HIV and AIDS in Romania: taking stock
From a once dire position, in less than a generation Romania has stared down the spectre of HIV and AIDS. A combination of knowhow, strong collaboration between specialists, partnerships forged between NGOs and authorities, and supportive pharmaceutical companies has ensured that people living with HIV and AIDS can look to the future with a degree of hope
The moment Valeriu D. walks nto the room, the impression given is how ordinary and everyday is his appearance. A year or two beyond adolescence, dark-haired, tall, slim and bright-eyed, and dressed casually in the sloppy chic mode that is de rigueur with young Romanians of the day, with a backpack slung over his shoulder he could be the young man behind the counter at the government office, the waiter at the restaurant, or the shop assistant who helps you buy a new pair of shoes. He could be the next-door
Coverage of the fall of Romania’s communist regime during the revolution in December 1989 may be fading in the memory, but the photographs and footage shot soon afterwards by the first medical teams, diplomats and journalists who ventured into the orphanages housing Romania’s abandoned children remain unforgettable, indelibly stamped on the memory. Shaven-headed, semi-naked and malnourished, the cameras showed children in their hundreds dressed in rags trapped in barred, airless rooms, many tied to beds or rocking back and forth out of mind-numbing boredom. Of the injustices generated by the Ceauşescu regime this was to prove the most graphic, the most shocking. Beamed into homes across the world, the footage prompted global outrage, and medical provisions and aid poured into a country that had kept its bandoned children under lock and key for decades.
Elsewhere, earlier in the 1980s the first cases of AIDS were discovered and diagnosed. As researchers began to understand its complexity, they found that the virus was transferred between people by the exchange of bodily fluids – namely, blood and semen – between one infected person to another, and it was thought that preventative steps could greatly curtail the spread of the disease. The early history of HIV and AIDS saw its spread confined mainly to high-risk groups such as men having sex with men and intravenous drug users, and campaigns designed to make these groups aware of the disease, its dangers and prevention helped in its understanding amongst the public. The need for sterile, clean needles and the strict screening of blood in hospitals was emphasised in information campaigns around the world.
The 1980s was perhaps the most austere period in Romania’s modern history. Although the first case of HIV and AIDS was diagnosed in 1985, the country’s rulers did not consider the disease as a threat – or if they did, they weren’t saying so. Nor did they consider that high-risk groups existed. “This was probably one of the reasons they did not want to look at the possible risks of such an epidemic in Romania. The thinking might have been, ‘As these people did not exist, we do not need to explore whether we have a problem with HIV and AIDS,’” explains Eduard Petrescu, who has been the Country Coordinator for UNAIDS since 1997. “So until the end of the communist regime nothing was done in Romania to restrict the spread of HIV and AIDS.”
By then it had become clear that a further group faced grave danger – those who had been subjected to tainted blood or syringes and needles that had not been properly sterilised after medical procedures. Institutionalised children in Romania were therefore right in the firing line, and a combination of a health system on the verge of bankruptcy, decision makers that refused to take preventative measures, appalling living conditions, poor nutrition and the fact that Romanian children received five times the number of injections of Western European children before the age of one – a Human RightsWatch report showed that some hospitals would administer up to 120 injections per child over a four-week period – all conspired to make them particularly vulnerable. While senior health workers refused to accept that the disease could ever pose a threat in Romania, it had in fact already takenroot and was beginning to spread.The system was designed to cloak cases of child mortality, to divert any questions being asked of the health of children. At the country’s one facility that had the necessary equipment to test for HIV and AIDS hundreds of cases were diagnosed, including cases of children, but these were not reported.
