Legacy of Shame

BUCHAREST, Romania—A small van edges onto a deserted street in northeast Bucharest. On the side of the vehicle, a glossy red ribbon—the international symbol of the struggle against AIDS—is almost unnoticeable in the darkness.

Here in this working-class neighborhood on the outskirts of town, no strings of blue lights hang from lampposts to celebrate Romania’s entry into the European Union like those you see in the downtown and shopping districts of the city.

In the front seat, Adrian Caraboi sighs and pushes his hand through his spiky blond hair. He normally moves at a breakneck pace, speeding around the city in this converted ambulance. Suddenly, he shifts to just above slow motion. If he’s going to have any success tonight, he must be patient. He takes another deep breath before jumping out.

Inside the van, there is a mobile HIV unit with three chairs, a large box of condoms, pamphlets, films and videos about prevention and a stack of rapid HIV antibody tests. Caraboi opens the back doors and a flood of light spills onto the street.

Faces start to peek out from cracks in the row of dilapidated buildings—the remnants of former dictator Nicolae Ceausescu’s housing policies that moved people from small family homes into flats. Some people call Adrian over to give him a high-five before they step out into the light.

Others are more confrontational. An older man yells with accusation and surprise, “You came back again, gadjo!” Caraboi just smiles and shakes the man’s hand. Gadjo is the word for outsider in the Romani language.

The few dozen people who make their way to the van four nights a week are some of the 5,000 Roma whom Caraboi visits each month. As part of his job as a project coordinator for the Romanian Association Against AIDS, or ARAS, Caraboi tries to convince Roma at risk for HIV to take antibody tests. It can take months or even years to persuade them because, as an outsider, he first has to earn the community’s trust. Since 2004, ARAS, which has eight offices in the country, has tested 2,074 Roma out of a national population estimated at up to 2 million.

None of the health workers who deal with HIV in Romani communities knows how many Roma are infected with the virus, but they believe the numbers are much higher than the government health agencies or the Roma themselves will admit. Many Romani children lived in orphanages or received medical care in the late 1980s and early ‘90s, when as many as 11,000 children were accidentally infected with HIV at state institutions during the tail end of Ceausescu’s reign.

The government started an official program offering free antiretroviral treatments for HIV in 2002, but few Roma have come forward to receive state aid. Discrimination, mistrust of state institutions, and reservations among many Roma to learn about and be tested for HIV could result in another generation of HIV-positive children.

The Health Ministry reports that there are only five cases of Roma with HIV or AIDS in the entire country, where the United Nations has recorded a cumulative 14,000 cases of HIV or AIDS. However, volunteer health workers on the ground say that close to 10 percent of the HIV patients they help are Roma.

At that rate, there may have been as many as 1,000 Roma who were infected in the original group of children, many of whom could have transmitted the disease without knowing it, and a large number of whom might have died without ever receiving treatment. Many Roma families still live in a climate of secrecy and mistrust making it hard to identify those infected.

It has largely been up to a small army of non-governmental associations to identify those Roma living with the virus and teach prevention methods. This is the complicated situation that Caraboi and other health workers are facing in their fight to have HIV recognized as even a potential problem among the country’s Roma. It’s a task that often requires more time and attention because of cultural traditions including adolescent marriage, home birthing, and a mistrust of birth control.

“The biggest problem,” Caraboi says, “is getting (Roma) to stop thinking, ‘No, no, no, I don’t need the test. AIDS is not for me, not for us, it isn’t here.’ ”

Medical misconceptions are difficult to overcome. Until recently condom use was rare among the Roma. “The worst thing anyone said is that I want them to take the condoms as a trick because I want them to have less babies and then there will be less Roma,” Caraboi says. Some of the free condoms he convinces people to take are sold outside of the community for pocket money, he says.

Recipe for Disaster

In a community as historically insular as the Roma, it is difficult to trace how a virus like HIV could be introduced. In 1990, when the accidental HIV infections first began to be reported, the groundwork had been laid under the Ceausescu regime. One of his first orders of business, after taking office in 1967, was increasing the population and workforce by outlawing family planning and abortions.

Then, over the course of two decades, Ceausescu drove the country into debt by building elaborate palaces and construction projects to “modernize” Romania. In the early 1980s he began imposing food and energy rations, he cut the budgets at social institutions, and began exporting fuel, food, timber, and anything else he could sell to reduce the national deficit.

The results were a high level of poverty and an increase in unwanted children. Romani families, which were already traditionally large, also increased in size at this time because even though birth control had never been widely accepted, abortions were common among the Roma. Children of all ethnicities were now being dropped off at railway stations and churches, causing the population in orphanages to swell to an unmanageable number.

State institutions were forced to deal with slashed budgets. Hospitals resorted to reusing needles and other materials that could be rinsed or quickly sterilized. Blood, however, was in large supply because donors were paid a small fee. So, when the orphanage pantries were down to just powdered milk, it seemed like a good idea to give the smallest and weakest children whole blood transfusions under the theory that new blood would have more nutrients for their bodies to use.

It was the catalyst for a health crisis.

