How AIDS Came to Romania

Eight months after the cadaverous images of Romania’s babies with AIDS first shocked people throughout the world, almost every one of Romania’s orphanages and children’s hospitals provides a heartening example of the help being provided by European and American philanthropy. Yet at the same time, each of them continues to bear witness to the grisly legacy of the Ceausescu regime.

This evidence is not difficult to gather, as we found on a trip this summer sponsored by Helsinki Watch.¹ After Nicolae Ceausescu’s overthrow on December 22, 1989, a country long sealed-off suddenly opened. Orphanage directors and hospital physicians now allow visitors from abroad into institutions that were once hidden away, and officials of the new National Salvation Front government readily discuss (if, at times, self-servingly) the past record. The consequences of Ceausescu’s systematically oppressive rule over a country that lacked both democratic traditions and independent associations of professionals, such as doctors, can now be seen all the more starkly. It is becoming possible to understand how a country in which families, not strangers, traditionally cared for the young and the old could produce thousands of abandoned children, and how in a country whose isolation and poverty might have insulated it from AIDS, children became afflicted by an HIV epidemic.

Currently there are 683 children between the ages of one and four with AIDS in Romania. At least another 1,000 are HIV positive. They live for the most part in Dickensian institutions built by the Ceausescu government to deal with the consequences of its policy of coercively raising the birth rate. Thousands of young people live in bleak, understaffed orphanages where a visitor seldom sees a child with a toy or a book. The egregious neglect and disease that one observes are not only the product of oversight and inattention (as is often true in developed countries), but of deliberate government policies. Ceausescu, by all accounts, was a simple-minded and doctrinaire Marxist, who made production the goal of the state, and classified citizens by their productive capacities. In October 1966, one year after he took power, he promulgated “pronatalist” laws aimed at compelling women to have children.

In the effort to raise Romania’s low birth rate (in 1965, there were only six thousand more births than deaths), Ceausescu banned all means of contraception, increased the taxes of childless couples, and, most important, prohibited abortion. In Romania, as in Eastern Europe and the Soviet Union, pills, condoms, and IUDs were scarce and expensive, and abortion was the primary means of birth control. In 1965 approximately 1,000,000 abortions are estimated to have been performed in Romania, terminating 80 percent of all pregnancies.²

The immediate impact of the policies intended to encourage childbearing was to increase population growth (which rose to a rate of 18 per 1,000 in 1967). But couples found a variety of ways to limit births (such as using the rhythm method and frequenting prostitutes), and the numbers slid (in 1975 to 10.4 per 1,000, and in 1980, 7.6). During the 1980s births fell by 2.9 per 1,000, during a time of severe economic stagnation and desperate hardship (exacerbated by Ceausescu’s determination to pay off all foreign debt), which gave Romania the lowest per capita income of any European country.³

The regime’s response was to intensify its policies promoting more births. To qualify for a legal abortion, a woman now had to have five, as opposed to four, children at home under the age of eighteen. Nor did Ceausescu try to make things easier for families with children: maternity leaves were the briefest in Eastern Europe, large families received few tax benefits, and day care and kindergarten services were utterly inadequate.

From the start, the regime conscripted the medical profession into its campaign to promote births. Gynecologists were required to conduct periodic examinations of women (every four months at factories, for example) and to take the names of all those who were pregnant; they were prohibited from fitting women with IUDs and were required to report all those who entered hospitals suffering from the complications of crude abortion attempts. On the whole enough doctors cooperated with the regime so that the denials of complicity one now hears ring hollow, and these denials of complicity go only so far. No physician we met admitted to having performed abortions, but they all said they knew of someone who had—perhaps for reasons of principle, more likely for money. A few of them had been caught, tried, and jailed for terms of two to three years. Had the medical profession and its leading members ever taken a stand about the gynecological examinations, we asked, or, for that matter, had they criticized any of Ceausescu’s other brutal medical and social policies? Not that anyone could recall.

