Testimony of Clarisa Bencomo, Researcher
Children’s Rights Division, Human Rights Watch
To the Committee on Social, Health and Family Affairs
Parliamentary Assembly of the Council of Europe
Wednesday, October 4, 2006
Dear Mr. Chairman, thank you for this opportunity to discuss the situation of Romanian children and youth living with HIV.
The Romanian experience offers two very important lessons for Europe: First, that even a country with limited domestic resources can leverage those resources to provide a high level of access to antiretroviral treatment. Second, that antiretroviral treatment alone is not enough to ensure the health and social inclusion of people living with HIV in countries with high levels of stigma and discrimination. Respect for human rights must be integrated into all efforts to treat those living with HIV and prevent the virus’ spread.
More than 10,000 Romanian children contracted HIV between 1986 and 1991. In the vast majority of cases these infections were a direct result of government policies that led to high levels of child abandonment and the use of contaminated needles and unscreened blood in government hospitals and orphanages.
Today there are more than 7,000 children and youth living with HIV in Romania. Almost all are between the ages of 15 and 19. Like many other teenagers, they are beginning their sexual lives, looking for their first jobs, perhaps thinking about leaving home. Unlike other teenagers, they do so while facing widespread social and legal discrimination in education, health, employment, information, and privacy. The government anti-discrimination and child protection mechanisms that should protect them are weak and frequently fail to investigate, monitor, and intervene in cases of discrimination, abuse, and neglect. Youth living in institutions are at risk of losing services before they are able to live independently or suitable sheltered workshops and living arrangements are available.
In February 2006 Human Rights Watch conducted in-depth research into the plight of Romanian children and youth living with HIV, through extensive interviews with such children and youth, their parents and foster parents, infectious disease specialists, staff at nongovernmental organization, and health and child protection officials. In August we released ‘Life Doesn’t Wait’: Romania’s Failure to Protect and Support Children and Youth Living with HIV, a 104-page report outlining our findings and recommendations for ensuring the rights of children and youth living with HIV.
I will summarize just a few of the key findings here:
Violations of the Right to Education
More than 40 percent of children living with HIV do not attend any form of schooling, and those in school often suffer abuse, harassment, and even expulsion if their HIV status becomes known. Children and youth living with HIV are barred by law from attending vocational programs in areas such as food service, hairdressing, and child care.
Violations of the Right to Health
Delays and shortages still result in interruptions of antiretroviral treatment in some counties, and stigma and bureaucratic delays create barriers to obtaining medications for opportunistic infections.
Doctors frequently refuse to provide routine and emergency care to people living with HIV, even when this refusal may result in serious injury. I spoke to caregivers who struggled to find doctors willing to operate on children with appendicitis, or to treat youth with serious psychiatric disorders that made them a danger to themselves and to others.
Violations of the Right to Privacy
Breaches of confidentiality by medical and school personnel and by government employees responsible for social and disability benefits are common and rarely punished. Children and caregivers described breaches of confidentiality that resulted in children being harassed and expelled from school and facing ostracism in the community. Some parents told me that their fear of discrimination was so great that they chose to forgo benefits for children living with HIV rather than risk disclosure.
In addition, Romanian law punishes the knowing transmission of AIDS with imprisonment for five to fifteen years, and infectious disease doctors told me that they provided police and prosecutors with information about patients living with HIV. Such legislation reinforces stigma; discourages voluntary testing and disclosure to partners; and encourages ad hoc police and community monitoring of children and youth believed to be sexually active. It is also contrary to the 1993 Recommendation of the Council of Europe Committee of Ministers on the control of transmissible diseases including AIDS.
Violations of the Right to Information
Infectious disease doctors told Human Rights Watch that up to 50 percent of the children they treat were sexually active, but many children lack adequate information on sexuality and on HIV. In some areas more than 30 percent of children living with HIV don’t even know they have HIV because Ministry of Health regulations prevent doctors from providing them this information without parental consent. Children who don’t know their HIV status often don’t understand why they must comply with complicated medical treatments that have serious side effects, and why they must protect themselves and their partners if they are sexually active.
Romania is in the process of expanding sex and HIV education programs in schools, but these programs don’t reach the 40 percent of children living with HIV who are not in school, and often start too late for children who are in many cases several years older than their grade level.
Discrimination and Barriers to Employment
People living with HIV who can work should be encouraged to do so. Instead, Romanian law and regulations arbitrarily prohibit persons known to be HIV-positive from working in a range of jobs—such as hairdressing, food service, and cleaning hotel—where there is virtually no risk of HIV transmission, and as a result school officials sometimes prevent children and youth from participating in vocational education programs in these fields. Laws on medical testing are complex, contradictory, and poorly understood, and as a result both public and private employers often engage in ad hoc HIV testing of current and potential employees.
Failure to protect children from abuse and neglect
Following decentralization child protection became primarily the responsibility of county-level child protection directorates, but staff at these directorates told Human Rights Watch they lacked the human and financial resources to monitor or investigate children at risk of abuse or neglect. Children and nongovernmental social workers who had reported cases of physical abuse and neglect to child protection directorate staff told me that months later the directorates still had not investigated their complaints.
Institutionalized children living with HIV who are returned to birth or extended families are at special risk of abuse and neglect because the lack of adequate monitoring is compounded by the government’s failure to provide these families the training and support they need to successfully reintegrate children with special needs.
Failure to Plan for Children’s Transition to Adulthood
In February and in August this year I asked Romanian government officials to describe exactly what their plan was for transitioning children living with HIV to adult services, and for providing continuing care for those young adults who might need it. Not one official could describe an existing program tailored to the needs of the thousands of children turning 18 over the next three years. There wasn’t even a plan to help youth learn about and apply for programs that would extend their eligibility for certain subsidies and services.
Many children living with HIV and those who care for them are understandably concerned about what the future will bring. Several children told me they feared that that their families or foster parents would reject them when they turned 18 and were no longer eligible for the same government subsidies. A foster mother told me she was struggling to continue to care for an 18-year-old former foster child now that government support had ended because the local directorate of child protection had said the alternative was turning her out on the street.
Even where subsidies will continue, the process is often arbitrary and opaque. For example, young adults should continue to be eligible for disability subsidies based on their HIV status, but social workers and youth who had been evaluated by the adult disability assessment committees described an extremely arbitrary process, where committee members rejected the medical assessments of infectious disease doctors without justification, voiced moral judgments about people living with HIV, or rejected disability claims based on mistaken beliefs about how someone with HIV should look. In some cases these decisions were overturned on appeal, but the appeal process is complicated and time consuming. Equally important, the system encourages people living with HIV to seek the highest level of disability, which precludes their working, out of fear that if they do no they will not be able to obtain it in time when their health does deteriorate.
Mr. Chairman, Romania and Europe have made a tremendous investment in medical treatment for children living with HIV, but that investment is being undermined by a failure to protect basic human rights. The Council of Europe, and the Parliamentary Assembly in particular, are well positioned to provide much needed leadership in this area, by highlighting shortcomings in Romania’s and other member states’ policies in the area of HIV/AIDS, and by formulating guidelines to address them, thereby providing Romania and other member states with a clear set of benchmarks for ensuring respect of treaty obligations to protect human rights.