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HIV and STIs

The majority of HIV infections are sexually transmitted or are associated with pregnancy, childbirth and breastfeeding.  Our work links prevention with treatment, care and support, reduces HIV-related stigma and discrimination, and responds to unique regional and national characteristics of the epidemic.

Articles by HIV and STIs

IPPF EN's Caroline Hickson and Rutgers at AIDS2018 pre-conference on SRHR
25 July 2018

We need a conspiracy of hope, fueled by outrage, which won’t take no for an answer!

IPPF EN's Caroline Hickson on what she took away from this week's AIDS2018 pre-conference on sexual and reproductive health and rights. Our bodies aren’t divided into sectors. So how can we cross the self-created gulf between those who work to defeat HIV and AIDS, and those who fight for sexual and reproductive health and rights for all? At this week’s International AIDS Conference, IPPF, Rutgers and partners joined forces to debate the issue, inspire fresh thinking and drive collaborative action at the first ever pre-conference dealing with this issue. At the end of the day, the answer didn’t seem too complicated.  It was said over and over again, by different speakers: it is as simple as putting the human experience back at the centre of all we do. Compelling stories came through loud and clear:  Jacob Thomas from Australia described the hurt experienced as a young student, a virgin, when a doctor refused treatment for an ordinary chest infection. Instead, having asked about Jacob’s sexuality, the doctor insisted on an HIV test being administered. “After I told him I was gay, he never once looked straight at me”.  The result for Jacob?  Confusion, shame, and a lifelong mistrust of doctors. Lada Nuzhna, an 18-year-old activist from Ukraine, conveyed the loneliness of teenagers who live with HIV in her country.  While their peers are experiencing the excitement of first love, they tell her they are too frightened to even kiss someone in case they give them HIV. Simran, a transgender sex worker from India, passionately defended the fact that “I, and only I, decide who I am’’. A photo from the first AIDS Conference in 1992 was doing the rounds on social media, a massive floor to ceiling quilt of names of those who had lost their lives to AIDS.  It reminds us that love and loss, those things at the core of our humanity, are what have driven the intensity of the AIDS response. That is why, as Rutgers’ Ton Coenen put it, “HIV organisations don’t take no for an answer”. Robin Gorna of She Decides spoke of becoming an AIDS activist because of the outrage that she felt on seeing her friends dying: “We must continue to be outraged, to be driven by evidence-based outrage”. This evidence lies in numbers, but more importantly it also lies in people’s stories. The stories which have the power to awake our indignation and our anger, our empathy and our generosity of heart.  We must bring those stories to the fore and let them help people understand what it really means not to have any power over your own life, to have your sexual and reproductive freedom stifled, to be forced through pregnancy, to be willfully kept illiterate about intimacy and endangered through lack of knowledge about sexuality. Because it is these abuses and cruelties that contribute to HIV and other sexually transmitted infections, to unintended pregnancies, to violence against women, to the marginalisation of people who are transgender, to maternal deaths…  The recent Guttmacher–Lancet Commission report finds that there is no health without rights. And those rights begin long before the diagnosis of HIV, long before the need for abortion, long before an attack on a transgender individual. If we want to cure the symptoms caused by the denial of human rights, civil society organisations and activists must work together from the get-go.  We need a new and ‘visionary generosity’, said Javier Hourcade Bellocq of GNP+, based on what needs to be done for people and not for our organisations. HIV organisations need to take the plunge to talk about abortion.  SRHR organisations need to prioritise key populations, the groups most vulnerable to HIV. And together, said Alvaro Bermejo of IPPF, we must work to see what it takes to mobilise the resistance. Robin Gorna perhaps coined it best – let’s launch a conspiracy of hope! This may well be the phrase that lingers in people’s minds as they spend the rest of the week in Amsterdam. A conspiracy of hope, fueled by evidence-based outrage, which won’t take no for an answer! Until HIV is no more, and every person can live a fulfilled and free emotional and intimate life. Photo: Caroline Hickson and Ton Coenen join a panel discussion at the SRHR pre-conference. Credit: Rutgers.  

HIV
20 July 2018

IPPF EN cares: Supporting neglected communities in Eastern Europe and Central Asia

In many countries in Eastern Europe and Central Asia, young people from marginalised groups most vulnerable to HIV are being harmed by high levels of violence, discrimination and stigma, and it is enormously difficult for them to access the care they need. This is the only region in the world where the HIV epidemic continues to rise rapidly, and yet many governments are failing to take action. IPPF EN champions free, safe and dignified lives for all people, especially those who are neglected by their governments and the societies they live in. Find out more about about how we are empowering and improving care for marginalised young people in Eastern Europe and Central Asia.  

Silvana Naumova, HOPS programme manager, outside drug support clinic
20 July 2018

Battling to ensure stigma-free care for young drug users and sex workers

This article was written in September 2017. Since then, thanks to the work of NGOs including our member HERA, Macedonia’s government has committed to providing long-term funding for all HIV programmes for marginalised people. Just off a highway in downtown Skopje, halfway down a long concrete track, a middle-aged man stamps his feet before a door. He is here to pick up clean needles from a drop-in centre run by HOPS – Healthy Options Project Skopje – an NGO that provides drug users and sex workers with clean needles, contraception, information and advice. Inside, four women are busy packaging up needles, typing on computers and talking to clients. One of them is Silvana Naumova, a social worker and programme manager who has been working at HOPS since 2003. “Immediately after completing my studies of social work and policy, I started my work with sex workers,” Silvana says. “I was motivated because it was a group of people who had been marginalised and find themselves at the edge of society.” HOPS started life in the mid-nineties as a needle exchange programme for drug users, with the aim of preventing the spread of HIV. Spurred by the desperate needs of these people, it quickly evolved into a centre providing social welfare, medical services, legal aid, human rights campaigning, and educational workshops and services to support people’s basic needs of clothing and food. In 2000, it launched a programme for sex workers – both those working on the street, those employed in brothels and massage parlours, and those living in the Roma community of Šuto Orizari (Šutka) in the Skopje suburbs. The focus is on sexual health education, services and rights, but spans a broad gamut of social welfare and education services as well. There is a lot of crossover between these two groups: around a third of sex workers use drugs – usually heroin or methadone if they work on the streets, or cocaine, ecstasy, amphetamines and marijuana if they work “behind closed doors”. Some are forced to do drugs by clients. “We deal with the most marginalised groups of sex workers and drug users,” says Silvana. “They’re most marginalised in terms of lack of education in the first place – some of them have incomplete primary education; some of them do not attend school at all.” Through its close partnership with IPPF member HERA, too, HOPS builds links with young, marginalised people: young people using HERA services are referred on to HOPS if they are using drugs or are involved in sex work.  Many people have no idea how to exercise their rights to healthcare and social welfare, particularly if they are Roma, for whom language barriers and a lack of ID are major problems, she says. Violence and discrimination is a fact of life for many sex workers and drug users. “Sex workers working on the street are most exposed to violence … from their clients, the police passers by … domestic violence.” Drug users are often harassed or discriminated against because they are so easy to spot. Risky behaviour like having unprotected sex with long-term partners or sharing needles is widespread among drug users, Silvana says. The sex workers they support tend to look after themselves better. “As far as sex workers that we are in touch with are concerned, I can say that their knowledge about sexual and reproductive health and rights and how to protect themselves from HIV and STIs is at a very low level,” she says. Since HOPS began running sex worker support services, “the level has risen a lot”. Last year, HOPS supported around 230 sex workers, both through its drop-centres, mobile testing vans, and through outreach workers who offer support, contraception and advice to women working on the streets. “I think that if it weren’t for HOPS, the sex workers would not know that much about how to protect their health,” Silvana adds. She is currently working hard to ensure the organisation is sustainable and well-funded in the coming years, a goal made more difficult after the Global Fund phased out support for Macedonian HIV programmes in late 2016. Although HIV levels are not high in Macedonia, the fact that so many vulnerable groups rely on NGOs like HOPS – whose futures look more uncertain since the Global Fund withdrawal – make their safety and protection precarious. “If those services stopped, we are afraid there would be a pandemic.” Photo: Silvana Naumova outside the drug support clinic run by HOPS, credit: Jon Spaull / IPPF EN

