"When I was diagnosed with HIV, I fell into a depression so severe, that it almost cost my life. I was in deep shock; I couldn't believe this was happening to me. I thought of suicide and I completely refused professional counselling. It took me months to manage, somehow, to pull myself together, only thanks to my family's support through this ordeal".
Mihai, not his real name, is one of the thousands teenagers who are living with HIV in Bucharest. He says that he was diagnosed five years ago and, since then, his life has been a long list of "sufferings and frustrations".
"At first, I sought comfort with my best friends, besides my family of course. When they learnt I got HIV, they all started 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".
Mihai says that it all started with an ordinary toothache. He got infected after he went to see a dentist. Mihai was only 11 at the time and, since then, his life has changed completely. To Mihai, the physical symptoms of the disease are not as 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?"
Aurora Liiceanu, one of the best Romanian psychologists, who has been seeing similar cases for many years, explains this attitude by ‘a lack of education of tolerance’. "We can't live with the things that are unusual", she says. "The Romanians in general think that the people with HIV/AIDS should stay in hospitals and not mix among the healthy. They also believe that it is the duty only of the state to take care of the infected. Thus, the rejection of those affected by the virus", Liiceanu says.
In order to reduce the social exclusion of the infected people, some Romanian NGOs have started various projects which aim to educate organizations and individuals about relevant issues related to HIV/AIDS and also to prevent the spread of this epidemic.
Such a project is SEYPA (Social Exclusion Young People AIDS), which began last year and focuses on five European countries with high prevalence of HIV: Romania, Russia, Italy, Spain and Portugal. "The project has been conducting fieldwork with the help of children/adolescents living with HIV/AIDS in order to identify gaps in policies and services and produce tools and action programmes that reduce exclusion", Mugur Badarau, SEYPA project coordinator - Romanian Angel Appeal, told IWPR.
He says that most Romanians are not familiar with the ways HIV is transmitted, or even misinformed, and thus avoid direct contact with positive persons and, in some cases, even by breaching these people’s right to education, work, medical assistance, and so on.
In its latest report on the situation regarding 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 HIV/AIDS crisis".
"These figures are not exact due to the lack of a proper testing. I am sure that a testing done at a national level in Romania would reveal a grimmer reality", Claudia Catana, information officer with the Romanian Angel Appeal (RAA), says.
The representative of the Romanian organization which set up many HIV-related projects in the past 13 years added that such a testing was not possible because it would have proven too expensive for the already weak Romanian economy.
"The figures are much higher and many people are unknowingly spreading the disease. By law, the 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 says that most of these people were infected in hospitals before 1989, but the evidence were destroyed by the communists while they were still in power, so it is impossible now to keep track of the sick patients. "Most of the people who got infected at that time don't know it, even to this day", Catana says.
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".
Refuse of Health Care
One of the main problems Romanian people living with HIV/AIDS face is the denial of medical care.
After such a long time since he got infected, Mihai knows that the people living with HIV never have a perfect health, that they are vulnerable to the most serious diseases, some of which are rare even among human beings. Mihai says that what he personally needs to see more often was dentists and dermatologists.
"I always tell the doctor that I am HIV positive. I know that he should use protection when he sees a patient anyway, but I have always felt that it is my duty to inform him".
However, this behaviour has brought mental suffering 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 the refuse of adequate health care for those infected. Many doctors, except maybe in the ER, just won't see the HIV positive", Claudia Catana, information officer with the Romanian Angel Appeal (RAA) foundation, agrees.
The causes for this peculiar situation are sometimes justified with the lack of protection materials. However, Catana says, most of the time people are refused treatment because of "a mentally barrier, mostly generated by insufficient information on the HIV infection".
In order to help the HIV infected children, RAA has set up a network of 80 medical practitioners.
The persons in charge of the project say that, at first, it hadn't been easy to convince the doctors to come and work for them but, finally, the idea proved to be a success both among patients and medical practitioners. If, at the beginning, the doctors would see the sick people only in the spaces provided by RAA, now many of them take care of positive 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 fiercer against human ignorance", she confesses.
At 17, Sorina knows very well what "human ignorance" means as she has had to face the hardships of life more than the ordinary teenagers around her age, after she has found out that her mother is HIV positive.
"Not even to this day, people can't understand what serious effects HIV and AIDS may have on their life. Unfortunately, you come to truly realise what this menace is all about and that you can get the disease only when someone very dear to you gets sick all of a sudden", Sorina says. "We absolutely have to learn more about the virus and, for this we need the media, the teachers and the doctors".
