Carrying HIV and Aids in Romania is a task made all the more difficult in the face of widespread ignorance and hostility from the country’s non-carriers, as Daniela Tuchel finds out.
"When I was diagnosed with HIV, I fell into a depression so severe it almost cost me my life. I was in deep shock, I couldn’t believe this was happening to me. I thought of suicide and I refused counselling. But somehow, I pulled myself together thanks to the support of my family".
Mihai, not his real name, is one of the thousands of teenagers who are living with Human Immunodeficiency Virus in the Romanian capital, Bucharest.
Diagnosed five years ago, Mihai’s life has since been a long list of "sufferings and frustrations".
"At first, I sought comfort with my best friends, besides my family. When they learnt I had HIV, they began avoiding me under different pretexts. Eventually, we grew apart and my only true friend now is my dog. I don’t want people to know my real identity, I have suffered too much after I lost my closest friends," he says.
Mihai recalls how it all started, with an ordinary toothache. He got infected after he went to see a dentist. Mihai was only 11 at the time.
To Mihai, the physical symptoms of the disease are not so important as the "battle" that has been in his "heart and mind".
"No one can imagine what was going through my mind when I saw other children playing and I couldn’t do the same because they just wouldn’t have me among them. What was I punished for?" he asks.
Aurora Liiceanu, a top Romanian psychologist, blames it on "lack of tolerance".
"We can’t live with things deemed to be ‘unusual’", she says.
"Romanians in general think people with HIV and Aids should stay in hospitals and not mix with the healthy. They also believe it is the duty of the state alone to take care of the infected. Thus, the rejection of those affected by the virus", says Liiceanu.
To help alleviate social exclusion of the HIV affected, some Romanian NGOs have launched projects to educate organisations and individuals about issues related to the virus.
One such project is SEYPA (Social Exclusion Young People Aids).
SEYPA was launched earlier this year and focuses on five European countries with a high incidence of HIV: Romania, Russia, Italy, Spain and Portugal.
"The project has been conducting fieldwork with the help of children and adolescents living with HIV and Aids in order to identify gaps in policies and services and produce tools and action programmes that reduce exclusion", says Mugur Badarau, SEYPA project co-ordinator of the Romanian Angel Appeal.
RAA has set up many HIV-related projects in the past 12 years.
Badaru says most Romanians are not familiar with the ways HIV is transmitted; some are even ill-informed and avoid direct contact with seropositive persons while denying their right to education, work, and medical assistance.
In its latest report on HIV and Aids, the World Bank notes an "alarming increase" in infection rates in South-eastern Europe, with 13,000 cases in Romania alone in 2003.
The study says that although Africa has more infected people, South-eastern Europe could be "the site of the world’s next Aids crisis".
"Our own figures are not exact. I am sure that testing done at a national level in Romania would reveal a grimmer reality", says Claudia Catana, information officer for the RAA.
"The figures are much higher and many people are unknowingly spreading the disease. By law, HIV testing is compulsory only in maternity wards. And we should not forget that the vast majority of the sick people in Romania are teenagers or adults who are sexually active," Catana warns.
Catana says most of these people were infected in hospitals before 1989, but the communists destroyed the evidence while they were still in power, so it is now impossible to keep track of the HIV ill. "Most of the people who got infected at that time don’t know it, even to this day."
Mihai learnt he got HIV almost a year after he got infected. "I wasn’t feeling very well, it’s true, but the last thing on my parents’ mind was to make me take a HIV test. It took a long time and many weeks spent on hospital beds until a doctor thought I should take some thorough blood tests".
Refusal of medical care
One of the main problems Romanian people living with HIV and Aids face is the denial of medical care.
Mihai says he often needs to see dentists and dermatologists. "I always tell the doctor that I am HIV positive. I know he should use protection when he sees a patient anyway and I have always felt it is my duty to inform him".
However, this openness has brought mental agony to Mihai more than once.
"There are doctors who ask you politely to leave when they hear you have got HIV. They refuse to see you although you are sick. I guess they are too terrified they might catch the disease".
Mihai adds that such an attitude does nothing but deeply hurt the patient. "It seems like it is not enough that you feel like you are a burden for the near and dear ones most of the time. You are rejected by the people who are supposed to help you, too".
"The general trend is to refuse health care for those infected. Many doctors, except maybe in ER, just won’t see the HIV positive", Claudia Catana adds.
Doctors justify their refusal saying they do not have enough protective gear.
However, Catana says most of the time people are refused treatment because of "a mental barrier created by inadequate information on HIV."
Care for infected children
In order to help HIV infected children, RAA has set up a network of 80 medical practitioners.
It was not, however, easy convincing the doctors to start with. If in the beginning, the doctors would see the sick only in the spaces provided by RAA, many of them now take care of seropositive patients in their own offices.
Ioana Baciu is one of the dentists who have been seeing children with HIV for the past two years.
"After such an experience, you definitely change, you become a different person… more humble in front of your destiny, but more fierce against human ignorance", she says.
At 17, Sorina knows very well what "human ignorance" means as she faces up to hardships teenagers of her age wouldn’t normally, after she found out that her mother was HIV positive.