Zoran Joranov, founder of EGAL, talks to HERA's Vojo Ivanof
20 July 2018

Reaching young men whose health and well-being are at risk

This article was written in September 2017. Since then, thanks to the work of NGOs including our member HERA, Macedonia’s government has committed to providing long-term funding for all HIV programmes for marginalised people. Back in 2004, Zoran Jordanov decided that someone needed to take action to support Macedonia’s LGBTI community and open up access to sexual health services. A close friend, a doctor at Macedonia’s Centre for Infectious Diseases, encouraged him to take a look into issues of HIV prevalence in the LGBTI community and the importance of prevention. This encouraged him to set up EGAL, Equality for Gays and Lesbians – Macedonia’s only community organisation focused exclusively on LGBTI sexual health and rights. The level of ignorance about sexual health and rights in Macedonia in general was astonishing, he says. “Not just in the gay community but among Macedonians in general, it’s very rare to talk about sexuality – no one broaches that topic.” HIV, too, “is a topic that is very hidden – no one speaks about it”. The staunchly patriarchal culture and ‘traditional values’ of Macedonian society mean that many gay people live under the radar. “There are a couple of challenges when you work in this totally hidden group in Macedonia,” Zoran explains. “And there are reasons why they are hidden – a lot of problems of stigma and discrimination, which are closely connecting to the traditions … in this part of the world, especially in Balkan countries.” One challenge is encouraging men, be they gay or straight, to open up about sexual health. “When we speak generally about sexual health with men, not just men who have sex with men, it’s much lower than the sexual health of women. Women … sometimes go to the gynaecologist when they’re pregnant or hit puberty or whatever, but men don’t use those kind of services at all. … they just go to the pharmacy and try to solve the problem directly. … they are embarrassed.” For gay or bisexual men, things become even more challenging. “They have the same behaviour as all other men but at the same time ... because they are hidden, they are at even bigger risk.” Attitudes to condoms are also a problem, he adds, with many perceiving them as a way of preventing pregnancy rather than as protection against sexual transmitted diseases. “When there are two men, they feel they don't need to use condoms.” Research in 2013/14 by IPPF member HERA, a leading sexual health organisation that focuses on young people's needs, revealed that just 47 per cent of men interviewed used a condom when they last had sex. Some men are even harder to reach because they might not identify as gay, but frequently have sex with men. Sex between men is particularly widespread within Macedonia’s Roma community, where around 70-80 per cent of men have their first sexual experience with another man, due to strict cultural norms about girls being virgins when they marry making them off-limits. “I’m very afraid that if HIV entered into this community, it would spread very quickly,” Zoran says.  Opening up links with the Roma can be a struggle: “Sometimes the Roma community can be very closed and actually a little bit difficult to enter the community as someone who is not Roma.” One strategy EGAL uses is to employ ‘gatekeepers’ – people from within a certain community who are trained up to act as links between a community and sexual health services. Other strategies include running drop-in centres, distributing information and running events, festivals and ‘movie nights’, where clients, social workers and psychologists come together to watch films and then discuss the issues they throw up. EGAL also works in close partnership with HERA. “We had a lot of help from them,” Zoran says. “We collaborate with them, we use their youth-friendly services and we refer our clients to their services.” EGAL also runs workshops for medical staff and HIV experts to make them more comfortable talking about homosexuality and better able to support young LGBTI people. This is vital work, not least because government training for sexual health care workers does not cover the specific needs of young people. The internet has made EGAL’s work more complicated, he adds. Until about five years ago, the best way to meet and support LGBTI people would be to head down to Skopje’s cruising areas. With the arrival of the internet, people began meeting online instead, which makes reaching people more difficult. “It’s much easier when you have face to face contact in the field – you have more opportunity to reach the people, to attract the people and to give them materials, as well as condoms and lubricants.” Another problem EGAL has is that young people are not legally allowed to access sexual health services until they are aged 18, unless they have permission from their parents. “It’s a boundary for us and it’s very difficult for us to cross,” Zoran says. “We know that sexual activities among people begin much earlier, and if you don't start with them from the beginning, working on how they can prevent themselves and protect themselves, then sometimes 18 years is too late.” Research shows that one third of sexually active men who have sex with men are under the age of 15, and almost three quarters are sexually active under 17. Shifting behaviour later on is much more difficult. This kind of work demands investments of time and money. Fundamentally, Zoran says, it requires conversation. “Changing behaviour – it’s not just with free access to condoms and lubricants and contraceptives. It needs more focus on talking with the client, and explaining a lot of other things, and showing them the way they can take care about their sexual health.” The organisation stands at a crossroads. In 2016, the Global Fund to Fight AIDS, Tuberculosis and Malaria, one of EGAL’s main backers, began phasing out funding for Macedonia.  This has left the organisation’s finances in crisis. Zoran hopes that the new government will step into at least some of the breach left by the Global Fund. “We really hope we will have a good agreement with the government and they will take care of some of our services – maybe not 100 per cent but some of them.” - This article was written in September 2017. Since then, thanks to the work of NGOs including HERA, Macedonia’s government has committed to providing long-term funding for all HIV programmes for marginalised people. - Photo: Zoran Joranov talks to HERA's Vojo Ivanof. Credit: Jon Spaull/IPPF EN

Sex worker Mihaela (not her real name) in Roma neighbourhood of Shuto Orizari.
20 July 2018

Sexual and reproductive health care a lifeline for mistreated communities - Mihaela's story

When Mihaela (not her real name) was six years old, her father sent her onto the streets to scavenge for food for the family and beg for money to fund his alcoholism treatment. “We were very poor,” she says. “I started going through containers, through dustbins. Then I started begging.” At nine, Mihaela dropped out of school. By the age of 16, she was selling sex. Mihaela grew up in Šuto Orizari – or Šutka – a sprawling, run-down neighbourhood on the edge of Macedonia’s capital, Skopje. Of the roughly 50,000 people living here, over three quarters are Roma. Šutka is a lively place, abuzz with the patter of market traders. But it also faces huge social problems, from poverty, unemployment and illiteracy to gender-based violence and poor health. The community is ill-served by state social services and healthcare, and Roma people are often denied access to state services due to stigma and discrimination. Mihaela married at 16 – a common age for girls in Šutka to marry. Roma tradition dictates that girls should be virgins upon marriage: Mihaela’s bedsheets were displayed outside the house after the wedding night for inspection by the community. She left her husband shortly after marrying and began selling sex. She would arrange to meet clients – non-Roma Macedonians – by telephone, and meet them “downtown” in central Skopje, about half an hour away. At 17, she married a Roma man from Kosovo and began a family: they now have six children, aged between two and ten. Life was tough. “My husband was unemployed. I continued my work because I had to make money. I started doing everything, and he was just being lazy. I supported the whole family –  I was working all day long, seeing two or three clients a day. In this community, women are the breadwinners.” Four months ago, Mihaela’s husband left for Serbia, ostensibly to get hold of ID documents. “I don’t know if he’s going to come back or not and I can hardly stand the situation,” she says. “I am alone with the six children and it’s really difficult for me. My children are starving. There’s no one to look after them.” Both Mihaela’s parents are now dead, and her only sibling, a brother, is blind and unable to help the family. “I don’t have any means of support,” she says. “Sometimes I want to hang myself.” Roma families are often large and contraception rarely used within marriage. Mihaela’s husband insisted sex should be “natural”, while misinformation also played a role: “my husband wouldn't allow me to use condoms during sex because he told me that I would catch an infection.” Abortion is frowned upon within the Roma community, while high fees and a controversial abortion law from 2013 make the procedure inaccessible for most.  “I had the first two children out of love,” Mihaela says. “But when I became pregnant for the third time, I wanted to have an abortion but my father-in-law wouldn’t let me because they come from Kosovo and abortion isn’t allowed in their culture.” Poverty forces her to work throughout each pregnancy, up until delivery. Mihaela’s eldest child, aged ten, now looks after the children in the evenings so she can go to work. Like many sex workers in Skopje, she meets clients on ‘Television Street’, on the north bank of the Vardar River, a short stroll from the city’s main square and tourist hotspots. Life for street sex workers in Skopje is perilous. “Sometimes when you refuse to do something the clients want, you get beaten up,” Mihaela describes. The police also harass the women. Mihaela earns between 500 and 1000 Macedonian denars a day – around US$ 9-19. “It’s not enough to feed six kids,” she says. She insists on using condoms with clients, and gets them free at the Šutka branch of I Want to Know, a sexual health centre run by IPPF member HERA, a leading Macedonian sexual health organisation. Like many sex workers, particularly those from the Roma community, Mihaela is almost entirely reliant on NGOs for her sexual health and contraception needs. She says she would be lost with the support of Nicolina Nikolovska, a social worker at the Šutka centre. “She organised IUDs [contraceptive coil] for me, provides condoms, advises me. If it weren’t for her, I would have been completely destroyed.” “I have had HIV tests done here with Nicolina and I swear by this organisation for everything – literally everything – smear tests, STI testing, HIV testing, guidance and advice.” Mihaela herself now acts as a “focal point”, encouraging other women to get HIV and STI tests at the centre or its mobile van. They are given brochures, contraception and lubricants as well as workshops on sexual health and rights. She hopes to stop sex work one day. “If there was something else, I would gladly leave this job,” she says.  “This is why I now teach my kids and make them understand that I am in a bad situation – so they can learn from my mistakes and not make the same mistakes.” “I wouldn’t want my children to do what I do, I wouldn’t want them to live how I live. That’s why I encourage them to go to school and get an education, move away from my life and learn from my mistakes, because I wouldn’t wish this on anyone, especially my kids.” Photo: Mihaela looks out over the Roma neighbourhood of Shuto Orizari, credit: Jon Spaull/IPPF EN This article was written in September 2017.   

