma (57) is an advocate, a standard bearer, an expert and a Ugandan living with HIV. And for over 20 years, she has been one of the most prominent African female HIV activists in the UK. She fights to reduce stigma and increase visibility.
“I was one of the few people who spoke about HIV from an African perspective”
“I WENT BACK TO Uganda to die,” says Winnie stoically. In 1988, during a stay in the US, she had been informed that she had HIV. Her world collapsed; it was essentially a death sentence. With six months’ worth of medication – that was all she got since the doctor in the US couldn’t treat her once she’d left the country – she moved in with her sister in Uganda, awaiting her inevitable death.
That peer support group was what motivated her to become an HIV activist. “I just couldn’t keep my mouth shut,” she said, laughing. “I was one of the few people who spoke about HIV from an African perspective. That meant that I soon became involved with a number of organisations for African immigrants who were living with HIV.” For a long time, that segment had been virtually absent from the British HIV narrative. “There were no services for women or for children. Nearly all of the attention had been focused on gay men.”
The stigma around HIV within the immigrant communities is an extra obstacle that keeps people from looking for help. “Many women with HIV only receive their HIV diagnosis when they are in hospital to have a baby, and they are immediately blamed for having brought the virus into the family.” That stigma holds for heterosexual African But things turned out difmen as well, by the way. ferently. During a visit she “In Africa, such men are paid to London in 1996, breadwinners; they have doctors there insisted that a certain prestige. But in she stay in Great Britain for Great Britain they have to further treatment. Since begin at the bottom of the she had a British passport, social ladder. And then it she was eligible to stay and turns out that they also receive medication that had have HIV. Many simply not been available to her in live in denial.” That led Uganda. But she was full of Winnie, as an HIV activist
– she has chaired the African HIV Policy Network, among others – to appeal to doctors and hospitals to provide special services for immigrant communities and women.
Standard bearer For the past couple of years Winnie has also been engaged as a PrEP activist, and there too, she has become very visible within the African communities. She says: “The best thing would be to have a woman who doesn’t have HIV leading the campaign, to show that PrEP will also help protect them. In the media it is seen primarily as something that benefits gay men.” Winnie is trying to find “PrEP champions”, standard bearers within immigrant communities, but that is not easy. “People always say: we need to empower women. But how can you do that without also starting a dialogue with men about equality and the traditional power dynamics within relationships and families? We can inform women about the need for PrEP and attempt to improve their position, but if they can’t speak openly at home with their partner about their use of PrEP we won’t achieve anything,” Winnie summarises. Fortunately, a lot has happened over the past few years. People’s views have changed. But Winnie warns us against too much optimism. “Some African immigrants are still dying from the effects of Aids. They fail to look for help because the stigma is too powerful. There is still plenty to do.” hello gorgeous 21
COMMUNITY RESPONSE
“ My true calling” 22 hello gorgeous
Written by Bas Timmermans Edited by The Language Lab Photography by BiGphoto
Feedback
In Thailand, men who have sex with men, live in cities and are aged 18 to 24 are the group most affected by HIV. TestBKK is a campaign led by APCOM that encourages these young gay men, as well as transgender people, to get tested for HIV and provides them with sexual health information.
“I want to be part of the movement that ensures that my gay friends and I stay healthy and informed”
APIWIT TIBAMRUNG (28) is Campaign Officer for TestBKK. He says: “I manage the campaign’s partnership with gayfriendly or gay-exclusive HIV service providers in Bangkok. We don’t have our own clinics, but work with existing ones for HIV/STI testing, PrEP uptake, access to ART and other services. “I also manage both the more traditional channels as well as social media. We’ve got 60,000 followers on Facebook and 30,000 subscribers on YouTube. We use these channels to receive questions and input. Apart from that, we have our own website and use Google AdWords and other forms of paid advertising. We communicate via posters and even variety shows, and we have a mobile pop-up testing too clinic.”
Does the key population have a say in the services that TestBKK offers? Apiwit explains: “The content we create for our media channels is influenced by feedback from our audience. They submit written stories to us and give us feedback online or when we meet them in focus groups or during periodic meetings. Besides that, we consult health service providers and fellow community-based organisations working in the HIV field in Bangkok.” These various forms of feedback and consultation have helped identify a trend of illegal drug use among young gay men in Bangkok, which is causing an increase in HIV infection rates. As a result, TestBKK is now working on an online portal where these men can learn how to minimise the risk of infection associated with drug use.
Viral Talking about the impact of TestBKK, Apiwit says: “Our work has been successful: the videos about the importance of HIV testing on the TestBKK YouTube channel have reached a million views. Also, the webseries “GayOK Bangkok”, Thailand’s first ever HIV-message-focused script, went viral throughout Asia. Both have increased awareness of PrEP among young Thai men who have sex with men and helped reduce the stigma associated with people living with HIV. However, it’s difficult to determine if our campaigns have resulted
in more people getting tested. And that’s what potential funders mostly focus on: the number of people getting tested because of our campaigns. They’re less interested in results such as increased awareness.”
Relative freedom Apiwit says: “I got involved four years ago, just after my undergraduate degree in branding and communication. TestBKK was looking for a campaign assistant with proficiency in marketing and communication. As a young gay man, I saw the vacancy as my true calling.” The latest information from AIDS Data Hub shows that new infections and HIV-related deaths in Thailand are declining. Around 69% of people with HIV are receiving treatment. Since recently, people have become entitled to two free HIV tests a year. If a person tests positive, free or affordable HIV medication is provided under a social welfare programme. Some of the government clinics provide free PrEP for gay men as part of their research. But advocacy and promoting testing are still necessary. “I want to be part of the movement that ensures that my gay friends and I stay healthy and informed. Besides that, we need to exercise our sexual rights.” Apiwit concludes: “With anti-LGBT movements on the rise in neighbouring countries like Indonesia and Malaysia, I’m no longer taking the relative freedom we have in Thailand for granted.” hello gorgeous 23
INTRODUCTION Written by Barbara Lee Congresswoman of the 13th District of the State of California in the United States House of Representatives
Laws and Policies 24 hello gorgeous
AS A LAWMAKER, I try to focus on doing what I can to help the communities I represent. But when it comes to HIV, the law often gets in the way of our efforts to reduce new infections and prevent people from dying. Several years ago, I sat on the Global Commission on HIV and the Law. The Commission looked at barriers to effective responses to AIDS and considered how to respond in a way that respects human rights. After reviewing all the evidence and hearing from hundreds of people around the world, our conclusion was clear: harsh laws undermine rights, hinder treatment programmes and waste precious resources. We called on governments to work with civil society to ban all forms of HIV-related discrimination and violence, including against those most vulnerable to HIV.
Making laws work for key populations In 2018, there’s still a lot of work to do. More than 100 jurisdictions in 70 countries have laws that criminalise HIV non-disclosure, exposure or transmission. In fact, these laws exist in more than 30 states in my
own country. Roughly half of the world’s population live under laws that ban or place restrictions on sex work. And in more than 70 countries it’s still illegal for members of the same sex to have consensual sexual relations. Experience clearly shows that these laws and policies are counterproductive, unscientific and discriminatory. That’s why I’ve introduced legislation to get rid of laws in the United States that criminalise or discriminate against people living with HIV. These outdated laws often target and disproportionately punish sex workers, people who use drugs, transgender people, men who have sex with men, migrants and people of colour. It’s time to bring an end to them and to base our policies on public health, not prejudice. Laws reflect a society’s values, but on its own, the law can only do so much to end stigma, discrimination and social exclusion. In our own lives and communities, we must actively advocate for policies and programmes that unite rather than divide us. Once and for all, we must make the whole world understand that respecting human rights goes hand in hand with fighting AIDS.
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LAWS AND POLICIES Written by Gerrit Jan Wielinga Edited by The Language Lab Photography by Eelk Colmjon
let alone for one who had HIV. In those years I feared being locked up in a psychiatric facility and that my son could be taken away from me, just because I love women. The state laws were not in my favour.”
Stigma Index
One of the most intriguing women working in the HIV field today is Laurel Sprague (48), who has been positive herself since 1991. We caught up with her in Amsterdam last May, after she stepped down as executive director of GNP+, the Global Network of People living with HIV.
“I’M FROM CADILLAC, a small town in Michigan, USA. My family is Baptist, an evangelical Protestant religion in which local communities of believers wholeheartedly stand up for what they think is right. I think my activism and fight against injustice are directly connected with my upbringing. Nowadays my spiritual practices are more eclectic and reflective of my own beliefs
Justice warrior and lifestyle, and of the communities that I’m part of today. I came out as a lesbian around the same time that I became a mother and learned that I had HIV. The situation for a lesbian living in Michigan at that time was not ideal, 26 hello gorgeous
“Before I was diagnosed with HIV, I was already studying Political Science; I’ve made a career as an academic. I specialised in political philosophy, political theory and feminist theory. I also researched advocacy strategies for human rightsbased legal reform and the interaction between gender inequality and HIV criminalisation. All through my academic career I remained active in the HIV field, and I put my two cents in whenever I could. That’s how I got involved with the Stigma Index in 2008. That index is a global research and action project run by and for people living with HIV, which operates in more than 90 countries. It’s an important project because governments and organisations need trustworthy data on what’s happening to people living with HIV. Only then can they make informed choices when it comes to drafting laws or formulating policies. Given my experience of academic research, I was very happy to bring my knowledge to the table.”