In 1988, only 20 percent of the blood being donated was tested for disease. For that year, the Romanian government reported three cases of HIV infection to the World Health Organization. For the next year, the number swelled to nearly 1,200. Nearly 96 percent of those cases were children under 4 years old, 65 percent of the children lived in orphanages, and all of them had a history of multiple transfusions. The children’s epidemic was born.

After the 1989 revolution, the worst orphanages were closed. Several administrators who were interviewed by non-governmental organizations at that time said that up to 80 percent of the children in their care were Roma. But, because of a lack of record keeping, getting an accurate estimate of the number of Roma children in orphanages in the 1980s is nearly impossible. However, anecdotal evidence of a high number of Roma children in orphanages would suggest that the current government significantly underestimates the number of cases of HIV infection among Roma.

The Black Seas coastal city of Constanta is ground zero for Romania’s HIV epidemic, the place where the first cases were found and the place where the most Roma cases of HIV have been reported to NGOs.

Courageous Health Worker

In the living room of an AIDS hospice for 10 teenagers in Mihail Kogalniceanu, about 30 minutes north of Constanta, Dr. Rodica Matusa places a plate of fried and sugared dough on the table. Her grandmotherly smile, tiny glasses and round red cheeks are deceptive.

This is the face of a medical revolution in Romania. She was the first doctor to diagnose HIV in the children who had transfusions, and the first to come forward with her findings. Matusa pulls her purple shawl tight around her shoulders. It’s hard to picture her as a rebel, but at a time when police informers lurked everywhere, going against the government’s wishes was deemed revolutionary defiance.

When young children started to get sick in 1988 and 1989, they were all sent to Matusa. Over a period of five days, nearly 200 children piled into Constanta Hospital. They were in the advanced stages of AIDS. Without treatment, the average life expectancy for an infant infected with HIV is about three years. As the age of infection rises, so does the life expectancy as long as the child receives proper nutrition and isn’t exposed to illness.

These children who had been infected on average for less than three years were dying at the rate of 10 per day. There was no day clinic at the time to house all of them, no beds, no food because of budget cuts, no medicine because it had never been a problem before.

When Matusa informed the Health Ministry that children had died of AIDS complications, she recalls, she was threatened and told to change the cause of death to pneumonia or diarrhea. The Health Ministry felt the number of AIDS cases Matusa was talking about would have made Romania look bad.

The Securitate, Ceausescu’s secret police, began keeping files on Matusa, she says. HIV workers all over the country recount her stories almost like legends. All of them finish by describing how Matusa kept her own secret files of all the children with AIDS symptoms, hidden in a false compartment in her desk. She listed the cause of death as “SIDA” in red ink, she recalls, using the Romanian acronym for AIDS.

“I still have them in my office. They were under lock and key, but I have files for everyone so that we could track the disease,” she says. “The worst part was telling their parents. We would just quickly say it because there was nothing else we could tell them.”

Because blood wasn’t being tested and transfusions were common in regular hospitals as well. “Anyone who went to the hospital with a small child was susceptible,” Matusa says.

“This is not a disease of the Roma,” she says, pronouncing each word carefully for emphasis. “Of course there are a few cases, but they are not the majority. We do not want people to think AIDS is a Roma disease.”

The discrimination against HIV-positive people in Romania was profound. All of the children in the hospice were abandoned by their parents, who became frightened when they found out their sons and daughters were infected.

Matusa says the situation is starting to improve, at least for infected teens. The Health Ministry has started several public information campaigns to help spread public awareness, but many of the infected teens continue to keep their medical history a secret. Matusa is worried that the historic discrimination against the Roma will stunt the progress NGOs have had in gaining funding for programs and fighting public HIV discrimination.

Prejudice Persists

While many Romanians still harbor prejudice against the Roma, those infected with the AIDS virus have an even harder time. HIV-positive Roma have to hide the fact that they were even tested for fear of being ostracized. A Romani teen in a small village 40 miles from Constanta said that if her village knew she was HIV positive, they would ask her and her family to stop using the community water well, reflecting widespread ignorance about how the virus can be spread.

The number of patients hiding their real identities in Constanta started to make an impression on Crina Gutui, an HIV/AIDS worker who is Romani. Gutui would record people’s addresses on medical paperwork—addresses that were inside of Roma enclaves—but when she would write “Roma” under the space for ethnicity, people would correct her. “They would claim to be Turkish or Muslim, but I know their names, they are Roma last names,” she says.

Gutui says she believes that is one reason why the official number of Roma with HIV is so low. Over time, a large number of Roma started identifying themselves as something else whenever they could.

However, Gutui says more importantly many Roma are unwilling to come forward. “They have more problems in the Roma community with HIV, but they hide it. It’s shame about sexual disease. Even children infected don’t know it’s HIV, because their parents are ashamed they passed this disease to their children,” she says. “I see so many people who just don’t care enough. You really have to scare them, to tell them that this disease will make them die.”

Gutui left ARAS after two years with the program to go back to the community where she was born in rural Braila County, in southeastern Romania. Working there is an uphill battle, she says.