Which groups in the population were most affected by the policy promoting births? Not the urban middle class, whose members managed to get contraceptives on the black market—the preference being for an IUD if a doctor could be bribed to fit it. They could also afford medical abortions—a Bucharest student told us that several years ago when his girlfriend became pregnant, the abortion had cost him 5,000 lei (about $50 on the black market). And several women with professional degrees told us matter-of-factly that when the government gynecologist-inspector had come to their offices to examine the female staff, they had simply refused to cooperate, and nothing more was heard about it. Nor were most of the people in the more rural parts of the country deeply affected. The orthodox Christians had long shunned birth control and abortion, and others, like the gypsies, chose not to practice it.

The brunt of the policy fell on the lower middle class, particularly factory workers, single women, urban gypsies, and those from disorganized or troubled families—none of whom had the cash or the connections to circumvent the regulations. The choices open to women were as limited as they were threatening to their lives. Some of the women used dangerous methods to carry out abortions by themselves; others went to cheap back-alley abortionists; others carried their babies to term, and others may have turned to infanticide.

The numbers will never be known, but every physician we spoke to reported that deaths of women from septicemia had been frequent during the Ceausescu years; there are grounds for claiming that abortion-related deaths increased by 600 percent after 1966.⁴ Indeed, many physicians were certain that botched abortions accounted for a significant number of birth defects and handicaps. (This was not the only cause, for the toxic conditions in workplaces were probably more damaging.)

One point is indisputable: during the 1970s and 1980s, the number of unwanted children increased dramatically. Some women gave birth and abandoned their children immediately. Others took them home, could not feed them, and, demoralized by the demands of work and family, brought their malnourished children to hospitals, and then abandoned them there. As the director of one orphanage put it, every child has its own story, but virtually every story opens with Ceausescu’s pronatalism.

The regime’s response was not to modify its edicts but to create a network of custodial and caretaker institutions that might seem reasonably conceived at first sight but in fact was bizarre and cruel. At the base of the system, serving all children between birth and three years old, are the leagane, as orphanages for the very young are called, with a total of 11,000 to 15,000 residents, under the administration of the Health Ministry. Children considered physically and mentally “normal” go on from there to institutions that house three- to six-year-olds, and then to those that serve six- to eighteen-year-olds. Some 40,000 children between three and eighteen are now under the jurisdiction of the Education Ministry in these institutions.

Children found to be abnormal, that is, those that a team of psychologists and pediatricians diagnose as “irrecuperable,” because of paralysis, blindness, or mental disability, are consigned to separate institutions. Those for children ages three to eighteen hold 15,000 children; the institutions for young people eighteen and over hold another 15,000. By an odd leap of logic, a regime that prized productivity assigned the care of children classified as “unproductive” to the Ministry of Works. To this ministry, of course, these children were of little importance; they and their problems are completely outside the interests of the officials in the ministry, who have no training in setting up educational, workshop, or therapeutic programs for “handicapped” children.

Not surprisingly, conditions in the orphanages run by the Education Ministry for normal children were not as grim as those in the institutions for the handicapped. In fact, a few of the orphanages, such as Leaganu Number 1 in Bucharest, had been showpieces for the regime, not only to fend off foreign criticism but to attract foreign capital: just as Ceausescu was willing to send Jews to Israel and Germans to Germany if he was paid the right price, he sold orphans to would-be parents. They came to Leaganu Number 1, saw the child, paid hard currency (anywhere from $1,000 and up), and took home a white baby. Thus a policy initiated to increase the national birthrate culminated in selling thousands of infants—just how many we probably will never know.

However coercive Ceausescu’s pronatalism and however wretched most of the institutions, the question remains why 683 children between the ages of one and four now have AIDS, and how at least 1,000 became HIV positive. The main cause of the epidemic, to use the technical term, was nosocomial—HIV infection was conveyed through medical treatment. No doubt the political and economic practices of the Ceausescu regime helped create the conditions in which the disease could spread. But Romanian doctors and nurses, through ignorance, incompetence, cowardice, and frustration, were directly responsible for spreading it.