Horribly unjust “Another field I feel very committed to is HIV criminalisation. It’s horribly unjust that people living with HIV get hunted down just for having HIV.
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LAWS AND POLICIES
“I think my activism and fight against injustice are directly connected with my upbringing”
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In most cases the conviction is based only on an allegation that a person living with HIV didn’t disclose their status before having consensual sex. As anyone living with HIV knows, it’s not that easy to disclose HIV to anyone. Fear of rejection, violence, shame and self-stigma play a part when you’re living with the virus and you meet someone who you want to get close to, but perhaps don’t know that well yet. Often the charges come from an ex-lover who takes revenge after the relationship ends. It’s a huge mystery to me how these people think that justice has been served when a former lover gets jailed – for up to 25 years in certain parts of the world. It lacks all human decency. But the terrible truth is that, at the moment, you can get arrested on the basis of a simple allegation that you didn’t disclose your HIV status during consensual sex in more than a third of the countries in the world.”
Notorious “The USA is notorious for putting people living with HIV behind bars, but countries like Australia, Canada, New Zealand, and Russia can also take punitive action when it comes to sex and HIV. The very fact that the law singles out HIV as a reason for conviction is beyond me, but it’s a reality. And Europe is no exception. In the past three years people living with HIV have been convicted in at least 20 European countries. We’ve seen a rise in convictions in the Czech
Republic and in Belarus, where they will arrest you if you go to hospital and the authorities suspect you could have infected someone else. We’ve also seen an increase in convictions in some African countries, like Zimbabwe for instance.”
U=U “You would assume that with medical advances showing that effective HIV treatment stops onward transmission, as articulated by the Undetectable = Untransmissable statement, the lawyers of accused people living with HIV would have an extra tool to defend their clients from prosecution. That’s very much possible in individual cases. However, the people most vulnerable to prosecution will always be the people least likely to have an undetectable viral load: the poor, those without adequate health care, migrants, LGBT people, sex workers, people who use drugs, or young people, all of whom are exposed to discrimination in health settings. What if an accused person doesn’t have the money to pay for medication, experiences stock-outs, has no access to viral load testing, or is on an inadequate treatment regimen? Should they be prosecuted for having sex with another consenting adult? Whether or not their viral load is undetectable, no one living with HIV should be prosecuted for consensual sexual activities between adults. In my view the whole business of hunting down people living with HIV because of their HIV is wrong. If
someone is suspected of intentionally exposing another person to HIV, then justice systems don’t need special laws. In these exceedingly rare cases, the regular assault laws can be used. In fact, HIV-specific laws, prosecutions and the media hysteria that surrounds them all enhance the stigma. And this causes people to avoid being tested and prevents them from getting life-saving treatment.”
Not over “I am aware that I’m a very lucky woman to be living with HIV where I am, with a son born free of HIV, and that I can afford my medication and health care. My work has allowed me to travel and meet lots of people living with HIV. When I’m on my travels, what worries me is the poverty of people living with HIV, especially women, young people, and children. These already vulnerable groups face hardships that are at times unimaginable. Sometimes they have to take medication that requires food in places where they don’t even have food. Or children and young people are given complicated, outdated types of medication. And patriarchal laws, norms, and policies exclude women living with HIV from full enjoyment of their political, civil, social and economic rights. There’s still a lot of work to be done, and I hope that I can deploy my skills and knowledge where they will be most useful. I would encourage other people to do the same. HIV is not over.”
“No one living with HIV should be prosecuted for consensual sexual activities between adults”
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LAWS AND POLICIES
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Written by Lizan van den Dijssel Edited by The Language Lab Photography by Jennifer Doherty
am required to register as a sex offender for 15 years. Upon my release, instead of retreating, I embraced HIV advocacy and social justice work with a passion and clear-eyed conviction: our level of awareness determines our destiny.”
Crime of violence
Although the US Centers for Disease Control and Prevention have confirmed that Undetectable = Untransmittable, and despite attempts at federal level to review criminalisation laws, many states in the US still impose criminal liability on people living with HIV. Robert Suttle (39) works for the Sero Project, which advocates for reform of HIV criminalisation laws.
“Considering all the things I’ve had to overcome so far, it’s become empowering for me to be open”
“IN HINDSIGHT, I realise that I’ve been practising self-advocacy ever since my HIV diagnosis 15 years ago. But it wasn’t until my life was nearly destroyed by a grossly unjust HIV conviction in 2009 that I got involved in the HIV field. At 30 years old, I was convicted under Louisiana’s so-called ‘Intentional Exposure to AIDS Virus’ statute, even though no-one ever suggested I intended to harm anyone and I wasn’t accused of transmitting the virus. I served six months in a Louisiana state prison and
and training academy on HIV criminalisation. In addition, with the aid of its national network of HIV activists, advocates and allies, Sero issues a health and wellness resource guide for people living with HIV and/or hepatitis who have been incarcerated.
Complex In the United States there is increasing agreement that the risk of HIV transmission by someone with an undetectable viral load is effectively zero. But many states still have HIV-specific criminal laws and, despite these laws lacking any scientific basis, they are still used to unjustly prosecute people living with HIV.
Robert’s own experiences have made him a determined advocate for ending criminalisation and supporting the health and well-being of all people. “My unique life experiences, my race, my HIV status and my incarceration are complex and sometimes difficult to separate. The collateral consequences of a conviction have lasting “For decades, HIV has diseffects. I’ve had to share proportionally affected more details than most many black Americans: about my personal life social factors create the when meeting or getting highest risk of acquiring to know someone for the HIV and the highest risk of first time. Relocating can be incarceration”, Robert says. overwhelming if you have “The laws were imposed a criminal record and sex years ago to slow down offender status. Travelling sexual HIV transmission, outside of the US and rebut are increasingly used turning can be a pain. today to incarcerate alI can’t be denied entry ready marginalised and to the country, but I get disenfranchised communi- delayed or detained by ties. The focus of these laws US Customs every time. is more on HIV disclosure, Mostly, I worry about my than on whether the person employment rights and my living with HIV had maliearning potential, so that cious or actual intent to do I can support and take care harm. That way, they treat of myself through retireany risk of HIV exposure ment.” or infection as a crime of violence.” “Considering all the things I’ve had to overcome so far, Sero’s primary work init’s become empowering for cludes raising public aware- me to be open. As Andrew ness as well as outreach to Spieldenner said: ‘If we say mobilise and advocate for we experience barriers – HIV criminal law reform. believe us. Don’t dismiss us The project also produces or pretend we are not tellthe biennial HIV is Not a ing the truth because you Crime national conference don’t experience it’.” hello gorgeous 31
LAWS AND POLICIES
“Silence is not an option” 32 hello gorgeous
Written by Leo Schenk Edited by The Language Lab Photography by Ivan Reedm
took drugs together. It’s unclear to me how the authorities decide on punishment. I’ve been thinking about this a lot. I believe it’s much better to offer people substance therapy than put them in jail. Drug dependency is a health condition, not a crime.”
“Support. Don’t Punish” is a global advocacy campaign to support the well-being of people who use drugs, involving organisations such as the Andrey Rylkov Foundation in Russia. The campaign is intended to help people like Ilya (36) from Moscow. “I believe that we must recognise that people need medicine and treatment and that banning drugs won’t work,” he says.
To the point THE ANDREY RYLKOV Foundation promotes humane drug policies in Russia that are based on tolerance and the protection of health, dignity and human rights. Ilya is one of their clients. He was not at all surprised when he found out he has HIV. “I suspected a long time ago that I might be HIV positive. Many friends of mine are positive and I knew the risks of getting infected too.” From the start Ilya was determined not to let his own HIV diagnosis silence him. “Who would I keep this a secret from? Hiding your status only makes things worse. Silence is not an option.”
Every year the Andrey Rylkov Foundation takes part in “Support. Don’t Punish”. Launched in 2013, this global advocacy campaign seeks to empower, mobilise and raise the voices of allies, activists and community-based organisations to advance policies that support the well-being of people who use drugs. The campaign has been successful in mobilising people, opening spaces for dialogue with policy makers and influencing the public narrative around drugs and people who use them. A large number of organisations in over 200 cities in 96 countries around the world take part.
Not a crime
“Who would I keep this a secret from? Hiding your status only makes things worse”
Despite growing recognition of the negative consequences of the international “war on drugs”, recent developments, such as the worsening HIV crisis in Russia, show that drug policies are absolutely not focused on the well-being of affected communities. Instead, these policies demonise, dehumanise, oppress and criminalise people who use drugs. Ilya experiences Russia’s repressive drug policies on a daily basis: “Two of my close friends were imprisoned, simply because they
Ilya thinks that this campaign is very important in order to support people who use drugs in Russia. “The name of the campaign is right to the point. I believe that we must recognise that people need medicine and treatment and that banning drugs won’t work. Drug use has always existed and will always exist. And it’s necessary to support people. Instead, our government is trying to punish us harder and harder.”
