Life Doesn’t Wait: Romania’s Failure to Protect and Support Children and Youth Living with HIV

[BUCHAREST, 2 August 2006] – Thousands of Romanian children and youth living with HIV face widespread discrimination that keeps many of them from attending school, obtaining necessary medical care, working, or even learning about their medical condition, Human Rights Watch said in a report released today.

The government’s failure to combat discrimination and promote integration has left many of these children vulnerable to abuse and neglect, ill-informed about sexuality, and unprepared for adult life, Human Rights Watch has found.

More than 7,200 Romanian children and youth aged 15 to 19 are living with HIV. The vast majority were infected with HIV between 1986 and 1991 as a direct result of government policies that exposed them to contaminated needles and “microtransfusions” in which small children were injected with unscreened blood in the mistaken belief that this would improve their immunological status.

The 104-page report, Life Doesn’t Wait: Romania’s Failure to Protect and Support Children and Youth Living with HIV, documents violations of the rights of these children and youth to education, health, privacy and information. It also shows how the authorities fail to protect these children and youth from discrimination, abuse and neglect.

“The Romanian government has known about these children for more than 15 years, but it still doesn’t have a plan for what will happen when they turn 18,” said Clarisa Bencomo, children’s rights researcher for Human Rights Watch and author of the report. “Unless the authorities take urgent measures now, unchecked discrimination will push far too many of these children to the margins of society.”

Fewer than 60 per cent of children living with HIV attend any form of schooling, and those who do risk ostracism and abuse by teachers and other students, and even expulsion if their HIV status becomes known. Some are inappropriately relegated to special schools with inferior resources, or barred from attending vocational programs in fields such as food service and hairdressing, for which Romanian law requires mandatory HIV testing.

Human Rights Watch found that doctors frequently refuse to treat children and youth living with HIV, or harass them to discourage them from seeking care. The problem is especially acute for children needing emergency medical care. It is a critical issue for those with serious mental illnesses who lack access to outpatient treatment, but whose health would be endangered by the substandard conditions in many Romanian psychiatric facilities.

Bureaucratic delays and discrimination bar many children and youth living with HIV from obtaining necessary medications for opportunistic diseases. Despite the government’s stated commitment to providing universal access to antiretroviral therapy, interruptions in antiretroviral supplies are common in some of Romania’s counties. Doctors told Human Rights Watch that government policies prevented hospitals from creating buffer supplies to compensate for anticipated delivery delays or shortages.

Breaches of confidentiality by medical personnel, school officials and government workers are common and rarely punished, despite the often severe consequences such breaches have for children and their families. At the same time, harsh punishments for knowingly transmitting HIV exacerbate discrimination and encourage government officials, police, doctors and even private individuals to engage in ad hoc “monitoring” of children and youth living with HIV. The risk of prosecution or monitoring appears to fall disproportionately on girls and women living with HIV. It may make HIV-positive youth less likely to seek assistance and support in a whole range of areas – from police protection to healthcare.

Doctors cannot inform children of their HIV status without parental consent, which prevents many children from making informed decisions on medical treatments, educational and employment plans, and their sexual lives. An optional class on reproductive health, offered once during the seventh grade, is inaccessible to the 40 per cent of children living with HIV who do not attend school, as well as to those children and youth who are sexually active but who have not yet reached the seventh grade.

HIV-positive youth may be denied jobs arbitrarily because Romanian law provides for mandatory medical testing for a wide variety of jobs where the risk of HIV transmission is minimal, and fails to protect individuals from HIV tests performed without informed consent by public and private employers. Employment discrimination cases are difficult to litigate and may draw further attention to plaintiffs’ HIV status because court documents are not private.

The Romanian authorities rarely enforce laws prohibiting discrimination against people living with HIV, and the law provides few real sanctions for those who practice discrimination. The agencies charged with protecting children from discrimination and abuse lack skilled staff to monitor, investigate and intervene on the behalf of children. Children and youth living with HIV who report instances of serious abuse rarely receive meaningful assistance.

More than 700 children living with HIV remain in extended family placements, foster care placements, group homes operated by nongovernmental organizations, and state-run group homes and orphanages. They face an uncertain fate when they turn 18. While some might be eligible for extended protection measures, no procedures exist to help them apply. Many will be unable to support themselves after turning 18 without significant assistance.

“Romania has come a long way toward fulfilling its commitment to provide antiretroviral medications to those who need them,” Bencomo said. “But children living with HIV need more than just medications. Even more than adults, they need protection and support.”

Human Rights Watch called on the Romanian government to protect the rights of children and youth living with HIV by: 

  • Ensuring their access to appropriate education, including information on reproductive health and HIV;
  • Ensuring their access to medical care, including medications and suitable care for those with mental and physical disabilities;
  • Ending mandatory HIV testing as a condition for employment;
  • Ending the criminalization of the knowing transmission of HIV;
  • Preparing those in foster, extended family and residential care for independent living; and,
  • Providing appropriate continuing services to young adults who many require them.

Selected testimonies from the report

“All the children made fun of me at my school. They said things like, “Don’t touch him, you’ll get it.” The adults saw it but didn’t do anything. One time, I fell under a tree and I couldn’t get up, and I asked my classmates to help me, but no one would and I was there for half an hour before I could get up. I was in seventh grade then. . . . In fourth grade a teacher hit me in the head with a shoe heel and my mother saw her do it. [That teacher] was fined but now she is back teaching again.”

– Nicu T. (not his real name), 17, Constanţa county, February 14, 2006

“The first time I went [to the dentist] it was OK. Then I told her that she has to put on gloves because I am positive, and she said that she has to protect herself and refused to see me.”

– Anica M. (not her real name), 19, Bucharest, February 16, 2006

“My mother doesn’t treat me right. She beats me with a poker, and she hit my head against a stove. … I spent two weeks living with a neighbor, and then my mother went to the police to tell them I ran away to hang out with boys and the police told me that I couldn’t leave home because I was sick. They said I couldn’t have a boyfriend or get married, I had to stay inside.”

– Laura K., (not her real name), 18, Constanţa county, February 15, 2006. Police and others in her community had learned of her HIV status after a teacher disclosed this confidential information to other students.

“It is too much to wish to work in a shop, because everywhere I would go they would ask me to show them my medical exams. That is hitting below the belt. Why would I need medical exams to sell shoes?”

– Anemona D. (not her real name), 17, Bucharest, February 18, 2006

Further information

 

pdf: http://hrw.org/reports/2006/romania0806/

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