Turkish villagers shun boy with HIV

After their two-year-old son became infected through a blood transfusion, an impoverished family has been forced to live in seclusion.

ISTANBUL // Little Yusuf has had more than his share of pain in his short life. After an accident in his parents' home in south-eastern Turkey, the boy, who is three years old today, was infected with HIV during a blood transfusion. He has to take a cocktail of five different drugs every day and travel to the capital, Ankara, for treatment every three months. In his home village, people shun all contact with him for fear of catching Aids. Other children refuse to play with Yusuf, and his family had to move to a mud-brick house at the edge of the village.

"It is no longer like it used to be," Mehmet Coban, Yusuf's father, said in a telephone interview last week. "Neighbours used to come around to our house for tea. They don't come that often anymore." Yusuf contracted HIV last year. After suffering serious scalding when a pot of boiling water fell on him in Ulucanlar, near the city of Sanliurfa in Turkey's impoverished south-eastern region, the boy was admitted to a hospital in Sanliurfa, where he received a blood transfusion. Later, tests revealed that the blood was infected with HIV.

For Yusuf and his family, everything turned upside down. Mr Coban, who had frequently spent long periods away from home earning money as a construction worker in Istanbul, Izmir and other Turkish cities, had to give up his job because he had to take his son to treatments - first for the scalding and then for HIV - while his wife looked after Yusuf's six siblings. After an intervention by the Turkish health ministry, Mr Coban could start a new job as a cleaner at a local health clinic, where he is still employed today.

Meanwhile, the Coban family became increasingly isolated in their village. Although the whole village population belongs to the same Kurdish clan, people there were so afraid of catching Aids that the Coban family had to move house, Mr Coban said. "Pressure became so great about nine months ago that I built a mud-brick house at the edge of the village and took the family there," he said. "Other children used to play with my children. But they no longer play with them. People know nothing [about HIV/Aids]; all they know is that it is a contagious disease."

What the Cobans experienced in their village is not uncommon for the 3,671 people in Turkey who have officially been registered as HIV-positive since the country reported its first case in 1985, said Tekin Tutar of the Positive Living Association, a non-governmental group based in Istanbul that helps people with HIV. Discrimination against HIV-positive people, whose real number may be much higher than the official figure suggests, is widespread in Turkey and can even be found in the medical sector, Mr Tutar said yesterday. The reasons for that behaviour are the same as similar problems in other countries, he added: "There is a lack of information, and there are prejudices."

There has never been a massive campaign to educate the public in Turkey about HIV/Aids, Mr Tutar said. "For years, the media put out stories that created fear." Today, the situation is better than in the 1980s, "but we still have problems", he said. "Society as a whole is less afraid than it used to be, but there is still fear. People still think that being HIV positive is like receiving a death sentence."

Muge Cevik, a specialist on HIV/Aids, told the NTV news channel that there have been some cases where hospitals in Turkey refused to accept HIV-positive patients, even though their ailments had nothing to do with the virus. She said it was important to stress the same basic messages over and over again: "HIV does not spread when you sleep in the same bed with someone who is HIV-positive, kiss him, talk to him, use the same toilet, bathroom or swimming pool, or eat from the same table and use the same fork or knife."

Mr Tutar said there are enough drugs for antiretroviral HIV treatment available in Turkey and that patients like Yusuf do not have to pay for those drugs. But patients face the problem that Turkey has only a few specialised centres for HIV/Aids treatment, he said. That is why Mr Coban and Yusuf have to travel to Ankara every three months from Sanliurfa, a trip of roughly 800km that takes them more than 12 hours on the bus.

Mr Coban said he was concerned about what kind of future awaits his son. "I don't know what will be," he said. "Maybe he cannot even join the army" for military service, a requirement for every young man in Turkey. "He will have to take five different drugs every day for the rest of his life." Authorities never apologised for the infected blood transfusion, Mr Coban said. "No one ever came and asked us how we were doing."

He said he had launched a lawsuit against health authorities. In an earlier case of a patient being infected with HIV during a blood transfusion in another hospital in Sanliurfa, the family of the victim sued the health ministry and received 110,000 lira (Dh270,000) in compensation, according to press reports. Mr Tutar said infections via blood transfusions were rare in Turkey today because procedures to test donated blood have improved.