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.  

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. Being young and gay in Macedonia is to live in fear of your safety. Like many Balkan countries, Macedonia is notoriously patriarchal and conservative, and homophobia is systemic. “In the Balkans we’re still under this patriarchal system,” says Laki, a 22-year-old bartender. “Masculinity means being muscled, beating your wife, and being the boss.” In this staunchly traditional society, where homophobia is rampant, most LGBTI people live closeted lives.  Stigma towards homosexuality frequently erupts into harassment and abuse. Many young LGBTI people speak of being bullied at school, and facing verbal and physical harassment throughout their lives. “When I go out to a disco they might hit me with a bottle or something,” says 21-year-old Eli (not her real name), a transgender sex worker working in Skopje. “I was attacked, I was mugged, money was taken away from me.” Grigor, a young gay man living in Skopje, says his school provided no information about sexual health and that everyone keeps silent about sexual issues. Attempts to talk to his friends about his sexuality ended in disaster. “They started saying to me, “you’re sick, you have to see a doctor, you’re not normal, you’re abnormal.” He has still not come out to his family. The effect of stigma and harassment, as well as self-stigma, serves to keep many people in the closet. Research shows just 13.6 per cent of LGBT people are open about their sexuality. The knock-on effect is that many young gay men avoid having long-term relationships, Grigor says. “If they were in a long-term relationship, they would have to disclose all sorts of information about partners and everything to their close ones, so they prefer having ‘sex dates’ in order to keep quiet.” These one-off liaisons tend to go hand-in-hand with risky behaviour, making people more vulnerable to contracting HIV. Zoran Jordanov, Director of EGAL, an HIV prevention organisation for LGBTI people and men who have sex with men, says condom use also remains low because people see them as a barrier against pregnancy rather than disease: “When there are two men, they [feel] they don't need to use condoms.” Research data showed that in 2013, just 47 per cent of men interviewed used a condom when they last had sex. Severe anti-LGBTI discrimination also means many men lead double lives. “Most of them have families: they're acting as straight people but at the same time they’re having sex with guys,” says Vojo Ivanov from IPPF member HERA, a sexual health NGO. This, in turn, potentially exposes women to HIV. Rumena Gjerdovska, a social worker at the Clinic for Infectious Diseases at the University Hospital, says most of the HIV positive women they treat have contracted the virus this way.   Stigma and hostility towards LGBTI people keep many away from state services. “The GP would be the last resort because the doctor would say that my sexuality was the cause of my health issues,” says Grigor. “I’ve had people laugh in my face when I’ve asked for help at the state hospital,” says Eli. “The level of discrimination at the state hospital is really high.” Often GPs refuse to register HIV positive patients and surgeons refuse to operate on them: according to HERA, one quarter of people living with HIV have been refused medical services. Fear of exposure and distrust in the judiciary discourages patients from prosecuting, meaning medical staff get away with it and the practice continues. Sex Workers Sex workers are another group who live precarious lives, exposed daily to police harassment and client violence. They are also highly susceptible to HIV and other sexually transmitted infections. Around a third of sex workers use drugs, and some of them have incomplete primary education; some have not attended school at all. There is increasing HIV prevalence, particularly amongst male sex workers. This recent trend warrants urgent action. Among sex workers from the Roma community, the use of contraceptives other than condoms is very low, at just 5.7 per cent. There are 3000-4000 sex workers in Macedonia, working either on the street, behind closed doors or in massage parlours. Like other marginalised groups, many are fearful of using state services due to stigma and discrimination, instead using NGO HIV testing services. People Who Inject Drugs 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. Despite this, the number of people who inject drugs who contracted HIV through contaminated equipment is low, accounting for just one of the 42 new cases in 2014. But in large part this is due to the huge sums of money pumped into harm reduction programmes and needle exchange by the Global Fund since 2004. “Everyone uses clean needles,” says Genghis, a young Roma man and methadone user. “We get them from HOPS” – Healthy Options Project Skopje (HOPS), an NGO supporting people who inject drugs and sex workers.  Silvana Naumova, HOPS programme manager, says things aren’t quite so straightforward. Studies show risky behaviour like sharing needles continues, she says. One study reported that only 70 per cent of drug users used sterile equipment the last time they injected, while only 50 per cent said they used condoms when they last had sex.    