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LAWS AND POLICIES Written by Marleen Swenne Edited by The Language Lab
Arely Cano (40) has been living with HIV for 20 years. Since 2000 she has been fighting openly for the rights of people living with HIV in her country, Nicaragua. Hers is a courageous fight, as people living with HIV in Nicaragua often face stigma and discrimination.
Putting the needs of women first 34 hello gorgeous
“IN 2000 I CAME out about my HIV status. I decided to do so to support the human rights of people living with HIV. At the time, only one person in Nicaragua had publicly disclosed their status: the president of the organisation I was working for. Because he is gay, the media talked about HIV as a tabloid issue, saying that it was a gay disease. Since women are also affected by HIV, I thought it was necessary for a woman to show her face.
“In all Latin American countries, fighting for the rights of people with HIV and other human rights can be risky” “At the time it wasn’t a difficult decision. I did it on impulse, triggered by seeing the only person who had publicly disclosed their positive status, my friend, being attacked and discriminated against. Together we decided to sue the government: back then there was no access to treatment. We fought to ensure that this urgent need was met and eventually we succeeded.” In Nicaragua, people with HIV are largely invisible. According to official records, there are around 11,500 people living with HIV in the country, out of a population of around 6 million. But most people
think that the real numbers are much higher. Only 4000 people receive antiretroviral therapy. About 25% of Nicaraguans with HIV are female, some of them sex workers.
Dangerous Arely was president of the Nicaraguan HIV advocacy organisation between 2005 and 2014. Currently she is the Latin-America regional secretary of the International Community of Women living with HIV/AIDS (ICW), an organisation that is active in 19 countries. “There’s a lot of work to do, so many things still need to change. ICW’s top priority is peer support. Also, we have to combat discrimination and human rights violations, like forced or uninformed sterilisation of women by medical doctors. Women are afraid to say anything about it when it happens.” In Nicaragua there are only three other leaders of community organisations who are just as open as Arely. She stresses that her work can be quite dangerous: “In all Latin American countries, fighting for the rights of people with HIV and for other human rights can be risky. The main reason is that governments themselves are the violators and we, as activists, need to denounce this.”
Law In 2012 a law was proposed that would have criminalised sexual transmission of HIV. “The law never got passed, thanks to the
actions of the AIDS organisations that supported us. Because of our efforts, there have not been any cases of criminalisation or people being charged with HIV transmission.” Three years ago, law no. 820 was passed. It formulates the issues in a way that protects people with HIV, as well as providing for access to treatment, prohibiting discrimination and generally requiring consent for testing. “It’s a good law, but it still allows doctors to force pregnant women to get tested, and makes no provision for what happens when a woman refuses. For women, living with HIV in Nicaragua is challenging and complicated, because HIV care and advocacy mainly focus on men, trans people and sex workers. There’s only one situation in which a woman with HIV will get proper care and support: when she is pregnant. Because in that case, the main goal is to prevent HIV transmission from mother to baby. The women are merely seen as mothers who are capable of transmitting HIV to their babies: the main concern is not for the woman herself. Of course preventing HIV transmission to babies is important, but this clearly shows a real disregard for women living with HIV. Neither the general public nor policymakers have a clue what these women need.”
No money “The new law works in theory, but it isn’t enforced. There’s no money available for implementation or awareness-raising.
Our national government hasn’t made any provision for this. As a result the HIV community knows about this law, but the majority of the population doesn’t. That’s why we are facing so many problems.” For Arely and her colleagues, it is difficult to work with a government that doesn’t
fund national HIV organisations. “60% of funding is raised by the global community. In the past five years 38 national organisations working in Nicaragua have stopped their activities because of a lack of funds. Now only 24 are left. If we want to make progress in Nicaragua, international cooperation and support is needed more than ever before.” hello gorgeous 35
LAWS AND POLICIES
Raising awareness through theatre 36 hello gorgeous
Written by Leo Schenk Translated by The Language Lab Photography by Jimmy Mathias
Suzanne ter Haar (28) set up and runs the Dutch foundation GUTz, which stands for “Get Up Tanzania”. The foundation is affiliated with GUTz Organisation, a Tanzanian NGO, whose managing director is Nyakwesi Mujaya (32).
“The government has made the work of GUTz more difficult in many respects”
SUZANNE TER HAAR followed up her drama studies in the Netherlands by studying African theatre in South Africa. There she witnessed the devastating impact of HIV on the population. In 2012 she travelled to Tanzania to work as a volunteer for Art in Tanzania. “At that time Nyakwesi lived just round the corner from me, and was working with street children in Dar es Salaam who’d lost one or both parents to AIDS,” she says. “Not long after we met, we drew up the first plans for GUTz.”
Participation GUTz runs HIV prevention and awareness projects, mainly in remote areas of rural Tanzania, combining education with entertainment (“edutainment”). In addition, GUTz organises music and theatre festivals, at which the – mainly young – visitors can get
tested on-the-spot for HIV. Nyakwesi says: “We present forum theatre and encourage audience participation. This helps to reduce stigma, giving people the opportunity to really talk about HIV for once, free of the usual fear and shame.”
servants now work with fixed budgets. If we invite a government official to come and see what we’re doing, we need to pay them for the journey and compensate them for their time, because it’s regarded as overtime.”
Tanzania has a population of 55 million, spread across more than 30 regions. The average prevalence of HIV is 4.7%, but rates vary strongly from region to region. In 2016 GUTz tested 7000 people over the course of a week in one of the country’s most remote regions, and one in ten results were positive – a finding that shocked even the government. Suzanne explains that one reason for these prevalence rates is shortcomings in preventive measures. “In the region concerned, the government only allowed pharmacies to sell condoms. But they’re closed in the evenings. So when people go out at night and want to buy protection, they have nowhere to turn.” If you’re HIV positive, treatment is free, but clinics in remote areas don’t always receive a regular supply of drugs. “Then people have to travel to the city for their medication, and many don’t have the money to make the trip.”
Tanzania also has laws targeting gay men, which prohibit special services from being provided to men who have sex with men. Nyakwesi says: “There’s a risk that the government could decide to treat our work as the promotion of homosexuality and shut down our organisation.” Besides the taboo associated with homosexuality, there’s also widespread stigma about HIV. So people are often afraid to get tested or, if they are positive, to take medication. Suzanne says: “I recently spoke to a grandfather who’d lost both his son and his daughter to AIDS. He brought his grandchildren to us to get them tested, because he didn’t want to lose them too. It took a lot of courage for him to tell us that.”
Overtime The government has made the work of GUTz more difficult in many respects. Nyakwesi says: “A couple of years ago, a new president took office and he wants to tackle corruption. As a result the government has become very formal in its dealings and civil
Although there’s obviously plenty of room for improvement in the government’s efforts to tackle HIV, Suzanne and Nyakwesi believe that Tanzania’s people have the solution in their own hands. Nyakwesi says: “We need to share information with each other on how to protect ourselves, and spread the word that there’s life after an HIV diagnosis. Because of the unjustified fear and stigma, the virus often still has a major impact on people’s lives. There’s just no need for that.” hello gorgeous 37
INTRODUCTION Written by the Hon. Michael Kirby AC CMG
Inclusivity 38 hello gorgeous
evolves, it’s having an ever greater impact on socially excluded groups: gay men and other men who have sex with men, people who use drugs, sex workers and transgender people. Today, we’ve made global health history by expanding access to antiretroviral therapy. Yet well into the fourth decade of our efforts to fight HIV, those efforts are being undermined by counterproductive and discriminatory laws. And at the heart of those laws lies social exclusion. Social inclusion – ensuring that every individual is equally valued – is fundamental to achieving universal human rights. These basic rights must be respected and upheld, not only as a key part of the global response to HIV, but also to respect the individual dignity of all people everywhere.
Valuing every human life THE HIV EPIDEMIC has highlighted the human consequences of social inequity. From its very beginning, the epidemic hit vulnerable and marginalised population groups the hardest. And as it
We need to ensure that every person has equal access to jobs and educational opportunities, regardless of gender, sexual orientation or economic status. We must stop entire groups from being
regarded as outcasts. And we must make sure that groups who have long been excluded from society obtain non-judgmental, high-quality healthcare. The GIPA Principle (Greater – and more meaningful – Involvement of People Living with HIV) has shown that empowerment and inclusion are more effective than scapegoating and social exclusion. By managing to make HIV care and treatment a reality where resources are scarce, we’ve shown how other health problems and social challenges can be brought out of the shadows. Yet our efforts to combat stigma and discrimination remain incomplete. To end social exclusion, we need to transform attitudes, practices, economic systems and laws. Schools, places of worship, families, workplaces all need to change how they see and respond to people they think of as “different”. To achieve sustainable health and well-being for all, we must work to bring people from all walks of life into an inclusive and welcoming society. This is the lesson that I’ve learned from AIDS. To make sure that we can pass this legacy on to future generations, we need to focus on concrete results in the here and now.
