Young People and HIV: Overlooked, Ill-Informed and Vulnerable

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