HIV patients face stereotypes

COPING with an incurable virus is only one of the problems confronting HIV positive people living in Slovakia, as discrimination remains rampant amid an increase in cases and a drop in funding.

There were around 80 confirmed HIV infections in 2013, as compared to just 50 in 2012 and 25 in 2010. However, the real number is actually three or four times higher, according to Danica Staneková, the head of National Referential Centre for HIV/AIDS Prevention of the Slovak Medical University in Bratislava (SMU), who spoke to the Sme daily in mid-January. While cases have increased, the number of HIV tests performed is falling with more than 190,000 tests conducted in 2010 as compared with 183,000 in 2012.

Since 1985 there have been 489 HIV infections registered in Slovakia until September 2013. In 72 cases the infection progressed to AIDS and 41 of those infected by HIV have died, Sme reported. Around 45 percent of 489 people suffering from HIV live in the Bratislava region, 63 percent of them are men having sexual intercourse with other men, and 127 people are foreigners, Staneková told The Slovak Spectator.

Despite widespread negative stereotypes of people who are HIV positive, life with HIV is not much different from ordinary life, said Peter, a 30-year-old man who spoke with The Slovak Spectator, but requested his full name not be used to avoid discrimination. Peter lives in Bratislava and has had HIV for more than two years. The biggest change in recent years, however, is how he is treated by doctors.

“Try to visit a doctor and tell him you are HIV positive,” Peter said. “If you do not tell them you will have a problem. But when you do tell them you will have probably an even bigger one. So you can choose.”

Fearing the truth

HIV prevention trends are moving the wrong way and society is not properly informed, Jozef Gnida, the head of civil association HIV Pomoc (HIV help), told The Slovak Spectator. Knowledge is growing very slowly, even as infections increase, he said.

One reason is that budget cuts have seen the number of places offering free, anonymous testing for HIV infection reduced, Staneková told The Slovak Spectator.

“The interest of people in testing may decrease also because they are not aware of infection risks,” Staneková said, “or because HIV infection has become treatable but not curable.”

The problem is that HIV symptoms can be very subtle or even non-existent initially, Peter said.
Moreover, some people are so afraid to know about their HIV status that they refuse to be tested. They underestimate the disease, thinking it is problem of a small community of people, but those several hundred officially confirmed as HIV positive is just the tip of the iceberg, Peter said.
After learning that he is HIV positive, Peter cried for approximately five minutes, he said. The doctor told him it is incurable, but since they found it at an early stage, he will not die soon. This gave him hope, he said, and Peter now jokes that he is more likely to die in a car crash than from HIV.

“A person with HIV may live probably longer than a person who is not checked so often,” Peter said. “I am tested for everything. You undergo a preventive examination once every two years. I undergo a preventive examination every third month.”

Doctors keep quiet

While specialists are open and helpful, doctors not specialised in treating HIV patients are less so. Peter said that he has approached around 1,000 doctors and most told him they cannot treat him since they are not able to take all the necessary measures to prevent the spread of the disease. If people with HIV find a doctor willing to treat them, it is a big success, he said.

“If I find such a doctor he or she asks me to not tell others,” Peter said. “They do not want to have other patients [with HIV]. It is kind of selfish because I have a doctor and others do not.”

However, every doctor should approach each patient as someone who can spread a disease, Staneková said. It means they have to take all the necessary steps to prevent the spread of HIV without knowing whether that person is suffering from this disease or not. Peter added that the behaviour of doctors simply reflects the ignorance of society in general.

It is almost impossible to find a dentist, Peter said, explaining he spoke with 70 of them until he finally found one willing to accept him as a patient. Some people therefore lie to their dentists, saying they have hepatitis and not HIV, so that the dentists treat them with special caution but do not refuse them.

“It may seem like a [bad] dream but this is the reality,” Peter said. “The reality of all HIV positive people.”

The fear of HIV and AIDS is exaggerated in Slovakia, Peter Stanko, head of the Department of Stomatology and Maxillofacial Surgery of Faculty of Medicine of Comenius University, told Sme. He is one of the few who is willing to treat HIV-positive patients, he said.

“It is a suffering person who should be helped,” Stanko said. “It is also a matter of belief and good will.”

Such patients have to be treated at the end of opening hours so no one comes after them. Both the doctor and the nurse are fully clothed and Stanko even wears a dental face shield to protect himself in case the patient coughs. There is a higher risk when a dentist drills a tooth or makes a removable tooth prosthetic, since the infection can spread via dental imprints, he said. Stanko said he understands his colleagues’ reluctance to treat patients with HIV, pointing to the profit-based health-care system. To deal with this situation Stanko as well as Ján Gašič, the head of the Slovak Chamber of Dentists, are proposing to create specialised centres for treatment of such patients, Sme reported.

Experiencing discrimination

Health care is not the only sector where people living with HIV experience discrimination. Many think that people with HIV are drug addicts, sexually promiscuous or live at the bottom of society, Peter said.

Peter has a partner who knows about his disease, but was interested in other people’s reactions, so he wrote on a popular Slovak social network that he is HIV positive and looking for a partner.

“When you write to an internet discussion that an HIV boy is looking for someone, others will reply that you are garbage and further offend such a person,” Peter said. “Those discussions lead to [the opinion] that those people should be jailed and isolated.”

Even civil associations that work with HIV-positive people experience such prejudices, according to Gnida. Some printers are afraid to print materials for his association since they do not want to be connected to the HIV or AIDS acronyms.

“It is caused by poor knowledge [about HIV]; some people are afraid of being infected even by printing materials for us,” Gnida said. “Some of them hang up the phone immediately after we introduce ourselves.”

Since people with HIV are seen as immoral or aberrant, they are afraid to speak to their relatives and friends about their health condition or related problems, Staneková said. This leads to a society that concludes “HIV infection does not concern us”.

“HIV-positive patients are afraid of healthy society, and society is afraid of them, instead of being afraid of the disease itself.” Staneková said. This “vicious circle” needs to be broken, she concluded.