IPPF EN launches new tool for HIV and sexual and reproductive health care for young people
01 December 2017

IPPF EN launches new tool for HIV and sexual and reproductive health care for young people

Eastern Europe and Central Asia is the only region in the world that did not achieve the global Millennium Development Goal on halting and reversing the AIDS epidemic by 2015. While the overall global number of HIV infections has declined by 35% since 2000, at the end of 2015 the overall trend of new HIV infections in this region continued to increase, with 190,000 new infections in 2015. This indicates that existing HIV prevention programmes have not had sufficient coverage or intensity to stem the spread of HIV in Eastern Europe and Central Asia. On World AIDS Day 2017, IPPF EN is proud to join our partner UNFPA EECARO in launching a new toolkit to support young people who are particularly vulnerable to HIV infection and are facing widespread stigma, discrimination and violence. “Health, rights and well-being” (see below) is a practical guide for programming on HIV and sexual and reproductive health care with young key populations in Eastern Europe and Central Asia. It was developed on the basis of discussions in eight countries with young people from groups that are most at risk of HIV infection: sex workers, drug users, men who have sex with men and prisoners. The toolkit describes the situations they face, policy and legal contexts, and includes examples of good practice and tips for implementing successful programmes from the young people themselves. We believe that it provides very practical support to all those of us working to ensure that the rights of these young people are met, that discrimination is stopped, and that they can fulfil their potential. The guide is designed for public health care professionals, health workers, managers of HIV and SRHR programmes and NGOs, including community groups. We hope that it will also be of interest for international funding organisations as well as advocates and decision-makers. In this short video, some of the people involved in creating this new guide explain what it is, and the contribution they hope it will make: 

aaron-burden-xG8IQMqMITM-unsplash_12.jpg
01 December 2017

Health, rights and well-being - new tool for HIV and SRH care for young people

This new toolkit aims to support young people in Eastern Europe and Central Asia who are particularly vulnerable to HIV infection and are facing widespread stigma, discrimination and violence. “Health, rights and well-being” is a practical guide for programming on HIV and sexual and reproductive health care with young key populations in Eastern Europe and Central Asia, available in both English and Russian. It was developed on the basis of discussions in eight countries with young people from groups that are most at risk of HIV infection: sex workers, drug users, men who have sex with men and prisoners. The toolkit describes the situations they face, policy and legal contexts, and includes examples of good practice and tips for implementing successful programmes from the young people themselves. We believe that it provides very practical support to all those working to ensure that the rights of these young people are met, that discrimination is stopped, and that they can fulfil their potential. The guide is designed for public health care professionals, health workers, managers of HIV and SRHR programmes and NGOs, including community groups. We hope that it will also be of interest for international funding organisations as well as advocates and decision-makers.  

Rumena Gjerdovska, Macedonia’s only social worker focused exclusively on supporting people with HIV, and one of the first HIV specialists people meet on diagnosis. 
01 December 2017

On the Frontline: Macedonia’s Only Social Worker Supporting People Living with HIV

This article was written in September 2017. Since then, thanks to the work of NGOs including our member HERA, Macedonia’s incoming socialist government has committed to providing long-term funding for all HIV programmes for marginalised people. Tucked away behind a line of trees in the grounds of Skopje’s University Hospital, lies a modest concrete building. This is the Clinic for Infectious Diseases, where people newly diagnosed with HIV come to access treatment and support. Deep in the basement of this building is the office of Rumena Gjerdovska, Macedonia’s only social worker focused exclusively on supporting people with HIV, and one of the first HIV specialists people meet on diagnosis.  Rumena’s interest in HIV was triggered as a young student. “It was an especially interesting topic for me because while I was studying social work had very little to do with HIV/AIDS and health issues,” she says.  “We were mainly dealing with child protection, divorce cases, children who were threatened socially.” The link between HIV/AIDS and social work was a new area. “Even nowadays people do not recognise how social work is connected with HIV/AIDS and health aspects,” she adds. She began volunteering for sexual health organisation and IPPF member HERA (Health and Research Association), mainly running the SOS hotline for people concerned about HIV. In the era before the internet was widely accessible and when government HIV services were skeletal, this hotline was often the first port of call for those with concerns. “Mainly I received calls from concerned parents, because parents were frightened of their children’s sexual behaviour and drug use,” she explains. In 2007, she joined the clinic. Ten years later, she remains a unique figure in the world of Macedonian sexual health and rights. “I’m the only one who has direct contact with these people and that is my main challenge,” she says. “That’s why I decided to get so deep into the matter.” When people test positive for HIV at a mobile van or clinic, they are then sent to the clinic in Skopje to confirm the diagnosis and, if confirmed, get support and begin treatment. The clinic remains the only place in Macedonia where people living with HIV can pick up medication. The first part of Rumena’s role is to break the news of positive diagnoses and explain how the Macedonian health system for people living with HIV works. When delivering a positive diagnosis, it’s important to remain calm, she says. “The manner in which you give the news is very, very important – it’s critical. If you know how to do it then you will calm them down and they will be willing to accept the situation.” She often finds herself up against a barrage of misinformation about HIV – stemming, she says, from Macedonia’s failure to teach children about sexual health. The silence and stigma surrounding HIV is another barrier. Many people in Macedonia “associate HIV with highly stigmatised behaviours such as sex work, drug use and being gay,” she says. “This is the reason people cannot get rid of the stigma that is related to HIV in society.” New clients are often familiar with how HIV is contracted. “However they have very little information about the availability of treatment. ... they may think that HIV is a death sentence and it is fatal and there is no cure for it. “But once we explain to them that treatment can be administered at home and it’s only pills that they should take regularly just like any chronic disease, the story changes and there is hope for them.” Their clients are mainly young and around 80 per cent are men – mostly gay men or men who who have sex with men (MSM). In 2014, of the 42 new people diagnosed with HIV, 30 were men. Rumena talks through any concerns people have, describes the services they will receive – from medication to counselling – refers them on to other services, and offers them psychosocial care. She also advises people on how to tell their families and friends about their diagnosis – a complicated issue in a country where stigma towards HIV remains extreme. “Experience has shown that they should not rush into disclosing their HIV status immediately to everyone they know but sleep on it, because sometimes they are betrayed by the closest ones and the gossip starts and their HIV status is disclosed very quickly. Then stigma and discrimination start.” Fundamental to Rumena’s work is ensuring a “continuum of care” – making sure that services and support are in place every step of the way, from diagnosis onwards. She also puts people in touch with organisations like Stronger Together, a network for people living with HIV to meet, chat and support each other. This ongoing support is crucial. “Everything looks nice at the beginning when we say to them that there is no need to be afraid, … they will be offered health services,” she says. “And all of a sudden they encounter an obstacle – for example they need to have an operation in a health facility and they will need to provide an HIV negative test.” Discrimination amongst Macedonia’s medical staff is a major problem. GPs are often reluctant to register patients with HIV: “they give excuses like ‘no, don’t send us HIV positive patients because we have small kids here... or ‘we cannot admit such a patient, the boss will be angry and won’t allow it’.” Surgeons frequently refuse to operate on HIV positive patients: “Once [patients] disclose their HIV positive status they are immediately denied the surgical intervention … and all of a sudden it appears that there are problems.” This is illegal, but still happens frequently. Cases of legal action against hospital staff are few and far between. “I’m afraid these people do not file any applications because they don’t believe in the judicial system. … they don’t believe their cases will be won in the end so they give up” she says. The fact that legal action will involve disclosing their status to lawyers, court clerks and the entire system is also a major deterrent. It is vital to keep up pressure on the government and authorities to ensure people living with HIV are not denied treatment, she says. She also calls for laws protecting the rights and privacy of people living with HIV, in part by penalising those who violate their right to privacy. More resources for HIV services are also vital, she adds. “I think the primary need here is to strengthen the team that is working in the hospital since the number of HIV positive people is rising on a daily basis and the team is too small to be able to meet all the needs.” Photo credit: John Spaull/ IPPF EN

