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