Pediatric AIDS in Romania -- A Country Faces Its Epidemic and Serves as a Model of Success

Karen Dente, MD, MA; Jamie Hess, MS III, BA

Disclosures

The staccato flickering of the fluorescent lights overhead cast shadows on the barren walls, revealing the angular bodies of children in rows of metal cribs. Babies tightly swaddled in tattered blankets lie intermixed with toddlers subdued by cloth restraints binding an arm or leg to the bars of the crib. In the corner of the room is a nurse left alone to care for these abandoned children. She looks barely old enough to be out of high school and is overwhelmed by the magnitude of the children's suffering. Because she knows that they are malnourished and severely anemic, she decides to inject each baby with a "microinfusion" of whole blood every day. The blood has not been screened, and she has only 1 syringe, which she uses on each child as she circles the room. Around the country, this standard practice purported to "boost immunity" ironically left a generation of children with the ultimate immunodeficiency -- HIV -- and so begins the complex story of the Romanian AIDS epidemic, in which 94% of initial cases were in children under age 13.[1]

In 1989, a dramatic epidemic of nosocomial HIV infection was discovered predominantly among orphans and hospitalized children in Romania. They were probably infected through transfusions of unscreened blood and injections with improperly sterilized equipment. (acute hepatitis B infection among young children in the late 1990s was also associated with receiving injections.[2]) Other underlying factors enabling the rise of this epidemic stem largely from Communist policies aimed at population expansion. Before 1989, under the Communist regime of Nicolae Ceausescu, abortions and forms of contraception were banned unless women had given birth to 5 children.[3] These policies, designed to coercively raise the birth rate, resulted in many infants being abandoned by their parents shortly after birth. Many of them were institutionalized in orphanages and hospitals by the state.[4] State-run "institutions" were created, but they were overcrowded and understaffed, failing to meet even the most basic needs of the children.[5]

While children were being infected with HIV in hospitals and orphanages as early as 1985, Communist leaders who refused to recognize the possibility of such illnesses in Romania barred doctors from discussing or diagnosing the disease. A sharp increase in infant mortality was attributed to vague causes, such as "respiratory illnesses" or "other endocrine and metabolic disorders.[6]"

Thus, a combination of unsound medical practice, the absence of single-use syringes, ignorance, policies aimed at populace expansion, paired with a refusal by the regime to acknowledge the presence of HIV/AIDS -- be it through failure of screening blood or denying the circulation of information about the disease to physicians and citizens[7] -- caused HIV to spread rapidly among children, resulting in an unprecedented epidemic. By the year 2000, 60% of Europe's pediatric HIV/AIDS cases were registered in Romania,[8] mostly in infants living in public institutions.

In mid-2002, 12,559 cases of HIV were registered in Romania (9936 in children), of which 2699 were already deceased. (There seems to be 2 arms for the epidemic of HIV/AIDS in Romania: one being the children infected iatrogenically from 1988 to 1991, and the other being the adult risk groups. Subtype F is the dominant strain of HIV, and fairly unique to Romania[9].)

After Ceausescu was overthrown in 1989 and subsequent Communist factions were swept away, successive Romanian governments worked to turn the situation around. Progress was made to combat the epidemic and provide treatment to those afflicted by HIV/AIDS. Syringes were distributed in 1990. Up until then, syringes were made of metal and glass cylinders and were boiled for reuse. Due in part to many power shortages, sterilization was not always done adequately, perpetuating the iatrogenic spread of HIV. Healthcare workers were trained to recognize and treat the clinical features of AIDS and HIV infection, and retrained in the proper use of needles, syringes, and sterilization equipment.

In 1995, Romania launched its initial AIDS program, and after 1997, moved quickly to tackle the epidemic and intensify its efforts with help from the World Health Organization.[9] The Ministry of Health developed guidelines for blood transfusions and issued a directive strongly discouraging the practice of giving transfusions to malnourished children. Hospitals and blood banks began to screen for HIV antibodies.

Recognizing the continued implications of the dimensions of the HIV epidemic that had infected about 10,000 children in the period 1987-1991, and a growing number of adults infected, the Romanian government decided to establish a National Multisectorial AIDS Commission under the direct authority of the prime minister on April 12, 2002, with the goal of involving other partners and defining priorities. It coordinated the relevant activities of 13 ministries, several nongovernmental organizations, representatives of the private sector, UN agencies and programs, and multilateral or bilateral donors. Romania declared HIV/AIDS a top health priority and launched the Action Plan for Universal Access to antiretroviral (ARV) treatment and became the first country in Europe to benefit from price reductions and facilities for ARV treatment. By March 2003, 4983 patients -- which included all those with AIDS actively seeking treatment -- were receiving ARV therapy in accordance with worldwide standard guidelines, making Romania the first country in Eastern Europe, and one of the few in the world, able to provide universal coverage to all HIV-positive persons.