"Mirror,mirror on the wall who's the most affected of them all?" Bojan holds up a mirror as part of a HIV campaign, photographed at the Clinic for Infectious Diseases, Skopje.
01 December 2017

Living with HIV in a Society of Rampant Homophobia and Stigma

This article was written in September 2017. Since then, thanks to the work of NGOs including our member HERA, Macedonia’s incoming socialist government has committed to providing long-term funding for all HIV programmes for marginalised people. “I remember when I was little, there was one very stigmatising ad on Macedonian TV about how to protect yourself from HIV,” recalls philosophy student Bojan. “It was really scary. It was like: ‘Do you know that in every discotheque you go to, there is at least one HIV positive person? In every school, in every university .... HIV means a really short life, HIV is a monster.’  “This was also my first picture of HIV. I was about 11 years old.” Today, Bojan is a tall, confident 23-year-old. Two years ago, he was diagnosed with HIV. After his partner told him that he had tested positive, Bojan spent a month preparing himself to get tested. “I was 99.9 percent sure that I was already HIV positive, so I had a little time to prepare myself for what to expect, I had time to cope.” Bojan went to the Clinic for Infectious Diseases, Macedonia’s main centre for HIV testing and services, where he was diagnosed and met Rumena Gjerdovska, a former volunteer with IPPF member HERA (Health Education and Research Association), and Macedonia’s only social worker focused exclusively on HIV. Like all people registered as living with HIV in Macedonia, Bojan picks up his medication and has regular check-ups at the Clinic for Infectious Diseases. He also remains in regular contact with social worker Rumena. “If Macedonia awards a Nobel Prize for a social worker, the award must be in her name,” he says. Taboos and stigma around HIV mean that Bojan still feels unable to tell his family about his diagnosis. But, as a young, well-educated student, he says he harbours few fears about the disease. “These days HIV is much more well-managed. The scientists are searching for a cure …  western society is working very hard to destigmatise the disease.” Things are very different in Macedonia. Myths and misinformation about HIV are rife, Bojan says – a problem stemming from the chronic lack of public information and education on HIV and AIDS. “Older people still think that if you get HIV you will die the same week that you acquire it,” he says. “They immediately assume that you are gay, like this goes together with [HIV]. “There are also a very high number of older people who think that if you get HIV, this is your punishment for bad things that you did, for low morals,” Bojan says. Growing up, he says, there was an no sexuality education in school at all, which has fed into the myths and misinformation surrounding HIV. The media doesn’t help to dispel these myths. Newspapers, radio and TV rarely report on it, he says: “It’s total silence.” What media coverage there is has largely been negative, backed up by the anti-LGBTI campaigns from Macedonia’s former government, in power until June 2017. The internet and NGOs are the only real source of reliable information on living with HIV, he adds. Discrimination is also pervasive in the health services. Bojan mentions one friend who was turned down for an operation because of their HIV status. HIV services exist but are poorly resourced and understaffed, partly due to some medical staff avoiding coming face to face with HIV positive patients. There is only one doctor in Macedonia specialising in HIV, Milena Stefanovic, Boyan explains. “She really tries hard. She is like our mother. She [does] everything, everything.” “I see my GP as well but I can’t speak to her in the same way that I can speak with Milena. She is the one who really knows what this means, what my problem is when I say this hurts me.” Another problem encountered at the GP’s surgery is patient confidentiality – or the lack of. Patient files are stored manually, and doctors often leave patients’ files lying around so that anyone could catch sight of them, Bojan says. Given the taboo and stigma around the disease, this lack of privacy discourages people living with HIV from using public healthcare. Most people living with HIV rely on NGOs to top up their care, particularly when it comes to support services and counselling. When he was first diagnosed, Bojan used a service called Stronger Together, a support network for people living with HIV that grew out of HERA. “[Through Stronger Together] I was speaking with another HIV positive person. And this really helped me a lot, because you know you read things on the internet [about how] you can manage this, it’s not terrible, you will be ok, you will live a nearly normal life with these therapies,” he says. “But I needed someone to tell me in my own language, a personal touch.” “My key message would be: test yourself today because every day of life gives you more time for living, if you start with treatment early. If you are HIV positive, don’t be afraid of it and find people you can speak with yourself. “It did change my life for sure, but I learned to love my life more and to take care of myself now.” Photo: John Spaull/ IPPF EN

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30 November 2017

Photo Gallery: Rising HIV numbers and funding cutbacks - Macedonia at the crossroads

This article was written in September 2017. Since then, thanks to the work of NGOs including our member HERA, Macedonia’s government has committed to providing long-term funding for all HIV programmes for marginalised people. Although HIV prevalence is low in Macedonia, with only 151 people registered as living with HIV, these small numbers mask a complex picture, and one that is rapidly changing. In 2016, there were 40 new HIV diagnoses, the majority of them among men who have sex with men.  Macedonia is not alone in facing a rise in HIV cases. In many parts of Central and Eastern Europe, the rate of new infections is growing. Between 2010 and 2015, the region saw a 50 per cent rise in new HIV infections annually. Another looming problem that threatens to send Macedonian HIV rates spiralling upwards is a funding crisis precipitated by donor cutbacks and political uncertainty. Between 2004 and 2016, Macedonian HIV programmes received almost $25 million from the Global Fund to Fight AIDS, Tuberculosis and Malaria. Much of this money was channelled into HIV prevention, funding NGOs that target those deemed most vulnerable to infection – sex workers, people who inject drugs, men who have sex with men and prisoners. But in 2016 this funding was phased out and NGOs on the frontline are left hoping that the new government will deliver fully on a recent commitment to step in with similar levels of funding in 2018. In the chasm left by the country’s public healthcare system, Macedonia’s sexual health and rights NGOs work tirelessly to plug the gap, often on a shoestring and in an increasingly uncertain funding landscape. HERA, IPPF's member in Macedonia, is a leading NGO providing free HIV testing services, sexual health support and advocacy. It works closely with smaller organisations around the country to ensure support for young people, sex workers, people who inject drugs and men who have sex with men. These NGOs are many people’s first port of call for HIV tests and other vital health care.  