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INCLUSIVITY Written by Joep Heldoorn Translated by Allen Gibson Photography by Linelle Deunk
Michael Tatarnikov (40) fled his home country, Uzbekistan, because he was persecuted for being gay. While living in the Netherlands, he was diagnosed with HIV, which sent him into a deep depression. Ultimately it was his artistic talent and his iron will that helped him break out of his isolation.
Art as therapy “I GREW UP in a boarding school,” Michael says. “At the age of 15, I realised that I was attracted to other boys.” Homosexuality is outlawed in Uzbekistan. When staff at the school discovered that 40 hello gorgeous
Michael was gay, they started building up a dossier on him. “Those papers became like my second shadow,” he explains. “They followed me wherever I went, making my life impossible.”
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INCLUSIVITY In order to be granted refugee status in the Netherlands, Michael had At the age of 20 Michael was to prove that he couldn’t sentenced to seven months’ return to Uzbekistan. “So confinement in a secure in- my mother sent over some stitution. “They hoped that of the documents from it would turn me straight. my dossier. They proved There were four or five peo- beyond doubt that I’d been ple to a room. Anyone who persecuted for being gay. became aggressive would I was granted a residence immediately be sedated, permit and allocated a so all the inmates were home in Maastricht.” constantly stiff with fear.
Confinement
A fresh start Keen to make a fresh start, Michael began building a new life for himself. But in 2011 he became sick; it turned out that he had HIV. “When I heard the diagnosis, I didn’t believe it. Only after the third positive test did it really sink in.” All the negative feelings he harboured about himself and about HIV drove him into a deep depression. “Because I was so sick, I lost a lot of weight. People could tell that something was wrong. I felt dirty and increasingly hid myself away from the world.”
What I remember most is the deep sense of loneliness that I felt.” The judge told Michael that he’d got off lightly. “I was warned that next time I’d get a long prison sentence. That’s why I decided to flee Uzbekistan, and ended up travelling to the Netherlands on a tourist visa in 2009.” 42 hello gorgeous
“For me, creating art is the best form of therapy for tackling depression” It took a long time before Michael was able to break out of his isolation. He has cut off all his ties with his home country, except for occasional contact with his mother and sister.
Thanks to his perseverance he has managed to get his life back on the rails. “I followed a protein-rich diet to put some weight back on and began getting a lot of exercise. Now I look good and I’m not afraid to show people.” To reveal his innermost feelings, Michael started to draw and paint. “Art is my way of encapsulating my past and present.” HIV may not play any role in his richly coloured art, but homosexuality certainly does.
Keep searching Taking up drawing and painting proved to be a masterstroke, not least because it helped to strengthen Michael’s ties to the Netherlands. “For example, I’m now in the process of organising my first exhibition. That has brought me into contact with more people. I know other people with HIV now, too. It’s taken a long time, but better late than never.” “For me, creating art is the best form of therapy for tackling depression. It has helped me to reorganise my life. I’d really love to study art, but unfortunately I can’t afford to.” Does Michael have a message for people from other countries who are living with HIV? “The most important thing when you’re faced with adversity is not to give up. Whatever happens, keep searching for options. Nothing is more important than believing in yourself. If you keep searching, sooner or later you’ll find a way.”
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INCLUSIVITY
New beginning 44 hello gorgeous
Written by Leo Schenk Edited by The Language Lab Photography by Zacharia Mlacha
When she first found out that she was HIV positive, Ashura Athumani (34) had a hard time accepting it. Now she’s a role model who inspires others to get tested and treated. “Seeing people change their sexual behaviour and getting people with HIV to start treatment is the best motivation for me.”
ASHURA LIVES IN Iringa town, which is located in the region of the same name in central Tanzania. She moved there from Dar es Salaam after the loss of her husband, who died unexpectedly of a stroke only a week after being diagnosed with HIV. One month after his death, Ashura told her sister that her husband had been diagnosed with HIV before he passed away. Her sister encouraged her to go to the hospital to get tested, which is when Ashura
found out about her HIV status. But she didn’t accept the diagnosis easily. “At the time I wasn’t ready to face the fact that I have HIV. I thought the hospital had given me the wrong result because I’d been faithful to my husband.” Feeling angry and frustrated and struggling to accept the reality of her new situation, she left Dar es Salaam without her two children and moved to Iringa.
Second time A chance encounter with Bahati, a peer educator from the Sauti Project, changed Ashura’s life for the better. “Bahati was leading a discussion in a local bar on the importance of HIV testing and getting treatment. I asked her if I could talk to her privately, said that I was intrigued by what she had to say and pretended that I’d never had an HIV test.” Ashura was taken to a mobile testing site run by the Sauti Project and there she heard for the second time that she was HIV positive.
“Fortunately, everyone supported me and encouraged me to start taking medication” “Bahati helped me to process the diagnosis and begin treatment. I thought
other people would point their fingers at me for having HIV. Fortunately, everyone supported me and encouraged me to start taking medication. This was not the end of my life, but instead a new beginning,” Ashura says.
Satisfying An estimated 1.4 million Tanzanians live with HIV and some 55,000 people are newly infected every year (UNAIDS 2016). Sex workers are particularly at risk. Fear of stigma, discrimination and criminalisation often prevent them from accessing health services. Generally, in Tanzania, as in many other African countries, HIV prevention, care and treatment programmes do not sufficiently meet the needs of key populations. To address these gaps, the international health organisation Jhpiego aims to increase access to health services for sex workers in those regions of Tanzania most affected by HIV. Ashura herself now works as a peer educator for sex workers and helps other women to access Jhpiego’s health services. “I mostly engage with young girls who do sex work and are having unprotected sex. I’m happy that I’m able to bring many girls into contact with the HIV services. Seeing people change their sexual behaviour and getting people with HIV to start treatment is the best motivation for me. I’m definitely having a positive impact upon my community and that feels truly satisfying.” hello gorgeous 45
INCLUSIVITY
The right to exist 46 hello gorgeous
Written by Colet van der Ven Adapted by Liza van den Dijssel Translated by Allen Gibson Photography by Adriaan Backer
Since then, hijras have long experienced various forms of discrimination and oppression. Their rights have been restricted and their access to education, healthcare and employment limited. But in 2014 their legal position improved significantly when India’s Supreme Court recognised them as a third gender. This official recognition marked a great victory for the activists who had been engaged in the struggle since the end of the 20th century. One of those activists was Laxmi.
Sitting cross-legged on her double bed, Laxmi Tripathi (38) applies her make up with slow, deliberate strokes. Layer by layer, line by line, her female alter ego emerges.
LAXMI IS A hijra. You could say that a hijra is a biological man who has rejected their masculine identity and goes through life as a woman or as someone “in between man and woman”. Hijras include people who may be considered transvestites, transgender or intersexual, but none of these terms fully covers the concept. “Hijras are a third gender, with their own unique culture and history,” Laxmi says. “It’s that collective identity that makes us unique.”
Pariahs The right to lead a dignified life as a hijra used to be taken for granted. Hijras traditionally occupied an important place in society,
even holding influential positions. This changed dramatically under British rule, however. In 1871 the British introduced the Criminal Tribes Act, which branded various groups – including hijras – as “born criminals”. And so under the laws of the colonial rulers, hijras became pariahs.
“The Supreme Court ruling has changed a lot for the good, but now we need to change attitudes”
Dialogue Laxmi started her career as a social worker. But she wanted more: to bring an end to the stigma and oppression faced by hijras. In 2006, she and her boyfriend Atharv set up the Astitva Trust. Astitva translates roughly as “the right to exist”, and the organisation’s goals include advocating for the rights of sexual minorities. Laxmi believes that hijras are partly responsible for the social stigma that they face because they isolate themselves from society, confining themselves to their own homes and their own community. “There’s no exchange, no dialogue,” she says. “But dialogue could actually help eliminate much of the prejudice. That’s something that we could change ourselves.” Some hijras make a living from begging and from blessing babies and newlywed couples. But most are reliant on sex work for an income. And the conditions in which they do that work
are appalling: ramshackle brothels, with painfully thin partitions and curtains that don’t cover the windows – if they’re lucky. So it’s no surprise that hijras are the population group in India most at risk of contracting HIV. In 2011, some 40% of hijras in Mumbai were HIV positive. Thanks to improved access to healthcare, that percentage has now dropped significantly. But Laxmi and Atharv are still concerned about the position of hijras: income from sex work amounts to less than a dollar per customer, which forces hijra sex workers to see more customers. In turn, this increases their risk of encountering a customer who will insist on condomless sex and won’t hesitate to resort to violence if they refuse.
Change Since Astitva was founded, progress has been made in a number of areas: legal recognition of hijras as a third gender, improved access to healthcare and a reduction in HIV infection rates. In addition, the first hijra mayor and the first hijras in the business world are now a fact. Laxmi says: “The Supreme Court ruling has changed a lot for the good, but now we need to change attitudes. That’s what we’re currently fighting for. Through the ages, hijras traditionally occupied important roles in society and we want to reclaim them. History is on our side. A dignified existence for hijras is on the horizon. Just you wait and see.”
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PHOTO STORIES Photography by Robin Hammond
Robin Hammond is a photojournalist focused on amplifying the voices of marginalized people around the world. He is the founder of Witness Change, and was commissioned by the Elton John AIDS Foundation to illuminate the stories, challenges, and resilience of people living with HIV.