A study conducted by the US Centers for Disease Control and Prevention (CDC) in March 1990 identified that 77% of the cases were from only 5 regions of the country, with the vast majority concentrated in Constanta, a large county in the southeast corner of Romania on the Black Sea. Beginning in 1990, all of the pediatric AIDS cases in Constanta were sent to a 1-room clinic inside of the Municipal Hospital under the direction of Dr. Rodica Matusa. Although armed with few diagnostic tools and limited treatment modalities, she offered compassion not found in the larger and more impersonal general hospital, where she saw healthcare providers so terrified to touch HIV-positive children that they would pick them up by an arm or a leg to minimize contact.

As more children emerged with AIDS-associated symptoms, the program rapidly outgrew the one tiny hospital room converted into a makeshift clinic. In November 2001, a team led by Dr. Mark Kline, a pediatric infectious disease specialist from Baylor College of Medicine, Houston, Texas, mobilized funding to renovate an abandoned orphanage into a day clinic called Central de Copii Romano-American. Finding adequate space for patient care was only one necessary element to providing effective treatment for the many HIV-infected children. Limited accessibility of ARV drugs that could help prolong the children's life span and vastly improve their quality of life remained the prominent hurdle. Although the Romanian government had promised to provide treatment, the selection of available drugs was limited and the combinations were often ineffective and conducive to resistance. In addition, major fluctuations in the Romanian healthcare budget often resulted in discontinuing or switching treatment. American drug companies were reluctant to donate supplies abroad at first, but became more receptive to the idea of a collaborative effort between the American and Romanian healthcare teams and the ability of the clinic to securely store drugs and supplies and maintain a reliable database of each dose of a drug dispensed.[10]

By creating public-private partnerships, Dr. Kline hoped to translate his vision into action in a way that would afford the children the best chance of long-term success. Multiple American pharmaceutical companies agreed to donate ARV drugs and other medications necessary to treat common opportunistic infections. In addition, large US government-affiliated organizations, such as the National Institutes of Health (NIH), CDC, and US Agency for International Development (USAID), provided unparalleled expertise as well as significant funding through ongoing clinical trials.

So far the program's impact at La Central de Copii (which means "children's center") has been tremendous. HIV has been transformed from a hidden, shameful disease suffered in isolation to a treatable condition shared by many children. Quantitative measures also strongly convey the early success of the program: As of August 2003, there were 452 children receiving ARV therapy monitored through the outpatient clinic. Their response to treatment has been extraordinary: Daily hospital admissions decreased from an average of 30 in 2001 to 4 in 2003. A sharp decline in mortality has also occurred, with a rate dropping from 15% to 3% after initiating highly active antiretroviral therapy (HAART).[11] The initial success of these programs demonstrates the feasibility of establishing HIV treatment programs in developing countries with the combined support of public-private partnerships.[12]

The pediatric clinic in Romania was one of the first attempts at a large-scale treatment facility for HIV-positive children in an underdeveloped nation. The team from Baylor International Pediatric AIDS Initiative has used their experience from the Romanian clinic to help create treatment programs in other areas. A larger model of the Romanian clinic was constructed in 2003 in Botswana, where over 1200 children are now receiving treatment. The Botswana Children's Center of Excellence has expanded into a family clinic, offering testing and treatment for entire families rather than just children. New clinics are expected to open at the end of 2005 in Swaziland, Lesotho, and Malawi in Southern Africa as well as Uganda and Burkino Faso, the first pediatric HIV/AIDS center in West Africa.

Despite these phenomenal accomplishments over the past several years in many of the poorest regions of the world, this unprecedented AIDS initiative is merely a foundation upon which to expand. As Secretary-General Kofi Annan said at a recent United Nations Children's Fund (UNICEF) and Joint United Nations Programme on HIV/AIDS (UNAIDS) Launch to fight global HIV/AIDS in children, "Nearly 25 years into the pandemic, help is reaching less than 10% of the children affected by HIV/AIDS, leaving too many children to grow up alone, grow up too fast, or not grow up at all. AIDS is wreaking havoc on childhood." According to current estimates, less than 10% of children orphaned and made vulnerable by AIDS receive public support or services. In sub-Saharan Africa, which has suffered the greatest impact, coping systems are stretched to the limit.[13]

The scarcity of healthcare workers trained in caring for patients with HIV is still a rate-limiting factor to success. The creation of a "pediatric AIDS corps" plans to send 250 pediatricians over the next 5 years to the most direly affected countries to work with local doctors and provide support for initiating and expanding treatment programs.

AIDS is arguably the greatest global healthcare challenge facing our generation. Albeit not a cure, a comprehensive treatment program can improve the quality of life for children with AIDS, while a successful vaccine or cure still remains elusive.

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