By Jelena Kalinić
“I found out that I am HIV+ by chance after donating blood voluntarily,” says Edo Edic*, a Bosnian man. “Three months after that, I received a call from a doctor who told me that I should come to the clinic to have a blood test done. When the results arrived, I found out that the virus was present at the time of blood collection. It taught me a lot, however paradoxical it may sound. It taught me how to be responsible towards myself and towards others, and how to be vigilant. It changed my partner relationships because at some point I think you have to admit the truth to your partner, it used to happen that some friends [chose to no longer be friends with me], but I see it as a kind of filter.”
A report from November of last year by the World Health Organization for Europe (WHO) and the European Centre for Disease Prevention and Control (ECDC) reveals that the number of people living with undiagnosed HIV in Europe is increasing..
“Widespread HIV stigma is dissuading people from getting tested and is dangerously derailing us from meeting our 2030 goal of ending AIDS,” said Hans Kluge, WHO Regional Director for Europe.
Low-risk is not the same as no-risk
Bosnia and Herzegovina is perceived as a low-risk country for HIV/AIDS. And indeed, here, as in neighbouring countries, the incidence and prevalence of cases of HIV are much lower than in many other parts of the world. However, citizens perceive this as meaning they are risk-free. Combined with stigmatisation, this is a potentially dangerous situation.
An increase in persons living with HIV has been recorded in Bosnia and Herzegovina in the last few years. In 2022 alone, there were 59 new cases; of them, 16 progressed into AIDS. Adding to this, 5 deaths linked to HIV/AIDS have been recorded, according to Damir Laličić, Director of the civil society organisation Partnership for Health,. This CSO organises ongoing workshops on HIV/AIDS for medical and non-medical staff.
Every first December, for World AIDS Day, a tent is set up on the square in the capital of Bosnia and Herzegovina where people can test for Hepatitis C and HIV free of charge. However, many people are hesitant to go due to feelings of shame or because they consider themselves to not be at risk. The fear that an acquaintance or a relative will see them in such a public place and start gossiping or spreading rumours is stronger than the desire to get tested. There is also the fear of receiving a positive test outcome. And thirdly – HIV/AIDS is still falsely perceived as a disease exclusively affecting gay men, drug users, and sex workers. This implies that someone who does not belong to these categories cannot possibly test positive. People who suspect they may have been exposed to the virus, often sign up for a voluntary blood donation. This way their blood will be screened, and they will not have to test publicly.
Homophobia is often at the core of the stigmatisation of people living with HIV/AIDS.
“The way that HIV stigma – and homophobia -are perpetuated is well intertwined, it is impossible to separate them out,” says Matthew Hodson, Executive Director of NAM, an UK-based charity dedicated to sharing credible information about HIV/AIDS. Hodson is openly gay and HIV+ and has lived experience and insight on this topic.
“This strengthens the stigmatisation of people living with HIV. In the UK, where anyone can get HIV, two communities are particularly stigmatised: gay/bisexual men, and the African community,” he adds.
But, stigmatisation affects communities differently. “Stigmatisation actually creates much greater barriers to testing in the African population than in the gay population,” he explains.
Another issue in Bosnia and Herzegovina is that HIV is still perceived to be a death sentence: people think that living with HIV means they cannot have a normal life, even medication. More work needs to be done to highlight that when the virus is under control with treatment therapies, people living with HIV can have normal, happy and healthy lives. It is critical to convey the message that if HIV is undetectable through treatment, it is also untransmittable.
“My day looks like that of any healthy person, with the exception that I take therapy before going to bed. Somehow I don’t see it as a problem anymore,” says Edic.
“U equals U fits in any element of discussion about HIV, because it challenges the stigma [and] it encourages HIV testing. I think it holds the key to ending the epidemic and it is liberating and empowering people who live with HIV,” explains Hodson.
The fight against HIV/AIDS in Bosnia Herzegovina leaves much to be desired
In order for the virus to be undetectable and untransmittable, persons living with HIV must take prescribed treatment therapies. However, in Bosnia and Herzegovina, shortages of these life-saving drugs have been reported.
“Unfortunately, we all live with this risk every day. In 2022, [a medical centre allegedly] ran out of medicines because both the entity that procured them and the state decided they had to cut costs. That problem was solved 2 months later after we all put pressure on the institutions and mobilised many organisations. With that move, the state de facto sentenced us to death. I doubt this will be the only time this problem occurs,” says Edic.
“Access to treatment is fundamental, it is an opportunity to end the HIV/AIDS pandemic. Because when you have access to treatment, when you have safe, guaranteed access to treatment and can be treated, then the virus is suppressed and you can live normally,” Hodson emphasises.
Living with HIV is compounded by many other challenges
People living with HIV also face discrimination when seeking employment, which can make them economically dependent on others, furthering an already challenging circumstance. Concealing the diagnosis is also not an ideal solution because the employer might question medical-related absences from work.
“I am currently employed,” says Edic. “It is much easier for people today to find a job. However, being a person living with HIV and working can be very difficult. If there are health complications, addressing them can be expensive. It is difficult to give a credible reason to the employer as to why you are so frequently absent from work“
I asked Edic what he is most afraid of. He pauses, “that one day I will be prevented from going out or that someone will not want to serve me in a cafe if they find out that I am a person living with HIV.”
* Edo Edic is a pseudonym given to respect the privacy of the source