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Lucky & John UGANDA, refugees in KENYA hello gorgeous 49 hello gorgeous
PHOTO STORIES
Gilberto MOZAMBIQUE hello gorgeous 50 hello gorgeous
Tasha UGANDA, refugee in KENYA hello gorgeous hello gorgeous 51
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Jennifer MOZAMBIQUE
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Kuteesa & Ernest UGANDA, refugees in KENYA
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Ronnie UGANDA, refugee in KENYA
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Kiria MOZAMBIQUE
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Avelino MOZAMBIQUE Avelino & Neston MOZAMBIQUE
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Seth & Andrews GHANA
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Moses UGANDA, refugee in KENYA hello gorgeous hello gorgeous 53
PHOTO STORIES
Katie Mazira Teixeira Matos & Becky Mathambe MOZAMBIQUE 54 hello gorgeous
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INCLUSIVITY
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“Living my dream”
Written by Liza van den Dijssel Edited by The Language Lab
is to eradicate stigma by elevating the visibility of transgender leaders, and to create a platform for transgender people living with HIV to tell their own stories.”
Cecilia Chung is a 52-year-old transgender woman who serves as the Senior Director of Strategic Projects at the Transgender Law Center in San Francisco. She is also the founder of Positively Trans, a network of transgender people living with HIV. “I can truly say that I’ve been living my dream”, she says.
CECILIA WAS BORN and raised in Hong Kong and emigrated to the United States in 1984, when she was in her late teens. After coming out to her family in the 1990s, Cecilia ended up being homeless for a period. Within a year she had discovered that she was HIV positive. Later, when she began working as an HIV test counsellor, Cecilia discovered a broader passion for advocacy. “I was taught from a young age that people like me would go to hell. Ever since I came out as a transgender woman, I’ve been in search of my community. That’s been the motivation behind my work,” Cecilia says.
Educating providers “I’ve been using my own story to educate providers and policy makers to promote change. A few years ago, with the support of the Elton John AIDS Foundation, I founded the Positively Trans project. It’s led by, and works for, transgender people living with HIV. We’re building a network of HIV-positive transgender leaders. We collect our own data through communityparticipatory research and we support the community leaderships and social entrepreneurship of transgender people living with HIV. Our aim
result, there are significant healthcare inequities in the states that haven’t adopted the Affordable Care Act and Medicaid expansion.”
Despite the shift to a more conservative government, Despite all the medical the United States is still advances, the HIV epidemic considered a good place in the United States is far to live in terms of treatfrom being under control. ment. Criminalisation laws According to the Centers for are still in place in many Disease Control and Preven- states. But others – such tion, 14% of those living as Iowa, Colorado and with HIV are unaware of California – have moderntheir status. That being ised their statutes, so that said, HIV-related mortality failing to disclose your HIV rates have been declining status to sexual partners since 1995, with the major is no longer a felony and breakthrough of antiwon’t result in a prison retroviral therapy. The risk sentence. burden has also shifted over time: having once topped the list, HIV is now Accepted the ninth biggest cause into society of death in the age group 25 to 44. Cecilia continues: “I believe that it’s time for more of us to be sitting Opioid crisis at the policy table and to contribute to the decisionThe groups most affected making processes that by HIV are gay and bihave an impact on our sexual men, other men lives. Since my comingwho have sex with men, out, I’ve done outreach, intravenous drugs users, been an HIV pre-test transgender women, and counsellor, co-founded women of colour. In rethe Trans March in San cent years, there have also Francisco, and organised been outbreaks in rural the 40th anniversary comareas, driven primarily memorations of the Gene by the opioid crisis among Compton’s Cafeteria Riot. the white working class. I can truly say that I’ve “Interestingly, the United been living my dream. States has been crimiThe connections I’ve nalising people of colour made, in addition to recsince the beginning of onciling with my family, its ‘war on drugs’, but the have probably helped current administration save my life. My ultimate has declared a national hope is to see transgenopioid crisis among people der people accepted into who use drugs for pain society. No one should management. Our federal have to choose between government has shifted its family and authenticity position on the epidemic – especially our young and is moving away from people, who need nothing the National HIV Strategy but love and support from of the Obama era. As a their families.” hello gorgeous 51
INCLUSIVITY
Entrenched in Bible verses 52 hello gorgeous
Written by Colet van der Ven Adapted by Bas Timmermans Translated by Tom Johnston Photography by Adriaan Backer
bians are lagging behind in their emancipation. Homosexuality still carries stigma from the past: white slave owners would sometimes rape black male slaves in front of their wives and children. As “mixed” relationships are still taboo, black and white gay men often have only superficial or even anonymous sexual contacts with each other.
Discrimination has a long history in the Mississippi Delta, once an important hub of the slave trade and later a Ku Klux Klan stronghold. The legal framework for discrimination was segregation, established in 1896 under the deceptive slogan “separate but equal”.
“Homophobia also exists in many black churches, yet many AfricanAmerican gays still feel a connection with their faith”
Homophobia also exists in many black churches, yet many African-American gays still feel a connection with their faith. “Religion was the main source of strength and trust during slavery; gay men still feel the same way about the church today.” Cletis lived in California for nearly 20 years. There he could go to church with his partner without any problems; in Baton Rouge, that would THE PARENTS OF Cletis cause a stir. “But if you reTucker (54) experienced it moved all gay people from all first hand: they were the church, you’d hardly obliged to step aside on the have any musicians or pavement for white people, choir members left. Here to use the back entrance to in the South, people have the cinema, to sit in sepaentrenched themselves rate sections in restaurants in Bible verses. Leviticus and to use separate public 18:22 says that men must toilets. After peaceful renot sleep with men, for exsistance led by people like ample. But in other texts Martin Luther King Jr and you read that God is love Rosa Parks, segregation was and compassion, and that officially abolished in 1964 He cares about everyone. with the enactment of the So I take out of the service Civil Rights Act. But when whatever works for me Cletis and his family moved and leave the rest for what into a white area from the it is. I didn’t make myself; wrong side of the tracks, I only express the feelings their new neighbours welthat I have. I was recently comed them by burning appointed deacon and I crosses in their garden. wouldn’t be afraid to say that I’m gay. But no one dares to ask me.”
Taboo Segregation lives on in people’s minds, which is why black gays and les-
Cletis isn’t exactly keen to talk about his HIV status, however. “I don’t feel like discussing it; there’s so
much ignorance.” He only told his parents a year after his diagnosis. “My mother thought I would die and cried out, sobbing: ‘Oh no, not my son, not my son.’ My father said that he had predicted this and that homosexual relationships end in destruction. I told him that people with HIV can lead ordinary and healthy lives. And I intend to do just that.”
Barriers As an African-American in the Deep South you need to overcome twice as many barriers as when you are white. And as a black gay man with HIV it’s that much harder. Perhaps that is why many black gay men choose not to find out their status, even though they are disproportionately more likely to have HIV. They only get tested when symptoms start appearing. Research carried out in 2014 showed that one in five African-American men diagnosed as having HIV were already suffering from AIDS. According to the Centers for Disease Control and Prevention, if the current trend continues, 50% of black gay men in the US will become infected with HIV at some point in their lives. To illustrate the impact of this: the comparable figure for white gay men is only 9%. Despite this, the country’s current president intends to make drastic cuts in HIV-prevention and treatment programmes. Shortly after Trump took office, the official US government website on AIDS was taken offline. This does not bode well for the near future. hello gorgeous 53
INCLUSIVITY
“Still a long way to go” 54 hello gorgeous
Written by Charlot Spoorenberg Edited by The Language Lab Photography by Marcel Rutschmann
“Nowadays I feel more and more at ease with the way I am”
Transwoman Farisai Gamariel (43) was born in Mozambique and grew up in Zimbabwe. Eighteen years ago, she decided to move back to the country of her birth. We talked to her about the important outreach work that she does for Médecins Sans Frontières (MSF).
“I MOVED BACK to Mozambique in 2000 because Zimbabwe was in crisis. There was no work and no money. And I identified as gay back then, so things were hard for me. There’s a big taboo around being gay in Zimbabwe. People have to be very secretive about it, otherwise they’ll
encounter gossip, exclusion and violence. One day, a taxi driver tried to run me over on the street. A couple of ladies who saw it happen said that it was my own fault. But why? I hadn’t done anything.” In Mozambique it’s slightly easier to be gay, Farisai says. Having sex with someone of the same gender used to be a crime, but in 2015 this offence was removed from the penal code. “The problem is, however, that not many people know about this. So most people are still afraid to come out. And if you do come out, not everybody will approve of your homosexuality. So you can become isolated, even more so if you live outside the big city.”
More at ease “I was born a boy, but always felt I was a woman. Nowadays I feel more and more at ease with the way I am. Yes, people talk about me when I’m out. When I’m with friends or colleagues, they want to defend me. But I don’t care, I’m used to it. I don’t wear dresses, but I do like to put on make-up, wear a nice necklace and high heels. People should take me for who I am. “It was difficult to tell my mother. I asked my sisterin-law to tell her, but my mother didn’t believe her. When she came over from Zimbabwe to visit me and found out I had a boyfriend, she was very angry. She left again immediately, and we didn’t speak for three years. After some time we starting talking again and now things between us are alright.”