IPPF EN's Caroline Hickson and Rutgers at AIDS2018 pre-conference on SRHR
25 July 2018

We need a conspiracy of hope, fueled by outrage, which won’t take no for an answer!

IPPF EN's Caroline Hickson on what she took away from this week's AIDS2018 pre-conference on sexual and reproductive health and rights. Our bodies aren’t divided into sectors. So how can we cross the self-created gulf between those who work to defeat HIV and AIDS, and those who fight for sexual and reproductive health and rights for all? At this week’s International AIDS Conference, IPPF, Rutgers and partners joined forces to debate the issue, inspire fresh thinking and drive collaborative action at the first ever pre-conference dealing with this issue. At the end of the day, the answer didn’t seem too complicated.  It was said over and over again, by different speakers: it is as simple as putting the human experience back at the centre of all we do. Compelling stories came through loud and clear:  Jacob Thomas from Australia described the hurt experienced as a young student, a virgin, when a doctor refused treatment for an ordinary chest infection. Instead, having asked about Jacob’s sexuality, the doctor insisted on an HIV test being administered. “After I told him I was gay, he never once looked straight at me”.  The result for Jacob?  Confusion, shame, and a lifelong mistrust of doctors. Lada Nuzhna, an 18-year-old activist from Ukraine, conveyed the loneliness of teenagers who live with HIV in her country.  While their peers are experiencing the excitement of first love, they tell her they are too frightened to even kiss someone in case they give them HIV. Simran, a transgender sex worker from India, passionately defended the fact that “I, and only I, decide who I am’’. A photo from the first AIDS Conference in 1992 was doing the rounds on social media, a massive floor to ceiling quilt of names of those who had lost their lives to AIDS.  It reminds us that love and loss, those things at the core of our humanity, are what have driven the intensity of the AIDS response. That is why, as Rutgers’ Ton Coenen put it, “HIV organisations don’t take no for an answer”. Robin Gorna of She Decides spoke of becoming an AIDS activist because of the outrage that she felt on seeing her friends dying: “We must continue to be outraged, to be driven by evidence-based outrage”. This evidence lies in numbers, but more importantly it also lies in people’s stories. The stories which have the power to awake our indignation and our anger, our empathy and our generosity of heart.  We must bring those stories to the fore and let them help people understand what it really means not to have any power over your own life, to have your sexual and reproductive freedom stifled, to be forced through pregnancy, to be willfully kept illiterate about intimacy and endangered through lack of knowledge about sexuality. Because it is these abuses and cruelties that contribute to HIV and other sexually transmitted infections, to unintended pregnancies, to violence against women, to the marginalisation of people who are transgender, to maternal deaths…  The recent Guttmacher–Lancet Commission report finds that there is no health without rights. And those rights begin long before the diagnosis of HIV, long before the need for abortion, long before an attack on a transgender individual. If we want to cure the symptoms caused by the denial of human rights, civil society organisations and activists must work together from the get-go.  We need a new and ‘visionary generosity’, said Javier Hourcade Bellocq of GNP+, based on what needs to be done for people and not for our organisations. HIV organisations need to take the plunge to talk about abortion.  SRHR organisations need to prioritise key populations, the groups most vulnerable to HIV. And together, said Alvaro Bermejo of IPPF, we must work to see what it takes to mobilise the resistance. Robin Gorna perhaps coined it best – let’s launch a conspiracy of hope! This may well be the phrase that lingers in people’s minds as they spend the rest of the week in Amsterdam. A conspiracy of hope, fueled by evidence-based outrage, which won’t take no for an answer! Until HIV is no more, and every person can live a fulfilled and free emotional and intimate life. Photo: Caroline Hickson and Ton Coenen join a panel discussion at the SRHR pre-conference. Credit: Rutgers.  

HIV
20 July 2018

IPPF EN cares: Supporting neglected communities in Eastern Europe and Central Asia

In many countries in Eastern Europe and Central Asia, young people from marginalised groups most vulnerable to HIV are being harmed by high levels of violence, discrimination and stigma, and it is enormously difficult for them to access the care they need. This is the only region in the world where the HIV epidemic continues to rise rapidly, and yet many governments are failing to take action. IPPF EN champions free, safe and dignified lives for all people, especially those who are neglected by their governments and the societies they live in. Find out more about about how we are empowering and improving care for marginalised young people in Eastern Europe and Central Asia.  

Silvana Naumova, HOPS programme manager, outside drug support clinic
20 July 2018

Battling to ensure stigma-free care for young drug users and sex workers

This article was written in September 2017. Since then, thanks to the work of NGOs including our member HERA, Macedonia’s government has committed to providing long-term funding for all HIV programmes for marginalised people. Just off a highway in downtown Skopje, halfway down a long concrete track, a middle-aged man stamps his feet before a door. He is here to pick up clean needles from a drop-in centre run by HOPS – Healthy Options Project Skopje – an NGO that provides drug users and sex workers with clean needles, contraception, information and advice. Inside, four women are busy packaging up needles, typing on computers and talking to clients. One of them is Silvana Naumova, a social worker and programme manager who has been working at HOPS since 2003. “Immediately after completing my studies of social work and policy, I started my work with sex workers,” Silvana says. “I was motivated because it was a group of people who had been marginalised and find themselves at the edge of society.” HOPS started life in the mid-nineties as a needle exchange programme for drug users, with the aim of preventing the spread of HIV. Spurred by the desperate needs of these people, it quickly evolved into a centre providing social welfare, medical services, legal aid, human rights campaigning, and educational workshops and services to support people’s basic needs of clothing and food. In 2000, it launched a programme for sex workers – both those working on the street, those employed in brothels and massage parlours, and those living in the Roma community of Šuto Orizari (Šutka) in the Skopje suburbs. The focus is on sexual health education, services and rights, but spans a broad gamut of social welfare and education services as well. There is a lot of crossover between these two groups: around a third of sex workers use drugs – usually heroin or methadone if they work on the streets, or cocaine, ecstasy, amphetamines and marijuana if they work “behind closed doors”. Some are forced to do drugs by clients. “We deal with the most marginalised groups of sex workers and drug users,” says Silvana. “They’re most marginalised in terms of lack of education in the first place – some of them have incomplete primary education; some of them do not attend school at all.” Through its close partnership with IPPF member HERA, too, HOPS builds links with young, marginalised people: young people using HERA services are referred on to HOPS if they are using drugs or are involved in sex work.  Many people have no idea how to exercise their rights to healthcare and social welfare, particularly if they are Roma, for whom language barriers and a lack of ID are major problems, she says. Violence and discrimination is a fact of life for many sex workers and drug users. “Sex workers working on the street are most exposed to violence … from their clients, the police passers by … domestic violence.” Drug users are often harassed or discriminated against because they are so easy to spot. Risky behaviour like having unprotected sex with long-term partners or sharing needles is widespread among drug users, Silvana says. The sex workers they support tend to look after themselves better. “As far as sex workers that we are in touch with are concerned, I can say that their knowledge about sexual and reproductive health and rights and how to protect themselves from HIV and STIs is at a very low level,” she says. Since HOPS began running sex worker support services, “the level has risen a lot”. Last year, HOPS supported around 230 sex workers, both through its drop-centres, mobile testing vans, and through outreach workers who offer support, contraception and advice to women working on the streets. “I think that if it weren’t for HOPS, the sex workers would not know that much about how to protect their health,” Silvana adds. She is currently working hard to ensure the organisation is sustainable and well-funded in the coming years, a goal made more difficult after the Global Fund phased out support for Macedonian HIV programmes in late 2016. Although HIV levels are not high in Macedonia, the fact that so many vulnerable groups rely on NGOs like HOPS – whose futures look more uncertain since the Global Fund withdrawal – make their safety and protection precarious. “If those services stopped, we are afraid there would be a pandemic.” Photo: Silvana Naumova outside the drug support clinic run by HOPS, credit: Jon Spaull / IPPF EN