Humiliation at School
Another form of social exclusion is the discrimination which sometimes takes the form of humiliation, which sick kids face at school.
The Romanian media often reports on cases of children kicked out of kindergarten or school after the teachers have found out that the kids are HIV infected. At other times, pupils are allowed to study at a certain school, but they deeply suffer from humiliation from both teachers and colleagues.
Mihai says that 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 got HIV. "If they knew, it would be a tragedy for me. No one will probably treat me normally again".
He says that it is easy for him to hide he is infected because he is living in a big city. "The people with HIV who are living in rural areas for example, are more vulnerable. Everyone knows everyone else there and the chance of keeping their secret is very remote".
However, not being able to tell the people around him what is in his mind 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".
Andreea, 10, says that she doesn't 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 the Romanian media.
A similar case is Maria's, a Romanian girl of 15, who has been living with HIV for several years now.
"When talking about the virus, people say all sorts of nonsense, like
"I can't even interfere in a discussion about HIV or AIDS with my friends. Especially when someone says things like
These children experience what psychologist Aurora 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 for patients, such as depression. The infected children see no helping hand, what they experience from the people around them is only rejection", Liiceanu says.
Under such circumstances, sometimes the parents would seek help at national or international human rights organisations. In the past few months, they have started bringing to justice the persons accused of discrimination.
Romania didn't have a law to protect the people with HIV/AIDS until less than two years ago. Only in November 2002, as a result of a continuous international pressure and criticism from different human rights organisations abroad, the Parliament discussed and voted such a law.
The law protects the people living with HIV/AIDS from social exclusion. It mentions the right to health care, to attend schools, to work. According to the same law, whoever knows is infected and spreads the disease can be convicted.
Authorities in northern Romania had to tackle a huge scandal last month, after some doctors discovered that a young man had donated infected blood at a hospital, in Iasi. The man was surprised to find out he was HIV infected. He was sent to the Infectious Diseases Hospital, to undergo a thorough blood examination.
"This case is not singular", Liana Velica, representative of the Anti-AIDS Romanian Association (ARAS), told the media. "The ideal situation would be for people to willingly undergo HIV testing instead of donating infected blood and only then to discover that they are sick", she said.
Like other Romanian organisations, ARAS is working to combat the lack of information about the virus. It has started various programs to counsel the people with HIV/AIDS. The less informed about the disease; however, prove to be the healthy people.
Mihai believes that people don't know anything or too little about the virus because getting to read or listen to others talk about it just makes them feel 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 only the result of promiscuity or drug use and they are convinced that since they lead a
Mihai thinks that there are many diseases that have a stigma attached to them, but the one which goes with HIV is the strongest. "This is simply because of an overwhelming fear of infection", he says.
The case which happened in Vrancea County, where two children living with HIV were kicked out of school last week, is just a follow-up of some other incidents, in the same area, in June this year and which proved once again what the lack of information can lead to.
Over 130 residents of the same village gathered signatures in protest and then turned to violence after they found out that the authorities wanted to set up a home for children infected with HIV/AIDS near their community.
Most of the villagers opposed the EU-financed project because, they told the media, they were afraid of the sick children. They were convinced that the disease would spread over the entire village. Surprisingly, many of the protesters thought one could get infected with AIDS from water or from mosquitoes, by touching the hens or even the objects that had been touched by a person infected with the virus.
At the time, the department for public health promised to launch a campaign to inform the villagers on the aspects related to HIV/AIDS infection. Finally, on September the 8th, the children arrived at their new home.
"I am not surprised this has happened", Claudia Catana, information officer with the Romanian Angel Appeal foundation says.
"Their reaction was only natural, considering that they didn't know a thing about the disease. The persons in charge of the project should have given all the information to the villagers first and then start building the home for the infected kids".
As for careless remarks and unfair treatment, Mihai says that this behaviour still upsets him, although he has been diagnosed for so many years now. "When it comes from the people least expected, this makes it doubly hurtful".
He says that, in the past few months, he has found out that animals' company can be more soothing. "My mother has brought me a puppy as a birthday present. 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 fear that he is going to judge me in any way".
However, Mihai admits that even his dog can't always make him forget about his disease better than it could have been with a human friend, just as it happens with his medication.
"I take over 20 types of medicine to keep me from getting sick, but sometimes it doesn't work. At that time, putting together those two words,
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