The Roma Community For more than eight years, around 8000 women of reproductive age in the largest Roma municipality in Europe, Šuto Orizari (Šutka), a tightknit neighbourhood of around 50,000 people in northern Skopje, did not have a primary healthcare gynaecologist. As of three months ago, the new government have began supplying gynaecological care in the neighbourhood. In Šutka, unemployment and poverty are widespread, and education levels are poor. Against this backdrop of scarce services, the sexual and reproductive health clinic I Want To Know, run by our member HERA, currently provides crucial free support. Although cases of HIV are few and far between here, experts fear that cultural and sexual practices could make Roma people vulnerable to HIV, were the infection to penetrate Šutka. The high prevalence of other sexually transmitted infections (STIs) like chlamydia, gonorrhoea, HPV and Hepatitis C have set alarm bells ringing.   “I’m very afraid that if somehow HIV entered into this community, it would spread very quickly,” says EGAL director Zoran Jordanov. Many Roma people begin having sex young, at around 13 or 14. Strict laws about marriage and girls’ virginity mean that many young people have anal sex. Around 70-80 per cent of Roma men have sex with another man at some point before marriage, Jordanov says. Condoms tend to be perceived as protection against pregnancy rather than disease and so are rarely used, making people highly vulnerable to infection. The Roma also face barriers to public healthcare. “Very frequently the institutions’ conduct towards the Roma population is inappropriate – they discriminate against them,” says Nicolina Nikolovska, a social worker at I Want To Know in Šutka. Many Roma people are turned away from clinics on spurious grounds. Others have a poor grasp of Macedonian or are illiterate, making navigating the health system almost impossible, or might lack the identification documents they need to get health insurance. Additionally, many people have no idea how to exercise their rights to health care and social welfare. Overcoming Barriers Thousands of young people in Skopje are side lined and stigmatised because they don’t adhere to the “social norms” ascribed by society. In Macedonia, a country of just over 2 million people, patriarchy is a pervasive force, influencing family life, education, the media and government. If socially excluded groups are to every have equal access to care in Macedonia, the government must fight to eliminate the factors that allow dangerous taboos, stigma and misinformation to flourish. Improving state health care and introducing sexuality education into the school curriculum is crucial if the country is to progress. Photo: John Spaull/ IPPF EN

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. In an increasingly uncertain funding landscape, Macedonia’s sexual and reproductive health and rights NGOs work tirelessly to plug the gap left by the chasm in the country’s public healthcare system. Whether marginalised because of sexuality, gender identity, occupation or ethnicity, many vulnerable people in Macedonia turn to NGOs for sexual health services, as well as legal advice and support, education, employment guidance, food and clothes. Our member, HERA, 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, LGBTI people and men who have sex with men. These NGOs are many people’s first port of call for HIV tests, and many provide care on an ever-expanding shoestring. “It’s very difficult to go to the state hospital and publicly ask for a test,” says 24-year-old Aleksandar. “I get tested at EGAL [an HIV prevention organisation for LGBTI people and men who have sex with men].” The services are free, discreet and, unlike state services, clients can remain anonymous, while mobile care units make testing more accessible and convenient. “I prefer using HERA’s services because they’re very discreet and they allow privacy, which is very important for me, [and] is why I don’t go to my GP,” says 24-year-old Grigor, who works as a caregiver for elderly people in Macedonia’s capital, Skopje, where he grew up. “My sexual and reproductive health is very important for me,” says 19-year-old Mary, a sex worker who has been working in Skopje for four years. “I use the mobile van that comes to our place of work and I get tested there every three months.” HERA’s mobile clinics also travel beyond Skopje, to rural, more culturally conservative areas, and test around 250 people a month for HIV, with approximately 60 people tested at the outreach clinic for STIs. “[In these areas], the stigma is even bigger,” says Vojo Ivanov, project coordinator at HERA. “Many are very afraid to go to the regular system for check-ups.”   Living with HIV NGOs are vital for those living with HIV. After 23-year-old Bojan discovered he was HIV positive two years ago, he began receiving medical care – as well as psychosocial support – at the Clinic for Infectious Diseases, Macedonia’s only source of antiretroviral therapy for people living with HIV. But for a support network and “personal touch”, he turns to community organisations. Through Stronger Together, a community based organisation for people living with HIV that grew out of HERA, Bojan met other young people living with HIV. “This really helped me a lot because, you know, you read those things on the internet that you can manage this, it’s not terrible, you will be ok, you will live a nearly normal [life] but I needed someone to tell me in [my] language – a personal touch.” Over the last few years, increasing numbers of LGBTI people and men who have sex with men have come to the Clinic for Infectious Diseases, says Rumena Gjerdovska, a social worker at the Clini, and former HERA volunteer. But the clinic still has very few clients from the Roma population, sex workers or people who inject drugs: they are dependent on NGOs to reach these groups – another reason why cutting back NGO HIV programmes would be so devastating.   