"Few people understand the serious social consequences HIV and Aids have on their lives. Unfortunately, you come to realise what this tragedy is all about only when someone very dear to you falls sick all of a sudden", Sorina says. "We must learn more about the virus and, for this we need the media, the teachers and the doctors".
Humiliation at school
Another form of social ostracism is the humiliation HIV-afflicted kids face at school.
Often children have been thrown out of kindergarten or school after teachers discover the kids are HIV infected. At other times when they are allowed to study at a particular school, they face humiliation both from teachers and schoolmates.
In September the headmaster of a secondary school in Iasi in northern Romania, asked a boy to leave the classroom after she learnt he was HIV infected.
The headmaster told the boy’s mother that the boy was "a dirty thing to the school" and declared the school out of bounds for him.
Mihai says his colleagues at school know him only as a boy who gets sick more often than the others, "but that’s all", they have no idea he has HIV. "If they knew, it would be a tragedy for me. No one will probably treat me normally again".
He says it is easy for him to hide he is infected because he lives in a big city. "People with HIV who live in rural areas for example, are more vulnerable. Everyone knows everyone else there and the chance of keeping their secret is remote".
However, not being able to relate his agony to people around him has proven to be an ordeal for Mihai.
"You long for someone your age to talk about your disease with, to bring your fears into the light. There is no one there for me".
On the same day of the Iasi incident, two other infected children were thrown out of school in a village in Vrancea county in eastern Romania because of pressure from parents of other kids.
Andreea, 10, says she did not have anything against the infected kids.
"When the new school year started, I was happy to see we had new colleagues. But my parents told me not to touch them or talk to them, or I might get sick too", she told Romanian media.
Maria, a Romanian girl of 15, has been living with HIV for several years now. "When talking about the virus, people say all sorts of nonsense… I can’t even take part in any discussion with my friends. I hate it and it makes me feel very sad," Maria complains.
These children experience what psychologist Liiceanu calls "a secondary psychological trauma".
"Besides the fact that the disease brings along not only physical, but also mental suffering, the hostility of the community leads to deeper negative feelings in patients. The infected kids see no helping hand, what they experience from the people around them is only rejection", Liiceanu says.
The Aids law
Now, parents of HIV-infected children are beginning to move national or international human rights organisations for justice.
Romania did not have a law to protect those afflicted with HIV and Aids until less than a year ago.
In November 2002, as a result of a continuous international pressure and criticism from human rights organisations abroad, Parliament enacted a law.
The law seeks to protect people living with HIV/Aids from social exclusion and guarantees their right to health care, to attend schools and to work.
The law also lays down that whoever knowingly spreads the disease can be convicted.
In September, doctors at a hospital in Iasi discovered that a young man had donated infected blood. The man was surprised to find out he was HIV infected and was sent to the Infectious Diseases Hospital for a thorough blood examination.
"This case is not singular", says Liana Velica, representative of the Anti-Aids Romanian Association (ARAS).
"The ideal situation would be for people to willingly undergo tests for HIV instead of donating infected blood and then discovering they are ill", Velica says.
Like other Romanian organisations, ARAS is attempting to combat the information deficit on the virus and has launched various programmes to help counsel those affected by HIV/Aids.
Mihai believes most know too little about the virus because even getting to read or listen to others talk about it makes them uncomfortable.
"In their minds, HIV is associated with a feeling that their life is somehow threatened".
"On the other hand, I have heard people saying that HIV is the result of promiscuity or drug use. And they are convinced that since the victims are those who have led such a way of life, there is no possibility that they would get infected. So why bother getting informed about Aids?"
Mihai thinks there are many diseases with a stigma attached to them, but the one that goes with HIV is the strongest. "This is simply because of an overwhelming fear of infection", he says.
The Vrancea case, where two children were expelled from school, is an illustrative case.
Over 130 residents of the village signed a petition and then took to violence after they found out the authorities were setting up a home for children infected with HIV and Aids.
Most of the villagers opposed the EU-financed project because they were convinced the disease would spread.
Many of the protesters believed Aids could indeed spread through water or mosquitoes or by simply touching livestock or objects touched by a carrier.
"I am not surprised this has happened", Catana says.
"Their reaction was only natural, considering that they didn’t know a thing about the disease. Those in charge of the project should have educated the villagers first and then built the home for the infected kids".
As for careless remarks and unfair treatment, Mihai says this behaviour still upsets him, although he has now been ill for so many years.
"When it comes from people least expected, this makes it doubly hurtful," he says.
In fact, Mihai finds more comfort in the company of his pet dog. "My mother bought me a puppy on my birthday. This was the best gift I have ever got. My dog gives me total, unconditional love. He is always on my side and I can tell him anything, without the fear of being judged."
However, Mihai says his dog cannot always help him forget his condition better than a human friend could have.
"I take over 20 types of medicine but sometimes it doesn’t work. When this happens, putting together those two words – Aids and HIV, just seems ridiculous".
Editor’s note: HIV is the virus which causes the fatal disease of the immune system, Aids.
At least 28 million people worldwide have died from Aids – their bodies’ defence systems ravaged by the HIV virus to the point where everyday infections become life-threatening.
More than 20 years since HIV was first recognised, there remains no vaccine against HIV and no cure for Aids, although a new generation of drugs has dramatically extended the life expectancy of those who contract HIV.