Zoran Joranov, founder of EGAL, talks to HERA's Vojo Ivanof
20 July 2018

Reaching young men whose health and well-being are at risk

This article was written in September 2017. Since then, thanks to the work of NGOs including our member HERA, Macedonia’s government has committed to providing long-term funding for all HIV programmes for marginalised people. Back in 2004, Zoran Jordanov decided that someone needed to take action to support Macedonia’s LGBTI community and open up access to sexual health services. A close friend, a doctor at Macedonia’s Centre for Infectious Diseases, encouraged him to take a look into issues of HIV prevalence in the LGBTI community and the importance of prevention. This encouraged him to set up EGAL, Equality for Gays and Lesbians – Macedonia’s only community organisation focused exclusively on LGBTI sexual health and rights. The level of ignorance about sexual health and rights in Macedonia in general was astonishing, he says. “Not just in the gay community but among Macedonians in general, it’s very rare to talk about sexuality – no one broaches that topic.” HIV, too, “is a topic that is very hidden – no one speaks about it”. The staunchly patriarchal culture and ‘traditional values’ of Macedonian society mean that many gay people live under the radar. “There are a couple of challenges when you work in this totally hidden group in Macedonia,” Zoran explains. “And there are reasons why they are hidden – a lot of problems of stigma and discrimination, which are closely connecting to the traditions … in this part of the world, especially in Balkan countries.” One challenge is encouraging men, be they gay or straight, to open up about sexual health. “When we speak generally about sexual health with men, not just men who have sex with men, it’s much lower than the sexual health of women. Women … sometimes go to the gynaecologist when they’re pregnant or hit puberty or whatever, but men don’t use those kind of services at all. … they just go to the pharmacy and try to solve the problem directly. … they are embarrassed.” For gay or bisexual men, things become even more challenging. “They have the same behaviour as all other men but at the same time ... because they are hidden, they are at even bigger risk.” Attitudes to condoms are also a problem, he adds, with many perceiving them as a way of preventing pregnancy rather than as protection against sexual transmitted diseases. “When there are two men, they feel they don't need to use condoms.” Research in 2013/14 by IPPF member HERA, a leading sexual health organisation that focuses on young people's needs, revealed that just 47 per cent of men interviewed used a condom when they last had sex. Some men are even harder to reach because they might not identify as gay, but frequently have sex with men. Sex between men is particularly widespread within Macedonia’s Roma community, where around 70-80 per cent of men have their first sexual experience with another man, due to strict cultural norms about girls being virgins when they marry making them off-limits. “I’m very afraid that if HIV entered into this community, it would spread very quickly,” Zoran says.  Opening up links with the Roma can be a struggle: “Sometimes the Roma community can be very closed and actually a little bit difficult to enter the community as someone who is not Roma.” One strategy EGAL uses is to employ ‘gatekeepers’ – people from within a certain community who are trained up to act as links between a community and sexual health services. Other strategies include running drop-in centres, distributing information and running events, festivals and ‘movie nights’, where clients, social workers and psychologists come together to watch films and then discuss the issues they throw up. EGAL also works in close partnership with HERA. “We had a lot of help from them,” Zoran says. “We collaborate with them, we use their youth-friendly services and we refer our clients to their services.” EGAL also runs workshops for medical staff and HIV experts to make them more comfortable talking about homosexuality and better able to support young LGBTI people. This is vital work, not least because government training for sexual health care workers does not cover the specific needs of young people. The internet has made EGAL’s work more complicated, he adds. Until about five years ago, the best way to meet and support LGBTI people would be to head down to Skopje’s cruising areas. With the arrival of the internet, people began meeting online instead, which makes reaching people more difficult. “It’s much easier when you have face to face contact in the field – you have more opportunity to reach the people, to attract the people and to give them materials, as well as condoms and lubricants.” Another problem EGAL has is that young people are not legally allowed to access sexual health services until they are aged 18, unless they have permission from their parents. “It’s a boundary for us and it’s very difficult for us to cross,” Zoran says. “We know that sexual activities among people begin much earlier, and if you don't start with them from the beginning, working on how they can prevent themselves and protect themselves, then sometimes 18 years is too late.” Research shows that one third of sexually active men who have sex with men are under the age of 15, and almost three quarters are sexually active under 17. Shifting behaviour later on is much more difficult. This kind of work demands investments of time and money. Fundamentally, Zoran says, it requires conversation. “Changing behaviour – it’s not just with free access to condoms and lubricants and contraceptives. It needs more focus on talking with the client, and explaining a lot of other things, and showing them the way they can take care about their sexual health.” The organisation stands at a crossroads. In 2016, the Global Fund to Fight AIDS, Tuberculosis and Malaria, one of EGAL’s main backers, began phasing out funding for Macedonia.  This has left the organisation’s finances in crisis. Zoran hopes that the new government will step into at least some of the breach left by the Global Fund. “We really hope we will have a good agreement with the government and they will take care of some of our services – maybe not 100 per cent but some of them.” - This article was written in September 2017. Since then, thanks to the work of NGOs including HERA, Macedonia’s government has committed to providing long-term funding for all HIV programmes for marginalised people. - Photo: Zoran Joranov talks to HERA's Vojo Ivanof. Credit: Jon Spaull/IPPF EN

Sex worker Mihaela (not her real name) in Roma neighbourhood of Shuto Orizari.
20 July 2018

Sexual and reproductive health care a lifeline for mistreated communities - Mihaela's story

When Mihaela (not her real name) was six years old, her father sent her onto the streets to scavenge for food for the family and beg for money to fund his alcoholism treatment. “We were very poor,” she says. “I started going through containers, through dustbins. Then I started begging.” At nine, Mihaela dropped out of school. By the age of 16, she was selling sex. Mihaela grew up in Šuto Orizari – or Šutka – a sprawling, run-down neighbourhood on the edge of Macedonia’s capital, Skopje. Of the roughly 50,000 people living here, over three quarters are Roma. Šutka is a lively place, abuzz with the patter of market traders. But it also faces huge social problems, from poverty, unemployment and illiteracy to gender-based violence and poor health. The community is ill-served by state social services and healthcare, and Roma people are often denied access to state services due to stigma and discrimination. Mihaela married at 16 – a common age for girls in Šutka to marry. Roma tradition dictates that girls should be virgins upon marriage: Mihaela’s bedsheets were displayed outside the house after the wedding night for inspection by the community. She left her husband shortly after marrying and began selling sex. She would arrange to meet clients – non-Roma Macedonians – by telephone, and meet them “downtown” in central Skopje, about half an hour away. At 17, she married a Roma man from Kosovo and began a family: they now have six children, aged between two and ten. Life was tough. “My husband was unemployed. I continued my work because I had to make money. I started doing everything, and he was just being lazy. I supported the whole family –  I was working all day long, seeing two or three clients a day. In this community, women are the breadwinners.” Four months ago, Mihaela’s husband left for Serbia, ostensibly to get hold of ID documents. “I don’t know if he’s going to come back or not and I can hardly stand the situation,” she says. “I am alone with the six children and it’s really difficult for me. My children are starving. There’s no one to look after them.” Both Mihaela’s parents are now dead, and her only sibling, a brother, is blind and unable to help the family. “I don’t have any means of support,” she says. “Sometimes I want to hang myself.” Roma families are often large and contraception rarely used within marriage. Mihaela’s husband insisted sex should be “natural”, while misinformation also played a role: “my husband wouldn't allow me to use condoms during sex because he told me that I would catch an infection.” Abortion is frowned upon within the Roma community, while high fees and a controversial abortion law from 2013 make the procedure inaccessible for most.  “I had the first two children out of love,” Mihaela says. “But when I became pregnant for the third time, I wanted to have an abortion but my father-in-law wouldn’t let me because they come from Kosovo and abortion isn’t allowed in their culture.” Poverty forces her to work throughout each pregnancy, up until delivery. Mihaela’s eldest child, aged ten, now looks after the children in the evenings so she can go to work. Like many sex workers in Skopje, she meets clients on ‘Television Street’, on the north bank of the Vardar River, a short stroll from the city’s main square and tourist hotspots. Life for street sex workers in Skopje is perilous. “Sometimes when you refuse to do something the clients want, you get beaten up,” Mihaela describes. The police also harass the women. Mihaela earns between 500 and 1000 Macedonian denars a day – around US$ 9-19. “It’s not enough to feed six kids,” she says. She insists on using condoms with clients, and gets them free at the Šutka branch of I Want to Know, a sexual health centre run by IPPF member HERA, a leading Macedonian sexual health organisation. Like many sex workers, particularly those from the Roma community, Mihaela is almost entirely reliant on NGOs for her sexual health and contraception needs. She says she would be lost with the support of Nicolina Nikolovska, a social worker at the Šutka centre. “She organised IUDs [contraceptive coil] for me, provides condoms, advises me. If it weren’t for her, I would have been completely destroyed.” “I have had HIV tests done here with Nicolina and I swear by this organisation for everything – literally everything – smear tests, STI testing, HIV testing, guidance and advice.” Mihaela herself now acts as a “focal point”, encouraging other women to get HIV and STI tests at the centre or its mobile van. They are given brochures, contraception and lubricants as well as workshops on sexual health and rights. She hopes to stop sex work one day. “If there was something else, I would gladly leave this job,” she says.  “This is why I now teach my kids and make them understand that I am in a bad situation – so they can learn from my mistakes and not make the same mistakes.” “I wouldn’t want my children to do what I do, I wouldn’t want them to live how I live. That’s why I encourage them to go to school and get an education, move away from my life and learn from my mistakes, because I wouldn’t wish this on anyone, especially my kids.” Photo: Mihaela looks out over the Roma neighbourhood of Shuto Orizari, credit: Jon Spaull/IPPF EN This article was written in September 2017.   