“To get them tested, maybe it is one or two years, but you have to work for 10 years here before you will change the way of thinking,” Gutui says.

Technical Difficulties

Back in Bucharest, Colentina Hospital is enormous, with more than a dozen wards and specialty units housed in a drab building. The hospital is guarded by armed security in the traditional navy blue jumpsuits and black berets of the government police services.

At the entrance on the east side of the hospital, a line of people stretches halfway down the block. Almost everyone in line is young. No one is laughing or talking, except to guess aloud when the iron gates will close. The remaining people will then be sent home. They are all dressed in layers of dark clothing with hoods, hats and scarves covering their hair and most of their faces to hide their identity.

Dr. Mariana Madarescu hurries through one of the hospital’s winding white stairwells, her arms crossed. As the head of Romania’s pediatric AIDS program, she is in charge of keeping all of the country’s HIV statistics. She rattles off statistics at the beginning of a tour of the hospital’s HIV/AIDS ward. There are 6,700 patients receiving treatment. Nearly 11,000 people have been infected, and the rest are being monitored until treatment with antiretroviral drugs becomes necessary.

Then she says, “There are five,” referring to the number of Roma infected. “It is not discrimination when there are only five cases of Roma diagnosed with HIV.”

The rooms are small and cramped with three beds and some dresser drawers in each. She hurries through introductions to some of the interim patients, starting with a three-day-old baby abandoned by her HIV-positive mother, who apparently was a prostitute. Health workers think the baby may be Romani. Madarescu says HIV tests show the baby is “100 percent” negative.

She waves hello to a 16-year-old mother, a runaway, who is one of the few people the doctor will admit might have gotten HIV through sexual intercourse. There are children with advanced AIDS who cannot leave their beds. They stare at the floor or the ceiling, alone in their rooms.

“Abandoned,” Madarescu says. They are all small for their age, 16 or 17, too skinny and fragile looking, as though their necks are having a hard time just supporting their heads. No one comes to visit them and for the ones who are in the last stage of the disease, no one will watch as their caskets leave the hospital.

The government started providing antiretroviral treatment to children in 1995, but the drugs were not widely available until a national AIDS action plan began in 2002. It did not include any specifics about how the drug program would continue to be funded, so until recently, foreign aid was the only way the program could keep going. It also did not include any programs to specifically address the Romani population.

“It is not a problem in the Roma community, and none of our programs are aimed at them specifically,” says Dr. Adrian Streinu, head of the infectious disease unit at Colentina Hospital. “Our first priority was treating HIV, and making treatment available to everyone.”

But critics say some Roma can’t get treatment if they suspect infection or already are infected with the virus that can lead to AIDS. And there is another problem: access to medical care. Getting health coverage in Romania requires proof of citizenship, usually a birth certificate. This is not easily done for many Roma. In rural communities, Romani mothers have their babies at home and parents tend to not get birth certificates. Filling out paperwork for health insurance also can be an involved process. ARAS workers offer to accompany families to help them apply, Caraboi says.

“Doctors will refuse to see Roma if they do not have identification paper or insurance card,” he says. When Roma test positive for HIV or other sexually-transmitted diseases, a representative of ARAS will accompany them to get treatments the first few times, in order to make sure they know where to go and what to do.

“Sometimes it doesn’t matter, sometimes it is just discrimination. Some doctors will say they are unclean, or smell and refuse to treat them for those reasons,” Caraboi says. “I have a special deal with a doctor I found. I pay him some money at the beginning of the year, and when I bring in Roma, he doesn’t ask for ID cards. I mean, this is the way most of Romania works. Everyone pays a little extra to make sure doctors take good care of them.”

Government Defends Policies

Vlad Iliescu, an official in the Health Ministry, defends the government’s health policies as open to all Romanians.

“When you talk about HIV, there is no special access for a certain category of people. Anyone is eligible for the free ARV (antiretroviral) treatments or any of the programs we offer. We don’t tailor them for any particular group,” he says. “We do have programs that address Romani healthcare needs. Out of roughly 8,900 community nurses there are 300 dedicated solely to the Romani communities.”

But voluntary associations and non-governmental organizations remain at the vanguard of helping the Romani community. A priest in Craiova, two hours west of Bucharest, talks to Romani teens about condoms, abstinence, and the effects of HIV. A doctor at Colentina Hospital makes sure to set aside a box of pamphlets that detail how new mothers can transmit HIV to their children through natural birth and breastfeeding. It will go to social services programs that work with the Romani community.

There are missions and churches that focus solely on taking Romani teen prostitutes off the street and getting them into group homes or schools. One group donates crates of condoms to ARAS.

Caraboi returns to the ARAS office. Tonight he is going to a new neighborhood, a little farther away. He stacks two boxes of condoms, counts out 100 HIV tests, and makes sure to bring extra paper pamphlets to hand out.

He takes a deep breath and prepares to begin again.

“I will get them to take the tests, and in one year,” Caraboi says opening the van doors, “when I return to test them a second time and they still don’t have (HIV) then I am successful. Then I will be happy.”