Getting better The latest research shows that 13% of people in Mozambique have HIV. Prevalence is particularly high among men in their late 30s and 40s. Thanks to awareness-raising programmes and treatment as prevention, infection rates among the younger generation have fallen. “In Mozambique it’s hard to talk about HIV. Many people have been traumatised by seeing friends and family members die a horrible death from AIDS. At MSF we do outreach work with mobile clinics. We try to start a conversation and provide information about HIV. We explain that, thanks to modern medicine, you don’t have to die of AIDS. And we encourage people to get tested, of course. When someone turns out to be HIV positive, we will arrange for them to get treatment and keep mentoring them.” Farisai and her colleagues have recruited sex workers to take part in a PrEP trial. Around 44 men are now taking this preventive HIV pill and being monitored. “In the future we’d like to provide it to more people, but the government hasn’t given approval for it to be dispensed in health centres. With this trial we want to show the government that PrEP is an important way of preventing HIV. Things are slowly getting better for gay people and people living with HIV in Mozambique. But we still have a long way to go.”
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INTRODUCTION Written by Linda-Gail Bekker, IAS President
Stigma in Healthcare Settings 56 hello gorgeous
cases of HIV-related stigma and discrimination occur. This is especially true for key populations, including men who have sex with men, sex workers, people who use drugs and transgender people. Discrimination in healthcare settings can be a matter of life and death. People living with HIV who fear discrimination from healthcare workers are 2.4 times more likely to delay getting treatment until they become ill. In Nigeria, one in five people living with HIV say that they’ve been denied healthcare due to their HIV status. These problems are especially bad for key populations, who already live on the margins of society and often experience violence and criminalisation. A recent survey in two South African cities found that healthcare workers did not have the knowl-
Building healthcare settings that are welcoming to all WHEN YOU RECEIVE a positive HIV test result, you’re highly vulnerable. What you need is care and support from a compassionate healthcare worker. Yet healthcare settings are often where the worst
edge, skills and training to understand and manage HIV among key populations. As a clinician, I’m very aware of the need for healthcare workers to be
well trained, open, compassionate and non-judgmental. If I were to show no interest in my patients’ lives or let myself be guided by prejudice, I might never ask patients about their sexual history, screen them for gender-based violence, make referrals to mental health services or provide other support to help them stick to their treatment plan. If we drive people away from healthcare services, we may never get them back. We need to move beyond the prejudices that prevent people living with HIV and key populations from receiving basic human health rights. We must encourage and train healthcare providers to deliver non-judgmental health services, despite discriminatory laws, traditions and beliefs. Doing the right thing means providing healthcare that contributes to health and dignity for everyone. There are some incredible healthcare providers out there on the front line: doctors, nurses, receptionists, pharmacists and others, who deliver high-quality HIV prevention, treatment and care services to key populations. These individuals set the standard for a strong and sustainable healthcare system. Those of us who are healthcare professionals must encourage our colleagues to go above and beyond, support one another, keep open minds and remain willing to step outside of our comfort zones.
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STIGMA IN HEALTHCARE SETTINGS
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Written by Liza van den Dijssel Edited by The Language Lab Photography by Lyubov Chubukova
would never concern us. In the beginning of the 2000s, HIV surfaced among drug users and spread quickly. Via places of detention, where illegal drug trafficking took place, the virus spread throughout the country.”
Clashes
As a child Gulzhakhan Akhmetova (50) from Kazakhstan dreamt of becoming a doctor. Thanks to the support of her husband she was able to make this dream a reality. “Every time my patients succeed, it inspires me to continue working.” “GROWING UP IN Kazakhstan, my generation experienced a number of moral, ethical and political crises. After the collapse of the Soviet Union, being a doctor suddenly became a low-paid profession. Since then more than 80% of my classmates have left frontline health care.”
“Without grassroots initiatives and community support, all this work will be ineffective”
Overseas problem “I started my career in the 1990s in a rural hospital. In cities where the economy was dominated by a single industry, young people began to turn to alcohol and drugs for relief. As a doctor I tried to help them as much as possible and I learned to make quick decisions and not to be afraid of ‘difficult’ patients. After that, I worked in a large clinic in Almaty, where I first heard about HIV. We were convinced that this ‘overseas’ problem
“In 2008, I was invited by the AIDS Prevention and Control Centre in Almaty to organise medical care for people living with HIV. 80% of my patients were former drug users. Unfortunately, in Kazakhstan there’s still a lot of stigma and discrimination against people who use drugs, men who have sex with men, and sex workers. Some people consider it inappropriate to spend public money on these groups, believing that they’re to blame for their own problems. Even among medical workers, there was a lot of prejudice, resulting in medical assistance being denied or poor medical care being given. The atmosphere at the AIDS centre was tense, and there was fear and distrust between the medical workers and the patients. Clashes between patients and doctors or nurses were not uncommon.”
More inviting “I managed to convince my colleagues that the best way to work with our patients was to guarantee confidentiality and establish friendly relationships. We actively trained health workers at outpatient clinics and hospitals about HIV infection and tried to change their attitudes.
So, through joint efforts by medical and social workers, peer educators and employees of non-governmental organisations, we managed to make the centre more inviting for patients. “The problems we’re facing now are mainly caused by the lack of funding for harm reduction programmes. But the situation is very different in different regions of the country. Personally, I’m counting on the community: I think it’s necessary to cultivate active community representatives to work within HIV organisations. Without grassroots initiatives and community support, all this work will be ineffective.”
Lucky “Since I’ve been working at the centre, the number of clients in Almaty who take HIV medication has grown from 25 in 2008 to 2,000 in 2017. There have also been sad stories of loss, which still make me cry. But now I’m more confident, because I can supply effective treatment and have gained a lot of experience. “For me, the most important thing is to engage in advocacy work for key population groups, providing direct help to people in difficult circumstances. This work gives meaning to my life. I’ve gained a lot of friends, who are very proud of their perseverance, and who want to live full lives. Every time my patients succeed, it inspires me to continue working. I love my job very much. And I’m very lucky to be working in the HIV care system.” hello gorgeous 59
STIGMA IN HEALTHCARE SETTINGS
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Written by Leo Schenk Edited by The Language Lab Photography by Abhi Indrarajan
But then a friend asked her to join him and some other friends in setting up an organisation to support people living with HIV. She says: “These people saw a lot of their friends becoming sick and dying from AIDS. They wanted to do something, and I joined them in pioneering the first-ever HIV organisation in Belize: Alliance Against AIDS (AAA).” The following five years were depressing: all they could do was offer a listening ear, a shoulder to cry on and prayers. Antiretroviral medication was not available, proper care was non-existent and stigma and discrimination were rampant.
Dougie
Martha Carrillo (47) is a passionate HIV activist from Belize. She is one of the founders of the country’s first HIV organisation and has been working in the HIV field for 22 years. “The ‘human’ in ‘human rights’ is my greatest motivation.”
Martha will never forget her friend Dougie, who she met at the AAA. On slow nights at the AAA, Dougie would share his adventures with her and tell her how exciting it was to be young and gay in Belize. One day Dougie failed to turn up at the office. A few days later, on December 1 st, he died of AIDS-related complications. “After he died, I could still hear his voice and boisterous laugh as he shared his stories. Later I realised it was a call for help that I had completely missed. From that day on, I reached out even more to our LGBT community and really listened to what they had to say.”
IN 1996, MARTHA had just returned from the US to Belize with her professional degree in Psychology and was excited to be working as a high school counsellor. Urgent At the time she was totally oblivious to HIV and the After her experience at havoc it was starting to AAA, Martha recognised create in her country. the urgent need to address
human rights violations against the LGBT community. “I didn’t want to wait for other people to take the lead. I needed to push myself into decision-making positions, educate and empower myself. I wanted to make sure that both men who have sex with men and transgender people were no longer made susceptible to HIV infection by social, legal and psychological barriers.” Having served as executive director of the National AIDS Commission of Belize for four years, in 2004 she established her own social consultancy company, through which she offers research, training and strategic planning to LGBT and HIV organisations.
AIDS-free world With an adult prevalence of 1.8 % (UNAIDS 2017), Belize ranks highest in the Latin American region and third in the Caribbean. Martha’s country is dealing with a concentrated epidemic among men who have sex with men and among transgender females. Even though free services are available, there are still challenges in service uptake and medication adherence, particularly because of stigma and discrimination against people living with HIV and key populations. Martha will continue to work until “one day we can live in an AIDS-free world in which the marginalised and rejected have access to all basic human rights. The ‘human’ in ‘human rights’ is my greatest motivation.” hello gorgeous 61
STIGMA IN HEALTHCARE SETTINGS Written by Leo Schenk Translated by The Language Lab Photography by Lesanne Photography
WHEN I ASK LUCY how things are going, she laughs. “My life’s really good,” she says. She’s got two jobs and two children who she dotes on. Last year Lucy began taking HIV medication. “Every evening when the clock strikes nine, I take my pill. I look perfectly healthy – you’d never know that I’m positive.”