IPPF EN launches new tool for HIV and sexual and reproductive health care for young people
01 December 2017

IPPF EN launches new tool for HIV and sexual and reproductive health care for young people

Eastern Europe and Central Asia is the only region in the world that did not achieve the global Millennium Development Goal on halting and reversing the AIDS epidemic by 2015. While the overall global number of HIV infections has declined by 35% since 2000, at the end of 2015 the overall trend of new HIV infections in this region continued to increase, with 190,000 new infections in 2015. This indicates that existing HIV prevention programmes have not had sufficient coverage or intensity to stem the spread of HIV in Eastern Europe and Central Asia. On World AIDS Day 2017, IPPF EN is proud to join our partner UNFPA EECARO in launching a new toolkit to support young people who are particularly vulnerable to HIV infection and are facing widespread stigma, discrimination and violence. “Health, rights and well-being” (see below) is a practical guide for programming on HIV and sexual and reproductive health care with young key populations in Eastern Europe and Central Asia. It was developed on the basis of discussions in eight countries with young people from groups that are most at risk of HIV infection: sex workers, drug users, men who have sex with men and prisoners. The toolkit describes the situations they face, policy and legal contexts, and includes examples of good practice and tips for implementing successful programmes from the young people themselves. We believe that it provides very practical support to all those of us working to ensure that the rights of these young people are met, that discrimination is stopped, and that they can fulfil their potential. The guide is designed for public health care professionals, health workers, managers of HIV and SRHR programmes and NGOs, including community groups. We hope that it will also be of interest for international funding organisations as well as advocates and decision-makers. In this short video, some of the people involved in creating this new guide explain what it is, and the contribution they hope it will make: 

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01 December 2017

Health, rights and well-being - new tool for HIV and SRH care for young people

This new toolkit aims to support young people in Eastern Europe and Central Asia who are particularly vulnerable to HIV infection and are facing widespread stigma, discrimination and violence. “Health, rights and well-being” is a practical guide for programming on HIV and sexual and reproductive health care with young key populations in Eastern Europe and Central Asia, available in both English and Russian. It was developed on the basis of discussions in eight countries with young people from groups that are most at risk of HIV infection: sex workers, drug users, men who have sex with men and prisoners. The toolkit describes the situations they face, policy and legal contexts, and includes examples of good practice and tips for implementing successful programmes from the young people themselves. We believe that it provides very practical support to all those working to ensure that the rights of these young people are met, that discrimination is stopped, and that they can fulfil their potential. The guide is designed for public health care professionals, health workers, managers of HIV and SRHR programmes and NGOs, including community groups. We hope that it will also be of interest for international funding organisations as well as advocates and decision-makers.  

Rumena Gjerdovska, Macedonia’s only social worker focused exclusively on supporting people with HIV, and one of the first HIV specialists people meet on diagnosis. 
01 December 2017

On the Frontline: Macedonia’s Only Social Worker Supporting People Living with HIV

This article was written in September 2017. Since then, thanks to the work of NGOs including our member HERA, Macedonia’s incoming socialist government has committed to providing long-term funding for all HIV programmes for marginalised people. Tucked away behind a line of trees in the grounds of Skopje’s University Hospital, lies a modest concrete building. This is the Clinic for Infectious Diseases, where people newly diagnosed with HIV come to access treatment and support. Deep in the basement of this building is the office of Rumena Gjerdovska, Macedonia’s only social worker focused exclusively on supporting people with HIV, and one of the first HIV specialists people meet on diagnosis.  Rumena’s interest in HIV was triggered as a young student. “It was an especially interesting topic for me because while I was studying social work had very little to do with HIV/AIDS and health issues,” she says.  “We were mainly dealing with child protection, divorce cases, children who were threatened socially.” The link between HIV/AIDS and social work was a new area. “Even nowadays people do not recognise how social work is connected with HIV/AIDS and health aspects,” she adds. She began volunteering for sexual health organisation and IPPF member HERA (Health and Research Association), mainly running the SOS hotline for people concerned about HIV. In the era before the internet was widely accessible and when government HIV services were skeletal, this hotline was often the first port of call for those with concerns. “Mainly I received calls from concerned parents, because parents were frightened of their children’s sexual behaviour and drug use,” she explains. In 2007, she joined the clinic. Ten years later, she remains a unique figure in the world of Macedonian sexual health and rights. “I’m the only one who has direct contact with these people and that is my main challenge,” she says. “That’s why I decided to get so deep into the matter.” When people test positive for HIV at a mobile van or clinic, they are then sent to the clinic in Skopje to confirm the diagnosis and, if confirmed, get support and begin treatment. The clinic remains the only place in Macedonia where people living with HIV can pick up medication. The first part of Rumena’s role is to break the news of positive diagnoses and explain how the Macedonian health system for people living with HIV works. When delivering a positive diagnosis, it’s important to remain calm, she says. “The manner in which you give the news is very, very important – it’s critical. If you know how to do it then you will calm them down and they will be willing to accept the situation.” She often finds herself up against a barrage of misinformation about HIV – stemming, she says, from Macedonia’s failure to teach children about sexual health. The silence and stigma surrounding HIV is another barrier. Many people in Macedonia “associate HIV with highly stigmatised behaviours such as sex work, drug use and being gay,” she says. “This is the reason people cannot get rid of the stigma that is related to HIV in society.” New clients are often familiar with how HIV is contracted. “However they have very little information about the availability of treatment. ... they may think that HIV is a death sentence and it is fatal and there is no cure for it. “But once we explain to them that treatment can be administered at home and it’s only pills that they should take regularly just like any chronic disease, the story changes and there is hope for them.” Their clients are mainly young and around 80 per cent are men – mostly gay men or men who who have sex with men (MSM). In 2014, of the 42 new people diagnosed with HIV, 30 were men. Rumena talks through any concerns people have, describes the services they will receive – from medication to counselling – refers them on to other services, and offers them psychosocial care. She also advises people on how to tell their families and friends about their diagnosis – a complicated issue in a country where stigma towards HIV remains extreme. “Experience has shown that they should not rush into disclosing their HIV status immediately to everyone they know but sleep on it, because sometimes they are betrayed by the closest ones and the gossip starts and their HIV status is disclosed very quickly. Then stigma and discrimination start.” Fundamental to Rumena’s work is ensuring a “continuum of care” – making sure that services and support are in place every step of the way, from diagnosis onwards. She also puts people in touch with organisations like Stronger Together, a network for people living with HIV to meet, chat and support each other. This ongoing support is crucial. “Everything looks nice at the beginning when we say to them that there is no need to be afraid, … they will be offered health services,” she says. “And all of a sudden they encounter an obstacle – for example they need to have an operation in a health facility and they will need to provide an HIV negative test.” Discrimination amongst Macedonia’s medical staff is a major problem. GPs are often reluctant to register patients with HIV: “they give excuses like ‘no, don’t send us HIV positive patients because we have small kids here... or ‘we cannot admit such a patient, the boss will be angry and won’t allow it’.” Surgeons frequently refuse to operate on HIV positive patients: “Once [patients] disclose their HIV positive status they are immediately denied the surgical intervention … and all of a sudden it appears that there are problems.” This is illegal, but still happens frequently. Cases of legal action against hospital staff are few and far between. “I’m afraid these people do not file any applications because they don’t believe in the judicial system. … they don’t believe their cases will be won in the end so they give up” she says. The fact that legal action will involve disclosing their status to lawyers, court clerks and the entire system is also a major deterrent. It is vital to keep up pressure on the government and authorities to ensure people living with HIV are not denied treatment, she says. She also calls for laws protecting the rights and privacy of people living with HIV, in part by penalising those who violate their right to privacy. More resources for HIV services are also vital, she adds. “I think the primary need here is to strengthen the team that is working in the hospital since the number of HIV positive people is rising on a daily basis and the team is too small to be able to meet all the needs.” Photo credit: John Spaull/ IPPF EN