The result of many years of chronic mismanagement was that in February 1990 children were discovered to be dying of AIDS in several hospitals throughout Romania. This news went straight out into the international media, as did the footage of the sick, neglected and disabled children that so shocked the world. One of the first humanitarian missions to Romania after the revolution, led by theWorld Health Organisation in 1990-1991, surmised that HIV infection amongst children might have had its source in the orphanages, so it set about testing all 120,000 institutionalised children. The result was that about 2,000 children tested HIV-positive. The children were not orphans – rather, they had been abandoned, most likely the result of unplanned pregnancies (birth control was illegal during communism) or the dire financial circumstances of their parents – so in many cases it was possible to test their parents for HIV and AIDS. Since many tested negative we can presume that the children had been infected through tainted blood, reused needles and syringes or poorly sterilised medical instruments.
As the world grasped the full extent of Romania's institutionalised children, international agencies poured into the country to try to help. At that time there was no specialised treatment available – except for associated infections that attacked the immune system, such as cancers and tuberculosis. UNICEF opened a country office in 1991 in Romania and prioritised HIV and AIDS programmes from the outset. Support was provided to different groups, especially NGOs which were providing medical and social
“In those early days UNICEF was very effective in helping to educate the population, in educating even the opinion leaders at a community level,” says Eduard Petrescu. “There were cascades of medical workers entering Romania – from trainers to teachers to social workers to hospital nurses trying to teach people about HIV and AIDS, and why there should be no problem to socially interact with a person with HIV.” Important too was social support for families, to help them cope with a child who was HIV positive. There were programmes that provided terminal care with some of the children in a more advanced stage, and UNICEF supported many programmes for abandoned children in Constanţa and in other parts of the country, making sure they had access to the best medical and family care. For abandoned children this was crucially important. UNICEF also put its support behind the NGOs that were providing nutritional programmes and advice for young people living with HIV, as good nutrition is one of the key elements in keeping the immune system strong. This area became a key focus.
The programmes evolved as the situation evolved. Because of the high international, media and emotional interest, there was always a focus on Romania about these children. Representatives from the private sector and drug companies began coming to Romania, to see what could be done to help, and to promote their treatments. As such Romania began administering treatment for HIV at the same time as the rest of Europe – probably not to the same extent, as financial resources were limited – but Romania started with the first drugs in 1995. The problem was that most of the drugs were designed for adults, since most of the people in the West with the virus were adults, not children.
With half of Europe’s HIV positive children, Romania found itself at the forefront of research on how drugs tested on adults could work with children. The focus on Romania turned out to be beneficial for both the country and children living with HIV, because today Romania’s experience has proved invaluable for the early treatment of children with HIV; this experience is already available for other countries to learn from, especially in the Balkans and CIS countries. UNICEF has organised study tours for professionals from Belarus, Moldova, Kazakhstan, Kyrgyzstan,Tajikistan, Ukraine, and Uzbekistan. People participating in study tours have learned about the challenges that Romanian professionals encountered and how their perspective in dealing with similar situations in the 1990s has changed.They have learned that with perseverance and commitment there is hope, and that problems can be overcome. Latterly, the Romanian government has expressed an interest in helping other countries design their own treatment programmes.
Like thousands of his contemporaries, Valeriu D. had entered Romania’s health system of the early 1990s for what should have been a routine check of a digestive complaint. Barely a year old, his memory of the hospital is scant. Three years later, just prior to entering kindergarten, he was instructed to undergo a series of tests before being admitted, as did all children going to school at that stage. The tests showed that Valeriu was HIV positive, although that outcome was kept from him until later, when Valeriu was at school. To rule out the possibility that he had caught it from his mother, both his parents were tested and both were negative. That only left one possible source of contracting HIV: during a medical intervention.
Valeriu’s parents did not tell him that he was HIVpositive for some years. What would be the point? He was too young to understand, anyway. Once he had learnt to read and write, he found some documents and asked his mother about them. “You have hepatitis and you need some vitamins,” he remembers her saying. Unsatisfied, he focused on finding the real truth. It was not difficult to make the connection with the trips to the clinic, where ‘HIV’ was written in brutally bold lettering wherever he looked, the blood samples – too numerous to count – and his faltering physical condition. And why, he wondered, could he not go outside and play with his friends? Why did he always have to stay at home?