The regime systematically isolated physicians from colleagues abroad and from each other at home. Always hoarding foreign currencies, the government made it nearly impossible for libraries or doctors to subscribe to foreign journals, obtain foreign books and reports, or travel to conferences. (A kind of medical samizdat did exist, with cigarettes bartered for copies of important articles, but the scientific publications were and still are unavailable.) This intellectual quarantine guaranteed that Romanian medicine would be a backwater, while it was training many third-world doctors (since Ceausescu wanted their hard-currency payments), and treated many of its own citizens, however incompetently.

With even graver consequences, the regime refused to acknowledge the presence of AIDS, and tried to prevent information about the disease from circulating among physicians. As late as 1989, medical meetings could not include a session on AIDS.

The most damaging result of the regime’s refusal to acknowledge the threat of AIDS was that no attempt was made to screen the blood supply. By 1985, the technology for screening was widely in use elsewhere, but not in Romania. (Indeed, as of this August, more than half of the country’s districts still cannot screen blood.) The failure to screen blood had devastating consequences, for the epidemic among the children, as we shall see, did not begin until well into 1988. In effect, the outbreak of AIDS among Romania’s institutionalized children was not a cruel accident of fate, a regrettable but unforeseeable contingency, but the result of Ceausescu’s determination to conceal the problem and to devote no resources to preventing its spread.

To most experts following the pattern of the disease in the West, the risks of an epidemic in Romania would have seemed low. The country was too poor to support an active drug trade, and the regime was so repressive of homosexuality that there was no active community of homosexuals through which the disease could spread. Moreover, Romanians rarely went abroad, and aside from some third-world medical students and dock workers, foreigners rarely visited. The cases that appeared in sailors, homosexuals, and foreign students during the mid-1980s might still have remained no more than an isolated handful, if not for the additional fact that some of them donated blood.

Blood was a form of baksheesh in Romania, donated by people who expected to receive favors from the government by doing so. As Doctor André Combiescu, who was recently installed as director of Bucharest’s most important medical research institute, informed us, the regime did not coerce people to donate blood but set quotas for various regional offices. The official rate of exchange for every donation was a free meal or one or two days off from work. (When we said that two days’ holiday seemed a lot, he remarked that in Ceausescu’s Romania no one worked very hard in the first place.) Unofficially a blood donation might be traded for a driver’s license, or the renewal of a student visa, or a job. So ordinary citizens, foreign students, and workers, including dock workers, had many reasons to donate blood. Most of those who were HIV positive had not been tested for the virus, and they donated blood along with the rest.

Even with the censorship of medical information and the extorted donations, Romania might still have avoided an epidemic, for in a country where medical technology is relatively primitive, transfusions are rare. There are no bypass operations or hip replacements. (Getting an X-ray, one doctor told us, was like going to Chernobyl.) But it does have the oddest of medical institutions, the dystrophic hospital, which to the best of our knowledge is to be found nowhere else.

Dystrophic hospitals were, as Doctor Combiescu explains them, an ad hoc response in the early 1980s to the regime’s insistence, as part of its intensified pronatal campaign, that any death of a child under the age of one be the subject of a formal investigation. Romanian doctors struggled to do everything possible to get infants past their first birthday. Although the precise origins of the practice are obscure, physicians began to group together all the infants whose lives seemed at risk; by 1989, the so-called dystrophic wards and hospitals organized exclusively for very sick children held some 2,400 patients.

In these wards and hospitals, as elsewhere, the treatment was limited. Malnutrition, accompanied by infection and anemia, was a constant threat. Since antibiotics were generally available, doctors relied on them heavily, which in itself would not have been disastrous, except for the fact that the doctors always insisted on injecting antibiotics and did not administer them orally. In third-world countries it is commonplace for patients to demand injections (of whatever sort) from doctors. For many people, syrups are the lowest order of drugs, pills come next, and, at the top, injections. In Romania, the doctors themselves succumbed to the mania for injections, even though they knew that nurses would administer them without sterilizing needles. Since hepatitis B has long been widespread in Romania, many doctors must have realized that it could only have been transmitted through infected needles. Did the nurses themselves know how dangerous their actions were? Perhaps not, for many of them had no formal education beyond two years of high school—the regime refused to invest in nursing courses—and very little on-the-job training. The nurses were working in often unsupervised wards in which there were no disposable needles; the containers for sterilizing instruments were antiquated, and nurses were evidently too ignorant or too tired to spend the fifteen minutes necessary to boil the needles.