Lucy (37) is HIV positive and works as a peer educator for North Star Alliance in Victoria Falls, Zimbabwe. She encourages other women to make healthy choices and to enjoy their lives.
any role models to learn from at home. From a young age Lucy had to work to survive: by day she was a cleaner, and by night, a sex worker. At the age of 18, Lucy gave birth to her first child. “I knew who the father was, but he didn’t want to help me raise our daughter together, so he left us.” Lucy continued to do sex work to provide for her child. Three years later she became pregnant once more and gave birth to a second daughter. The father of this child didn’t want to know either, and left Lucy on her own to fend for both daughters. “I was at my wits’ end because now I had to put food on the table for the three of us. It got to the point that I decided I’d have to take my youngest daughter to live with her father. He’s crazy about her and takes good care of her. I still visit them regularly.”
But who’d take care of my daughter if I did that, and protect her from the kind of life that I’d had?” And then Lucy was offered a job at North Star. Her first task was to interview sex workers about their experiences of violence. At the start she was a volunteer, but now she gets paid for her work as a peer educator, carried out as part of the “Hands Off!” project. One of Lucy’s responsibilities is to manage the crisis reporting teams. “If a sex worker is having trouble with a customer – for instance someone who’s violent or refuses to use a condom – they can report it to us, so that we can inform other sex workers. This is a sisterhood and we look after each other.” Lucy still does sex work, but is no longer dependent on it to survive. “If I stopped doing sex work completely, it would be
“My optimism saved me” At her wits’ end Life hasn’t always treated Lucy kindly. Her childhood was an unhappy one. When she was six years old, her parents got divorced. Her stepmother had no time for her and Lucy didn’t have 62 hello gorgeous
In 2012 Lucy reached a turning point in her life. “I’d regularly been getting headaches and diarrhoea and decided that it was time to get tested for HIV. When I heard that I was positive, I cried all day, nonstop. I spent a week thinking about killing myself.
very hard for me to make contact with the other women,” she says. They’d say: ‘What do you think you’re playing at?’ Because I do the work myself, I’m in a much better position to persuade them to make use of the free healthcare services that are available.”
Role model Lucy’s family doesn’t know that she has HIV, but her colleagues at North Star do. “Once when I went to a different clinic, the staff there actually disinfected the cup I’d just drunk from – right there in front of me. Luckily that kind of thing doesn’t happen here.” Everyone at North Star is trained to avoid stigma-
tising or discriminating against people with HIV. Looking back on her tumultuous life, Lucy can see that her positive attitude saved her. “Without my optimism, things would have ended up badly for me. Nowadays I encourage other women to make healthy choices and to enjoy their lives. I hope that for them, I can be the kind of role model that I never had.”
“The staff disinfected the cup I’d just drunk from – right there in front of me”
North Star Alliance provides quality healthcare to mobile workers from their network of Blue Box clinics. Located at “hot spots” along major transport corridors, stretching across thirteen countries in Africa, the converted shipping containers provide healthcare to hundreds of thousands of clients each year.
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STIGMA IN HEALTHCARE SETTINGS
Transforming attitudes 64 hello gorgeous
Written by Leo Schenk Translated by The Language Lab Photography by Lesego Vincent Ntuluki
Neo Nametso Monnapula (32) is passionate about helping people in need. Having seen the devastation wrought by HIV on many families and communities, she wanted to be part of the solution. “Improving the quality of life for women and young girls is what keeps me going.”
“It warms my heart when my clients come back to thank me for the help I’ve given them”
NEO COMES FROM Shashe Bridge, a small village in Botswana. She was raised by her grandmother, who was a cook at the village primary school. “My grandmother passed away in 2004 when I was 19 years old,” she says. “My mother couldn’t cope with her loss and died a few months later. As the first born, I assumed the role of parent and raised my three siblings, who were 6, 8 and 13 years old when our mother died. I managed because of the good morals that my grandmother instilled in me. She had wanted me to educate myself and always supported me.”
High prevalence of HIV Botswana has an estimated population of 2.2 million. The prevalence of HIV in the country is high: 21.9%, according to UNAIDS data from 2017. There are an estimated 360,000 people living with HIV and the government currently offers free HIV treatment. Women in Botswana are disproportionately affected: prevalence among women is 26.3%, as opposed to 17.6% of the male population. The virus is especially widespread among female sex workers: an estimated 62% are HIV positive. There are a number of factors that leave female sex workers more exposed to HIV. Criminalisation of sex work, for example, which leads to judgmental attitudes from the police in their dealings with sex workers. What’s more, sex workers regularly fall victim to violence, but have to accept it rather than report it, because of the risk of being further victimised by the police.
find that they are refused healthcare when providers realise that they are sex workers and repeatedly contracting STIs. This approach is counterproductive, however, and discourages other subpopulations from using healthcare services or from fully disclosing risk factors when they do. Neo: “The training I provide to healthcare workers aims to make nurses aware of specific issues among these key populations and about standards of care for them. I see it as my task to clarify the facts and transform the attitudes of these healthcare providers. Some of them have told me that negative attitudes are caused by a lack of knowledge about the key populations.” The training provided by Neo’s organisation is effective: Nkaikela refers clients to clinics, and attitudes among healthcare providers are changing. As an acknowledgment of this success, Neo was honoured at the ninth International AIDS Society (IAS) conference in Paris in 2017 for the stigma-free services she provides to sex workers.
Heart-warming Neo works as a service provider for Nkaikela Youth Group. This organisation offers support to key populations like sex workers and clients of sex workers, over the phone and through home visits. Besides providing HIV testing and counselling, STI screening and treatment and psychosocial support, another important part of Neo’s work is training healthcare providers to provide stigma-free care. Sex workers sometimes
For Neo, this recognition is no reason to take things any easier, however. She is passionate about identifying community needs and resolving issues affecting them. “I’m working directly with these communities and this has helped me to appreciate their challenges. Improving the quality of life for women and young girls is what keeps me going. It warms my heart when my clients come back to thank me for the help I’ve given them.” hello gorgeous 65
STIGMA IN HEALTHCARE SETTINGS Written by Leo Schenk Edited by The Language Lab Photography by Sydelle Willow Smith
South Africa’s HIV epidemic is the biggest in the world, with more than 7.1 million people living with the virus. That’s more than 7% of the population. The group most affected are young adults, one of whom is Sindi (26). As an activist, she uses her voice to help others who are afraid to speak up.
“I’m not afraid to use my voice” “WHEN I GOT MY HIV diagnosis at the age of 21, my reaction surprised the nurses and myself too. I acted as if I already knew I had HIV and I wasn’t shocked or sad. I think I reacted that way because 66 hello gorgeous
I knew that I could still have a healthy life and that the child I was carrying was going to be born HIV negative. Some of my family members live with the virus and they have happy lives.
“My child and I deserved better�
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STIGMA IN HEALTHCARE SETTINGS “My family and friends have been very supportive. They’re proud of me for being brave enough to tell them I got tested and to be open about my HIV status. My partner at the time was very sad and cried a lot. He said he was sorry for not telling me he was HIV positive and for infecting me and putting our child at risk. I forgave him. We stayed together but broke up later because he was abusive. I couldn’t stay in that toxic relationship any longer. My child and I deserved better.”
Stronger “I’m in a healthy relationship now with another man and I’m pregnant again. He didn’t reject me when I told him about my HIV status. He said: ‘I love you and accept you. I will be a father for your daughter and give her the love she deserves from a father.’ He doesn’t care what people might say when they find out that he’s in a relationship with an HIV positive woman.
“I’m open about my status, because I’m not afraid of being who I am” “I’m open about my status, because I’m not afraid of being who I am. By being open I want to help other HIV positive young people, who think that they’re 68 hello gorgeous
alone and are afraid to disclose their status. When I posted on social media that I was living with HIV, some people left nasty comments, like suggesting I’d been paid to say I have the virus. I won’t let those people put me down. Instead, they make me even stronger.”
Complaints “I think that our government is doing its best to end the epidemic. We get treatment for free and most clinics give PrEP to young people to protect them against HIV. But some clinics don’t provide PrEP and there are numerous complaints. We need more youth-friendly clinics. Some facilities are not hygienic or clean, and at other clinics, the healthcare providers disclose the status of HIV positive people to third parties. Sometimes there are even separate clinics for people living with HIV. Some of us feel stigmatised by this. We want to use the same clinics as people who don’t have HIV. “I became an HIV activist in 2013. My counsellor told me about World AIDS Day, so I attended an event and met a few activists. I knew then that I wanted to use my voice on behalf of those who weren’t brave enough to speak up. Currently I’m working as a researcher for the Desmond Tutu HIV Foundation on a new project called SALUS. We’re developing an app that informs people about HIV and the treatment available. It can be used as a support tool and as an alarm to remind you to take your pills.”