"Mirror,mirror on the wall who's the most affected of them all?" Bojan holds up a mirror as part of a HIV campaign, photographed at the Clinic for Infectious Diseases, Skopje.
01 December 2017

Living with HIV in a Society of Rampant Homophobia and Stigma

This article was written in September 2017. Since then, thanks to the work of NGOs including our member HERA, Macedonia’s incoming socialist government has committed to providing long-term funding for all HIV programmes for marginalised people. “I remember when I was little, there was one very stigmatising ad on Macedonian TV about how to protect yourself from HIV,” recalls philosophy student Bojan. “It was really scary. It was like: ‘Do you know that in every discotheque you go to, there is at least one HIV positive person? In every school, in every university .... HIV means a really short life, HIV is a monster.’  “This was also my first picture of HIV. I was about 11 years old.” Today, Bojan is a tall, confident 23-year-old. Two years ago, he was diagnosed with HIV. After his partner told him that he had tested positive, Bojan spent a month preparing himself to get tested. “I was 99.9 percent sure that I was already HIV positive, so I had a little time to prepare myself for what to expect, I had time to cope.” Bojan went to the Clinic for Infectious Diseases, Macedonia’s main centre for HIV testing and services, where he was diagnosed and met Rumena Gjerdovska, a former volunteer with IPPF member HERA (Health Education and Research Association), and Macedonia’s only social worker focused exclusively on HIV. Like all people registered as living with HIV in Macedonia, Bojan picks up his medication and has regular check-ups at the Clinic for Infectious Diseases. He also remains in regular contact with social worker Rumena. “If Macedonia awards a Nobel Prize for a social worker, the award must be in her name,” he says. Taboos and stigma around HIV mean that Bojan still feels unable to tell his family about his diagnosis. But, as a young, well-educated student, he says he harbours few fears about the disease. “These days HIV is much more well-managed. The scientists are searching for a cure …  western society is working very hard to destigmatise the disease.” Things are very different in Macedonia. Myths and misinformation about HIV are rife, Bojan says – a problem stemming from the chronic lack of public information and education on HIV and AIDS. “Older people still think that if you get HIV you will die the same week that you acquire it,” he says. “They immediately assume that you are gay, like this goes together with [HIV]. “There are also a very high number of older people who think that if you get HIV, this is your punishment for bad things that you did, for low morals,” Bojan says. Growing up, he says, there was an no sexuality education in school at all, which has fed into the myths and misinformation surrounding HIV. The media doesn’t help to dispel these myths. Newspapers, radio and TV rarely report on it, he says: “It’s total silence.” What media coverage there is has largely been negative, backed up by the anti-LGBTI campaigns from Macedonia’s former government, in power until June 2017. The internet and NGOs are the only real source of reliable information on living with HIV, he adds. Discrimination is also pervasive in the health services. Bojan mentions one friend who was turned down for an operation because of their HIV status. HIV services exist but are poorly resourced and understaffed, partly due to some medical staff avoiding coming face to face with HIV positive patients. There is only one doctor in Macedonia specialising in HIV, Milena Stefanovic, Boyan explains. “She really tries hard. She is like our mother. She [does] everything, everything.” “I see my GP as well but I can’t speak to her in the same way that I can speak with Milena. She is the one who really knows what this means, what my problem is when I say this hurts me.” Another problem encountered at the GP’s surgery is patient confidentiality – or the lack of. Patient files are stored manually, and doctors often leave patients’ files lying around so that anyone could catch sight of them, Bojan says. Given the taboo and stigma around the disease, this lack of privacy discourages people living with HIV from using public healthcare. Most people living with HIV rely on NGOs to top up their care, particularly when it comes to support services and counselling. When he was first diagnosed, Bojan used a service called Stronger Together, a support network for people living with HIV that grew out of HERA. “[Through Stronger Together] I was speaking with another HIV positive person. And this really helped me a lot, because you know you read things on the internet [about how] you can manage this, it’s not terrible, you will be ok, you will live a nearly normal life with these therapies,” he says. “But I needed someone to tell me in my own language, a personal touch.” “My key message would be: test yourself today because every day of life gives you more time for living, if you start with treatment early. If you are HIV positive, don’t be afraid of it and find people you can speak with yourself. “It did change my life for sure, but I learned to love my life more and to take care of myself now.” Photo: John Spaull/ IPPF EN

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30 November 2017

Photo Gallery: Rising HIV numbers and funding cutbacks - Macedonia at the crossroads

This article was written in September 2017. Since then, thanks to the work of NGOs including our member HERA, Macedonia’s government has committed to providing long-term funding for all HIV programmes for marginalised people. Although HIV prevalence is low in Macedonia, with only 151 people registered as living with HIV, these small numbers mask a complex picture, and one that is rapidly changing. In 2016, there were 40 new HIV diagnoses, the majority of them among men who have sex with men.  Macedonia is not alone in facing a rise in HIV cases. In many parts of Central and Eastern Europe, the rate of new infections is growing. Between 2010 and 2015, the region saw a 50 per cent rise in new HIV infections annually. Another looming problem that threatens to send Macedonian HIV rates spiralling upwards is a funding crisis precipitated by donor cutbacks and political uncertainty. Between 2004 and 2016, Macedonian HIV programmes received almost $25 million from the Global Fund to Fight AIDS, Tuberculosis and Malaria. Much of this money was channelled into HIV prevention, funding NGOs that target those deemed most vulnerable to infection – sex workers, people who inject drugs, men who have sex with men and prisoners. But in 2016 this funding was phased out and NGOs on the frontline are left hoping that the new government will deliver fully on a recent commitment to step in with similar levels of funding in 2018. In the chasm left by the country’s public healthcare system, Macedonia’s sexual health and rights NGOs work tirelessly to plug the gap, often on a shoestring and in an increasingly uncertain funding landscape. HERA, IPPF's member in Macedonia, is a leading NGO providing free HIV testing services, sexual health support and advocacy. It works closely with smaller organisations around the country to ensure support for young people, sex workers, people who inject drugs and men who have sex with men. These NGOs are many people’s first port of call for HIV tests and other vital health care.