The dystrophic hospitals’ methods for treating children included a disastrous practice called microtransfusion—transfusion of three to six tablespoons of whole blood. Here again, the precise origins of the practice are mysterious. It may have been a carry-over from folk medicine. One American physician told of observing such transfusions in Korea in the 1950s, and another had heard of a similar procedure being used in Eastern Europe before World War II. More likely, the Romanian practice underscores the dangers of a little learning: doctors thought that the transfused blood would be rich in proteins, hemoglobin, and antibodies and would boost a weakened infant’s immunological system and nutritional state. But as any adequately trained pediatrician knows, it doesn’t work that way. Microtransfusions are wholly useless; too few antibodies are transmitted, the iron and other nutrients will not be absorbed, etc. The alternative, of course, was to try to feed the children preparations of powdered milk and fats, either orally or through an intravenous tube, although if the case were very severe, such interventions might not succeed either. But rather than concede their own impotence—respecting medicine’s most ancient maxim to do no harm—and subject themselves to questions, forms, and state investigations, Romanian doctors practiced an outlandish form of medicine, and did far more harm than good.

Some infants were sturdy enough to survive their stay in the dystrophic hospitals, and some of them, abandoned by their families, were sent to the orphanages. The physicians in charge of the hospitals and orphanages, or those treating the children there, sometimes administered additional microtransfusions. But more often they treated, in staggering numbers, a variety of ailments by injecting the children with antibiotics. Apetrie Roxanna, an epidemiologist at the Health Ministry, gave us her preliminary impressions of the hospital treatment charts of AIDS babies she reviewed in two Romanian provinces, Constanta (150) and Ialomita (100). (She is now in Atlanta completing her analysis of the charts at the Center for Disease Control.) What most amazed her was the number of injections that these children had received both in the dystrophic hospitals and in the orphanage: 120 injections over a four-week period was not uncommon. (To her dismay, she finds that the number of injections has not diminished since January, and she still sees notations of microtransfusions on patients’ charts.)

Thus, the factors promoting contagion were all in place: microtransfusions of HIV blood infected a small number of babies in a dystrophic hospital; the needles were reused for administering antibiotics and spread the infection to other patients. When some of these infected infants entered an orphanage and eventually received injections of antibiotics, the reused needles spread the HIV infection to still others in the orphanage. As of June 30, 1990 (according to the latest quarterly Health Ministry survey), the total number of AIDS cases in Romania was 741, of whom 683 were children under four years of age (280 under a year, 403 between one and four). Of the others, 1 is in the group of children between five and nine; 3 are between ten and twelve years old, and almost all of the rest, between twenty and fifty-five. The precise number of children who still seem healthy but are HIV positive is still not known, but very preliminary data indicate that it cannot be fewer than one thousand. Although not all mothers of AIDS babies could be identified and tested, it appears that in fewer than 5 percent of the cases was the disease transmitted from mother to child.

Twenty-five percent of the cases were diagnosed in 1989, 70 percent between January and June 1990. This fact, together with the high incidence of the disease in infants under four and the likelihood that about one year elapses between the infection of the children and their first symptoms, makes it evident that the spread of the disease to children occurred after 1985, and most of it after 1988. What happened to these AIDS babies could easily have been avoided. This plague was truly man-made. Its origins are in Ceausescu’s policies, and it spread because of bad medical practices.