The first time that Valeriu knew he was different was when his parents told his teacher about his condition. He was at school at that stage, aged 10 and in the fifth grade of a normal school when, concerned about his health, his parents visited his teachers and told them of the reason he would easily run out of energy and suggested that he be excused from anything too strenuous. The very next day the teachers held a meeting, not with the parents but all the children in the class. As it happened, Valeriu was absent that day, probably at the hospital. When he returned to school the following day, he found the whole atmosphere had changed, as had his schoolmates’ attitude. They weren’t being mean or teasing him, but they were different, more aloof now that his ‘little secret’ – his words – was out. Until then, he had not thought of his HIV status as much of a problem.“When you have HIV, you learn how to protect yourself, and others.”“Between 1997 and 2000 many new drugs weremade avalaible and many, but not all HIV patients had access to treatment,” says Eduard Petrescu. The financing base of the health system was in transition from a state budget to an insurance system, which probably could have been better managed. “The result of all this chaos, together with some political chaos, ended in a major crisis in 2001, and a lot of children and adults who had started treatment had to stop treatment, due to financial reasons,” he continued.
A key moment came when the UN intervened, after UNICEF and UNOPA – the Union of National Organisations of People Affected by HIV and AIDS – had approached the Ministry of Health to include Romania in an already existing programme that provided HIV and AIDS patients from countries in Africa, Asia and Latin America with drugs from the five major pharmaceutical companies at reduced prices. Romania’s government had to commit to provide drugs to anyone who needed them, with pharmaceutical companies providing drugs either at deeply discounted prices, or partly as donations. The agreement, facilitated by the UN, was negotiated in two months in 2001 and was signed during theWorld AIDS Summit in June 2001. UNICEF and UNAIDS worked with UNOPA and the government to ensure procurement, to update national guidelines, and to improve the national registry of HIV and AIDS patients for easier monitoring. At the next WHO/UNICEF assessment in 2003 universal access was proven.The budget of the programme is reflected by its complexity – and, of course, by the number of its beneficiaries. In 2001, the budget for treatment was $1.5 million; in 2008, it was around 70 million euros. The number of patients in the programme has increased from 2,000 to almost 7,500. It is not only the cost of the treatment that has become more complex and more expensive. “As you progress through a treatment, the drugs become more and more expensive.”
At the beginning of the 1990s, few people thought these children would survive. Many of them were frequently ill, and the quality of their lives was low. Many of them were abandoned, and had either dropped out of school or had not even begun school in the first place. Every indication ointed to their dying young. After 1997 when treatment became more widely available and the standard of their health improved, many had problems starting back at school or finishing school. So the rate of school graduation amongst Romania’s long-term HIV survivors is very different to that of the general population. Many have completed only primary school; few have completed high school, and even fewer have been to university. Now, many are enrolled in programmes through UNOPA and supported by UNICEF that assist them back to school, so that they may continue with their education. They are covered by social security, receive a small income and vocational programmes exist to help them promote their chances in the work force. Indeed, in 2009 UNICEF is supporting the implementation of a project that assists young people living with HIV and AIDS in social and professional integration, responding to needs that can involve continuing education, finding a work place and urging employers to support their professional integration.
Furthermore, they are excellent counsellors and activists, and both UNICEF and UNAIDS have worked with them in all their HIV and AIDS-related campaigns since 2001. Particularly active within UNOPA is “the Fighters“, a group that teaches people about HIV and AIDS, how it is transmitted and how it can be prevented. But whether the campaigns are about prevention or raising awareness or combating discrimination, people living with HIV and AIDS in Romania provide valuable input, and have launched some of their own campaigns through UNOPA, after establishing their own allies and partnerships. “The upshot is that we have a ‘combat’ group of 7,000 people with HIV and AIDS. They are young adults who want families, who want children, they want a sex life and a social life. Some of them were very ill for years, and now they want to make up for all the things they’ve never had in their lives,” says Eduard Petrescu.