Expand, Don’t Cut Workers at NGOs speak of an impending crisis in HIV support and care. “If services stopped, we are afraid of a pandemic,” says Silvana Naumova, Programme Manager at Healthy Options Project Skopje, an NGO supporting people who inject drugs and sex workers.  Vojo Ivanov agrees. “If they lose the services that [HERA] is offering it will be a total catastrophe for the community,” he says. “Years of work will be thrown away if these kinds of services stop.” Rather than cutting back services, they need to be expanded to meet current demands and deal with rising HIV numbers among men who have sex with men. A 2013-2014 report by the ministry of health revealed that just 19 per cent of men who have sex with men – the group most affected by HIV – had been tested for HIV in the past 12 months. The situation is similar at the Clinic for Infectious Diseases. “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,” says Rumena Gjerdovska.   What Next? The next few years will be pivotal to the fight against HIV in Macedonia. Unless the government steps up and fully commits to both sustaining and increasing funds for HIV services previously bankrolled by the Global Fund, the future could be catastrophic. Hand-in-hand with hard cash, Macedonia also needs to take a robust look at the role of schools, the media and society at large in suppressing conversations on HIV and enabling dangerous taboos, stigma and misinformation to flourish. The internet has thrown open access to information, which is a double-edged sword. On the one hand it offers access to information cut off by the system, but often means young people get their sexuality education from porn and can leave a lot of issues open to misconception and myths. Zoran Jordanov, Director of EGAL, an HIV prevention organisation for LGBTI people and men who have sex with men, says the government must act now, to save both lives and cash in the long run. “Take care at the right time – that is the policy,” he says. “It’s much easier to prevent than to treat, and much cheaper.” Rumena Gjerdovska agrees. “It’s important to know that we are all sexual beings and [HIV] has nothing to do with our sexual orientation,” she says. “It’s a health condition that if approached early can be put under the control.” Photo: John Spaull/ IPPF EN

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. Young people in Macedonia are some of the worst affected by HIV. Around 0.1 per cent of people aged 15-24 are HIV positive, 14 times more than the general population. A lack of sexuality education, media silence around HIV, taboos about sex and sexuality, staunchly conservative social norms, and discrimination towards LGBTI people play a role in disrupting access to knowledge and services. Many young people leave school knowing almost nothing about HIV or sexual health. “Before I became sexually active I wasn’t very aware of the negative consequences that can result from unprotected sex,” says 24-year-old Grigor, a young gay man living in the country’s capital, Skopje. “There is a complete lack of information in this society in terms of HIV and how it can be transmitted.” Laki, a 21-year-old bartender and volunteer for disability charities, agrees: “There was no available information when I was growing up.” NGOs like our member HERA (Health Education and Research Association), a sexual health organisation, have long been campaigning to get sexuality education onto school syllabuses, but conservative pressure has so far blocked these attempts. The result, says HERA project coordinator Vojo Ivanov, is that “everything young people learn is from the street … from Google.”  HIV is such a taboo that even universities resist mentioning it. “My presentation about HIV prevention was actually cancelled because the professor said it was not appropriate to talk to people about sexually transmitted diseases,” says Miroslav, a 24-year-old student.  Myths, Misinformation and Stigma This silencing of discussions about HIV enables myths to thrive.  “If you’re HIV positive people think you’re going to die,” says Laki. “People think that they're going to die because you’re close to them.” “Older people still think that if you get HIV you will die the same week you acquire it,” says Bojan, a 23-year-old student, living with HIV. “There is 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.” Ignorance and misinformation also affect condom use. “Young people do not believe in condoms,” says Bojan. “They do not believe their effect.” The idea that HIV is a disease of the LGBTI community is also deeply entrenched. “The general opinion is that if you’re homosexual, you’re most likely to be infected … and you’re probably going to transmit it to someone else,” says 24-year-old Grigor. The result is that LGBTI people are even more fearful about being seen accessing sexual health care and so opt to remain under the radar – potentially endangering themselves and their partners’ health, at the same time as making it harder for NGOs to reach them Barriers to Public Healthcare The taboo and stigma surrounding sex and HIV are so strong that many young people say they are fearful of using state health care services. In Macedonia, sexual health clinics simply don’t exist, except for those run by HERA. “Skopje is a small town and I’m afraid if anyone sees me using services, they would think all sorts of things,” Grigor notes. Many complain there is no privacy within the state health care system and that doctors leave patient files lying around or disclose confidential details to others.   