Since coming to power, the National Salvation Front has abolished pronatalism, and thousands of abortions are being performed daily in Romanian hospitals. Other means of contraception are just now becoming available. The number of children in the orphanages is declining, in part because admissions are down, but in part, too, because adoptions are up. White babies available for adoption are scarce in both Western Europe and the United States, and would-be parents are flocking to Romania to find them; not surprisingly, no one in the Health Ministry is willing to monitor the adoption process very closely or to try to keep the babies in the country. Many European and some American organizations, as well as hundreds of foreign private citizens, are taking care of children in practically every institution and hospital in Romania, and they are trying, not yet very successfully, to provide technical assistance to the Romanian staff. The volunteers seem impressive in their dedication, the more so when one sees the conditions under which they must work and notes the length of the lines they must join to obtain food from the local grocery.

These changes notwithstanding, the heritage of the Ceausescu regime will be very difficult to overcome. Even professionals in Romania have an ingrained suspicion of practically everything they hear or read, particularly if it comes from official circles. Having been subjected to doublespeak, lies, and rumors for so many years, they have difficulty distinguishing fact from propaganda. As a result, the microtransfusions continue, as does the cult of injections, despite directives from the Health Ministry and repeated admonitions from visiting doctors and nurses.

Moreover, in view of the poverty and industrial backwardness of the country, a number of disasters could occur when the contributions from abroad slacken, as they eventually will. Equipment for HIV blood screening is now arriving, but where will the replacement parts come from a year from now? The millions of disposable needles that have been sent will last no longer than six months. The lethargy of the work force is striking, and we are told that some 600,000 Romanians (apparently the ambitious ones) have already emigrated. Who will be left to build the new system of production and distribution that must form the basis of an effective health care and child care system?

With these questions in mind, and on the last day of our visit, we met with Dr. Bogdan Marinescu, the new minister of health, who was trained as a gynecologist. A man brimming with energy, he had no illusions about the difficulty of his task or the number of people looking over his shoulder. Although he has been in office only a few months, Marinescu seemed to have an acute sense of the problems of the system, but little grasp of the limits of his own authority. He was surprised to learn, for instance, that several of his orders—including an order to stop giving microtransfusions, and an order to move healthy abandoned children immediately from dystrophic hospitals to the orphanage—were disregarded by many institutions. He jotted down names and places. He described the bureaucratic maneuvers he is using to move the institutions for the “handicapped” from the authority of the Ministry of Works to his own.

We raised a troubling issue that came up in many of our talks: since an unknown number of institutionalized children were HIV positive, and not all of them were clinically ill, was it possible that some would move on to orphanages for three- to six-year-olds and spread the infection further? Marinescu believes that disposable needles and training will reduce this danger. Clearly someone who respects human rights, he is firmly opposed to the segregation of HIV-positive children in separate institutions.

Marinescu recognizes that sooner or later the numbers of outside helpers will decline, although in August when we saw him he did not have enough orphanages to fulfill the requests of foreign groups to be assigned entire buildings in which to work. He was working with other officials to persuade foreign companies to open factories in Romania to manufacture IUDs and disposable needles. Marinescu was acutely aware that economic development will ultimately determine the level of health care, and that unless Romania begins to produce a variety of salable goods, it will never be able to sustain an adequate system.

It is unclear whether a government that last June summoned miners not only to violently attack demonstrations but to terrorize the population generally will be able to deal with the problems we have described. Even the limited progress that we observed may be transitory, and the new heads of the medical institutes and ministries who are committed to change may be replaced as quickly as they arrived.

Indeed, it is difficult to be very optimistic about the future when the fragility of the Romanian social as well as political order is so apparent. To give adequate health care and child care will require not only substantial resources and efficient monitoring procedures, but a degree of professional integrity and discipline in the medical profesion that is still notably absent. It was far easier for Ceausescu to degrade the medical profession than it will be for a new government to rebuild it. And without both a sense of mutual responsibility and discipline, and a system for collegial oversight and censure, physicians may well continue their peculiar and dangerous practices. The Romanian experience suggests that medicine, too, is a liberal discipline and that it depends as much as any other, if not more so, on freedom of expression and respect for the people it treats.