As Romania has become a low prevalence HIV and AIDS country, UNICEF is targeting most at risk adolescents (MARA) – adolescent boys and girls engaging in high risk behaviour. Within a multicountry programme UNICEF and its partners (the Ministry of Public Health, National Anti Drug Agency and University of Sociology and Social assistance) has performed a baseline study on their behaviour, which is to be launched in 2009.The study will ensure the evidence and tools necessary for HIV prevention and intervention among vulnerable groups are available to the key stakeholders, government and nongovernment partners. Furthermore, in partnership with UNODC, in 2009 UNICEF is working with seven NGOs aiming to build on existing services and insure MARA access to HIV prevention and other medical and social services.
Fighting HIV and AIDS in Romania has been the result of hard work, joint efforts and strong teams formed by health professionals, psychologists, NGOs and government partners working together; UNICEF, other UN agencies and international organisations have supported their engagement and commitment. There is a long list of people who have committed themselves to the cause of the children infected with HIV and AIDS, which includes Dr. Rodica Mătuşa, Dr. Mariana Mărdărescu, Elena Cişmaşu, Mirela Ivan, Prof. Univ. Dr. Sorin Rugină, and Prof. Univ. Dr. Adrian Streinu Cercel. Support was ensured for these children by NGOs such as Casa Speranţa, Fundaţia Baylor Marea Neagră, Alături de Voi, Asociaţia Română Anti SIDA (ARAS), UNOPA, and Romania Angel Appeal, that worked in close collaboration with infectious disease hospitals in Constanţa and Bucharest.The partnerships have been built on personal commitment and strong relationships. Now they can all be proud of their achievements.
Valeriu D.'s experience with the disease mirrors the changes in fortune of Romania’s HIV patients. After finding that his immune system was extremely low and that he was not responding to the prescribed drugs, he was forced to drop out of school for two years. Now, however, he is receiving the right combination of drugs and although aged 20, with the help of UNICEF he is back at school and making up for lost time. Working by day on schoolwork and by night designing websites, his ambition is to become a fulltime website designer. He has already created several that are smart and technically inventive, and is working on more. There is little that he can’t do, provided he takes proper care of himself and continues to receive medication, which now consists of twice-daily pills. As well as that, Valeriu has harbored his experience with HIV and become part of the Fighters; his presence, and the presence of other people living with HIV and AIDS, forms an important role of the fight against AIDS. When he talks to people about the disease, he tells them that HIV and AIDS is a disease that can be controlled. “I don’t have any reason to be unhappy, or angry,” he says. I’m happy because I feel great, and that means a lot. I have the opportunity to do whatever I want to do, to make my life continue smoothly and normally like other people.”
AT A GLANCE: HIV and AIDS cases in Romania
AT A GLANCE: UNICEF Romania’s HIV and AIDS programme
The primary focus of UNICEF Romania’s HIV/AIDS programme is prevention of HIV infection and capacity strengthening in partnership with both the government structure and NGOs to better respond to the HIV epidemic. Projects developed under the HIV and AIDS programme have objectives that include:
• working at policy level with government partners, UNICEF is promoting the inclusion of most at risk adolescents (MARA) into the National Strategy
• baseline research study on MARA will be launched in 2009; will contribute to HIV prevention and access to other medical services for most at risk adolescents
• supporting programmes and implementing activities to facilitate access of young people living with HIV/AIDS to school, vocational training and jobs
• promoting Romania's achievements and models in HIV prevention and treatment, and supporting experience sharing with other countries in the region UNICEF Romania was active in the area of policy change and system reform.
Some successes which UNICEF has contributed to include:
• establishing the National Multisectoral Committee for HIV and AIDS
• including prevention of mother to child transmission in the National Multisectoral Committee for HIV and AIDS services
• capacity building and assisting the development of associations of people living with HIV and AIDS, especially for adolescents and young people
• support for the establishment of the National Anti Drug Agency and the county centres for prevention of drug use
• support for development and implementation of “Health Education in Romanian Schools”, a national programme comprising specific information on HIV and AIDS prevention