Young people then fall back on overstretched NGO services or fork out for private care if they can afford it. Some give up altogether, further endangering their health. Macedonia’s strict laws about HIV testing are another threat to young people’s health and wellbeing. It is illegal in Macedonia for NGOs to provide care to people under 18 without the permission of their parents. “It’s a boundary for us,” says Zoran Jordanov, director of EGAL, an HIV prevention organisation for LGBTI people and men who have sex with men. Unless you begin educating people about sexual health from the moment they are sexually active, habits set in and it is far harder to change behaviour,” he says.’ Sexuality education is taboo in Macedonia meaning young people are often left in the dark when it comes to their bodies, rights and sexuality. Homophobia is also rampant. The effect is for people to keep quiet about their sexuality: the country has the lowest proportion of men who have sex with men who are open about their sexuality, at 13.6 per cent. With unemployment at over 50 per cent, many young people live with their parents, meaning they feel forced to hide their sexuality at home. With the arrival of the internet, young people are looking there for information, which makes reaching them more difficult. Europe currently has the largest youth population in history and holding young people back from accessing the care and information they need is a violation of their human rights. Photo: John Spaull/ IPPF EN

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. Two years ago, when he was just 21 years old, Bojan’s life changed forever. His long-term partner revealed that he had been diagnosed with HIV. Bojan was stunned. “I thought that this only happened in Africa,” he says. At school, at home and in the media, HIV was a taboo subject, off-limits and undiscussed. Growing up, Bojan’s only insight into HIV had been a television advert that framed the disease as being “really scary … a monster”. Bojan also knew that he was highly likely to have contracted the infection. A month later, his fears were confirmed. Rising HIV Numbers HIV prevalence is low in Macedonia, a small Balkan country of just over 2 million people. Between the first case in 1987 and late 2014 there were just 315 registered cases. Today, there are 151 people registered as living with HIV – a tiny figure when you compare it to a country like Latvia, which has a similarly sized population but in 2016 had 6,607 cases registered. But these small numbers mask a complex picture, and one that is rapidly changing. In 2016, there were 40 new HIV diagnoses in Macedonia. Thirty of these were among men who have sex with men. HIV prevalence among men who have sex with men is at 1.9 per cent, a staggering 271 times higher than among the population at large. Other marginalised groups like sex workers and people who inject drugs are also at high risk. And in certain ethnic communities like the Roma, who make up 2.6 per cent of Macedonia’s population, cultural and sexual practices make people particularly vulnerable to HIV and STIs. 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. Funding Crisis 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 targeting those deemed most vulnerable to infection – sex workers, people who inject drugs, men who have sex with men and prisoners. These investments meant Macedonia vastly expanded its HIV prevention services, pouring funds into civil society organisations on the front line of care. But in 2016 the Global Fund phased out funding for Macedonia: the country’s low HIV prevalence and elevation to ‘upper-middle income country’ status meant it was no longer eligible. Without vital support from the Global Fund, many NGOs working to plug the gap will run out of funding at the end of this year. Our member, HERA, is on the frontline providing essential care to those who need it most. In September this year, the new government, sworn in in June 2017, announced it would keep funding HIV services and prevention programmes for 2018, earmarking around $1 million for civil society organisations (CSOs) propping up HIV prevention – roughly the same amount the Global Fund had pledged to CSOs annually. But fears remain. Although 13 NGOs have signed a contract on HIV care delivery with the government, some are yet to receive money or confirmation that funds will arrive. Even if the government does uphold its promises, the rise in HIV among men who have sex with men in Macedonia calls for an increase in funding rather than pegging funds at previous levels, in order to improve services. Although HIV levels are not high in Macedonia, the majority of vulnerable groups rely on NGOs to provide care.  The Global Fund cuts have meant that NGO futures are even more uncertain, which simply put, leaves hundreds of people high and dry, putting their health and safety at risk. Photo: John Spaull/ IPPF EN

