Despised and ignored – living with HIV in Albania

She neither looks nor sounds like a fighter, but her words reveal some steel. "Kindergartens refuse to accept my twins, I'm not allowed to work in the municipality because the director considers me dangerous, the nurses push the door open with their feet when they treat my children, my relatives have stopped visiting me, but I'm here and I won't give up," says Zana.

"This is a terrible battle but I have chosen to fight it, because I believe in life."

Until 2001, Zana (a pseudonym) was a happy mother of three boys and a girl. But then her husband died - of AIDS, it later transpired. Tests showed that, except for her daughter, everyone else in the family also had the infection.

Zana's is in many respects an experience typical of Albanians with HIV. In hospital, HIV patients frequently feel despised by the staff. At home, some find themselves rejected, even ejected. At work, they face discrimination. In social life, they encounter widespread ignorance. Some even prefer to go without treatment for fear their condition might be disclosed.

"Rather than trying to reduce the harm, we add to it," Zana says of Albanian society.

Some new efforts are being made - the country's first unit dedicated to HIV/AIDS patients is being set up - but experts believe stronger measures are needed if Albania is to prevent a dramatic upswing in infection rates.

To date, Albania has been relatively insulated from the disease. Its extreme isolation in the communist period ensured the virus arrived late, and conservative sexual morals then slowed its spread. As a result, the profile of sufferers differs from the post-Communist norm: over 90% of infections come from sexual contact rather than from injecting drugs, and most of those infected are aged between 30 and 40.

At 0.1% of the population, the infection rate is well below the 1% seen as the threshold at which the disease spreads rapidly into the broader population.

The fear is, though, that Albania is becoming a more typical country and that infection rates will rise fast.

Since 1993, 172 HIV sufferers have officially been identified. Specialists estimate the true number as 400-700.

A worst-case scenario suggests Albania may have 10-15,000 cases by 2015. Officials acknowledge that possibility, but predict 7,000 cases by 2015.

Better estimates may be possible when a national study currently under way is completed. Already, though, "initial results... have revealed some interesting but disturbing facts", says Arjan Harxhi, a member of the research team.

"Among them, the most worrying is the evidence of in-country HIV transmission," he says.

Most HIV-positive Albanians contracted the disease while visiting or working in Western Europe, but the rising proportion of women infected suggests HIV is now spreading into the wider population.

The study highlights a number of groups at particular risk. Among men who have sex with men, the infection rate runs at 3%, and harsh discrimination increases the chances of transmission to the broader population. Another group particularly at risk are Roma, among whom the incidence rate runs at 0.5%. Though isolated in Albanian society, they, too, could perhaps prove a bridge population.

A fall in the age at which people start their sex life and the rising number of sex workers suggest that some cultural barriers that have helped Albania may now be falling.

The greatest concern, though, is that Albania will follow other post-Communist countries and see a rapid spread among injecting drug users.

"There are all the factors in place that could cause an explosion of the epidemic," Harxhi warns. "It is time to intervene energetically."

Santino Severoni, head of the WHO office in Tirana, thinks that the problem's multidimensional nature calls for a well-co-ordinated national program - and, so far, Albania's efforts have been sporadic.

One area of particular public interest came into focus in early October, when it was revealed that four children who suffer from thalassemia - an inherited form of anaemia - had been infected through blood transfusions. Zana suspects her husband contracted the infection through a blood transfusion, or that she may have caught it during an abortion.

Such cases are rare, but they highlight the number of fronts on which action is needed.

• Valbona Sulce is a journalist based in Tirana. A longer version of this appears at Transitions Online (www.tol.org).

Article takes a look at the HIV/AIDS problem in Albania. Article is part of a European Voice Special Report: 'HIV/AIDS'

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