Dream “People living with HIV experience rejection and discrimination. Some end up committing suicide and others get depressed because they don’t have any support. Some keep their status to themselves because they feel alone and live in fear in their communities. They end up not going to hospital or neglect to take their medication, because they fear judgment from the community, family workers or the nurses in the clinics. We make sure that they know their health rights and assure them that they’re not alone. “My dream is to keep working with young people who have the same HIV status as I do, to travel the world to meet other young people affected by the virus and to learn from their stories. I want to be an ambassador for any foundation that focuses on helping HIV positive people. And I’m not afraid to use my voice!”
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BE WHO YOU ARE LOVE WHO YOU WANT
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WWW.PRIDE.AMSTERDAM
AM ST ER DA M PR ID E.
28 JULY — 5 AUG 2018 HEROES
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MORE THINGS TO DO
POZ PARADISE
JOIN THE AIDS MARCH! What would the International AIDS Conference be without a march? On Monday 23 July, the official opening day, activists and supporters will join forces in a march. You can join the demonstration, calling for an end to stigma and to unequal access to HIV treatment throughout the world. The march begins at Amstelveld at 1.00 pm and ends at RAI at 4.00 pm.
What do you do when you end up with longer to live than you thought? What becomes of all those dreams you’d written off long ago, or the old stories nobody wants to hear any more? In Daniël Cohen’s bittersweet comedy Poz Paradise, three friends buy a house in Spain in the early 1990s, as a place to spend their final years. But when effective treatments for HIV come along, their lives take an unexpected turn. These long-term survivors start to realise that there may be a future for them after all. Poz Paradise will be performed at Stadsschouwburg, with English subtitles, during the the week of AIDS 2018.
POSITIVE FLAME The Olympic flame was lit for the first time in the modern era at the 1928 Games in Amsterdam. This tradition is also being adopted by AIDS 2018: a series of well known and less well known people from the HIV field will carry the torch on a tour of noteworthy parts of the city. The torch bearers will include Peter Staley, the legendary activist, and Françoise Barré-Sinoussi, the scientist who discovered the human immunodeficiency virus (HIV). The torch procession will begin at 4.30 pm on 25 July, at the HIV/ AIDSmonument.
THE POWER OF LOVE The Power of Love, a national event for people with HIV and their family and friends, has become something of a tradition for the HIV community in the Netherlands. The event is an entertaining mix of medical information, stories, performances and videos. This year’s Power of Love will be held in the evening of 25 July, with Princess Mabel of Orange-Nassau as special guest. The programme will also be accessible for English speaking guests.
MORE THINGS TO DO 23 JULY
23 – 25 JULY
25 JULY
25 JULY
For details go to: aids2018march.nl
Tickets are available at: poz-paradise.nl
For information go to: positiveflame.amsterdam
Tickets are available at: poweroflove.amsterdam
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TRY ME Inspired by the motto “walk a mile in my shoes”, hello gorgeous has developed the Stigma Experience. Thanks to this unique concept, visitors to AIDS 2018 will be able to experience what stigma feels like for themselves. Everybody talks about stigma and how it prevents people with HIV from living full lives, but only those with HIV know exactly how it feels. The Stigma Experience, located in the square in front of the RAI building, will allow visitors to experience social stigma and discover how that stigma can become internalised. The aim is to start a dialogue about the debilitating effect of HIV-related stigma and how we can take effective action to combat it.
DANCE YOUR PANTS OFF No Pants No Problem (NPNP) is a curatorial arts project started in Montreal in 2004 by Jessica Whitbread. It will host a “Sex Work is Work” Edition in Amsterdam on 26 July. Unlike other “underwear” parties, the party confronts the participants with the complexities of HIV and other personal disclosures, the criminalisation of bodies, and our own sexual privilege (or lack thereof). By doing this, NPNP criticises public health messaging and gives space for communities to discuss risk, vulnerability and choice, in ways that are realistic to everyone.
23 – 26 JULY
26 JULY
Located in the square in front of the RAI building
Jan van Galenstraat 6 Marktkantine.nl
PRIDE It would be well worth extending your Amsterdam visit until after the conference, because from 28 July until 5 August the city will host its annual Pride event. A week of festivities will kick off with the Pride Walk on 28 July, starting at 11.00 am at the Homomonument at Westermarkt. This year’s theme will be “heroes” and you’ll undoubtedly see it reflected in Canal Pride, a joyous boat parade that will sail along the Prinsengracht canal on Saturday 4 August. You really shouldn’t miss it!
INVISIBLE LIVES With the exception of Africa, HIV infection rates are highest among drug users, sex workers, the transgender community, gay men, street children and prisoners. Stigma and discrimination is widespread, and these key populations can be difficult to reach. Journalist Colet van der Ven and photographer Adriaan Backer travelled around the world to give members of these groups a voice and a face. The outcome was their book Invisible Lives: HIV on the Fringes of Society (available in Dutch as: Onzichtbare levens: Hiv aan de rand van de samenleving).
28 JULY 5 AUGUST For more details of the Pride programme go to: pride.amsterdam
See also: stigma2018.com and Colet’s articles on pages 46 and 52 in this magazine
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YOU KNOW YOUR HIV VIRAL LOAD
BUT DO YOU KNOW WHAT AFFECTS YOUR MENTAL HEALTH?
GRAEME, 32, LIVING WITH HIV FOR 4 YEARS
Visit the website or Gilead stand #221 to find out more
www.HIVisJustapartofme.eu
Organised and funded by Gilead Sciences Netherlands BV Job code: HIV/NL/18-06/1620 Date of preparation: June 2018
JOKE STRIPS: THE EMPRESS’S NEW CLOTHES Written by Joke van Soest Photography by Henri Blommers All those other organisations do a good job... good job... But the Joke van Soest Foundation is absolutely amazing! There’s no better foundation than the Joke van Soest Foundation, it’s true!
During AIDS 2018 we need to break down barriers and build bridges between organisations!
Our logo should be everywhere! THE JOKE VAN SOEST FOUNDATION FIRST!
But she isn’t wearing any clothes!!!
Hey guys what the...?!
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Unique series of reports from all over the world Unique series of with intimate reports from all andover impresthe world sive photowith intimate graphs and impres-
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sive photographs
A powerful plea to break through the taboo surrounding HIV and AIDS in stigmatised high-risk groups A powerful plea to break through the taboo surrounding HIV and AIDS in stigmatised high-risk groups Order On violence, discrithis magnificent mination, stigmatisation book at Order and trauma. Stunning www.stigma2018.com On violence, discrithis magnificent photos and harrowing mination, stigmatisation book at also available in Dutch stories of peopleStunning who and trauma. www.stigma2018.com have beenand pushed to the photos harrowing also available in Dutch edge of society – and stories of people who have beenover pushed to the sometimes it – by edge of society – and their fellow men. Colet overAdriaan it – by vansometimes der Ven and theirgive fellow men. Colet Backer them a name, vanand der aVen and Adriaan a face voice. Backer give themJana Pronk name, Dutch Minister – former a face and a voice. – former Dutch Minister Jan Pronk
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210 x 260 mm | 256 pages | integral binding | full colour | € 34.99 210 x 260 mm |of 256 pages | integral binding | full colour | € 34.99 Unique series reports from all
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Frank Operator Specialties at MSD in Haarlem
At MSD, we have been one of the leaders in the battle against HIV/AIDS for more than 30 years. Frank is an operator on the team that packs HIV-medications. “I hear the stories of people who
A LEADING ROLE IN THE BATTLE AGAINST HIV FOR OVER THIRTY YEARS
still feel stigmatized. They have to deal with their condition every day. That touches me... The battle against HIV/AIDS must go on and MSD will continue to contribute by research, improving medication and by trying to find solutions that make life easier for people who have to live with HIV/AIDS. I’m so proud to be part of that.” Go to the internet to read Frank’s entire story (www.msd.nl/frank) and for more information about ‘Our work in HIV’ (msd.com). Would you like to become Frank’s colleague? Take a look at our “Working at MSD” website for career opportunities at MSD: www.msd.nl/career
INFC-1251974-0000
We are MSD. We take care of health. Together with you. PO Box 581 | 2003 PC Haarlem | Tel. +31 23 515 31 53 | www.msd.nl | MSD | medicalinfo.nl@merck.com | 0800 - 9999 000
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Questions, problems and complaints about sexual health?
Koestraat 5a 1012 BW Amsterdam
Sexology Center Amsterdam +31 20 622 7471
General practitioner/sexologist NVVS
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Sundays: Getto Bubble Bash! All Bubble cocktails 5.00 Warmoesstraat 51 Amsterdam Tel: 020 4215151 www.getto.nl
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Everyone brings value Be your authentic self
www.philips.com
Life is better when #youareyou
Go together for Pride Heroes @ Amsterdam Pride 2018
Pride 2018
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Meet these employees and Driver-Partners at uber.com/Pride
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Growing a better world together
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WATCH OUT FOR
# 24
To be published in
September 2018
HIV in Suriname
★
INTERVIEW Christine OUT OF THE CLOSET Gerben Grimmius
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NL/HIV/0005/18c, June 2018
HIV in the Netherlands? Just look at the diversity! Stronger together!
Watch the short film about HIV in the Netherlands: www.rethinkhiv.nl/HIVinNL
ISSN 2214-1650
9 772214 165004
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