Across the city at Poraka's Day Centre for adults, the light-filled central room, with its open- plan kitchen and large work tables, is a hive of activity. The Centre aims to help users to be more independent in their daily lives. Each morning, half the group visits the shops and supermarket just below the Centre, to buy food for the day’s meals. The other half is in charge of the cooking. Other activities at the Centre include art, music, and – since 2010 – sexuality education. One of the most engaged participants in the group sessions is Lara, 27, who has behavioural problems and learning disabilities. She is full of energy, bustling round the Centre’s kitchen and taking a leading role in the cooking. Every day she travels alone on the bus. It's an important mark of independence – but one that means she must know how to keep herself safe. She has been coming to Poraka for five years. “I love to come here, because I spend my time working a lot,” Lara says. “I like that I’m active all the time. Working in the kitchen is my favourite part – when we prepare lunch, chopping the vegetables. I also enjoy the art classes.” What does she feel about the sexuality education sessions? “I feel good about them and I find them useful,” she says. “If someone wants to force us, we can push them to protect ourselves, to defend ourselves. And there are some things that you can do at home only, when you’re alone, but not in public places.” “We learn about sad and happy faces, and about family. We learn about sexual relations and body parts. Boyfriends and girlfriends are when they love each other. When they hang around together: when they kiss. They sit on each other’s laps. Friends don’t do that.” Lara says she had a boyfriend once, and would like one again – if she can find one. “I need to behave appropriately, not be aggressive with him, and use a condom,” she says. *** People with learning disabilities (PWLD) face high levels of stigma in Macedonia. In 2009, H.E.R.A was one of four Member Associations offered funding by the IPPF European Network to develop knowledge on working with PWLD. Related content:  Keep Me Safe Keep me safe manuals International Youth Day 2014 - working with young people with learning disabilities in Cyprus

In Macedonia, HERA's special educator, Zaklina Stepanoska, recalls the reactions of parents when she explained the programme. They were running an inititiave for young people with disabilities to learn about their sexual health. “There were parents who cried when I told them about this,” she says. “I asked them why and they told me it was because they had thought their children, who were in their mid 20s, would never fall in love or have girlfriends. It touched them very much and surprised them that somebody had thought about their children receiving this education and maybe having a relationship.” The programme has already been useful in changing behaviour in the centre. “In the spring and summer, when we're outside in the garden a lot, the girls will go crazy when some guy walks past, because they like boys,” Zaklina explains. “They will shout and talk to them even though they don't know them. So we make them understand that they can say 'hi' to people they already know, but not strangers, unless we allow them to. “We also had a big problem with boys masturbating. Since the sessions on public and private space we don't have this problem any more. When a staff member sees that someone is going to start doing it, they ask them to go to the toilet, or they take them to a private space. They don't say 'stop', because if they're stopped they can become aggressive. Back then they didn't know how to deal with this. Now they tell them it's not suitable to do in public. And the boys hardly ever try to do it any more. “We had a problem, too, with girls not knowing how to put sanitary towels in. Their parents would put a towel in at home and the girl would forget about it. Now they bring towels themselves and they know how to change them. “The young people are very interested in the programme. It's something new. They're very interested in the fact that can become independent outside the centre, that they can go out alone, that they can be with someone, with a boyfriend or girlfriend, and that they are allowed to do that. Because their parents usually scorn them when they started talking about these things. “There are changes in the way they behave. They don't talk to strangers any more. They know the appropriate words for parts of the body, and they're not embarrassed to say them out loud any more. In the beginning when we had individual sessions the girls would start crying and saying 'this is shameful'. They would not even utter the words. Now they're free to talk about it. They have become closer to us. They would come to us and say if they have a crush on somebody. They laugh about it, they tease each other. They're much more relaxed than they used to be. “There are two users here who act as boyfriend and girlfriend in the centre. They live far apart but here they watch films together, they dance, they kiss. They can't be separated! It's a positive thing; they are happier.”