Romania, A State of Shock, Babies with AIDS in post-Ceausescu Romania

Romania, A State of Shock, Babies with AIDS in post-Ceausescu Romania

by Darrell L. Paster

ince 1969, Darrell L. Paster has been concerned with health issues involving poor people. He helped set up the Appalachian Health Project which established and ran seven health care clinics in remote areas from Tennessee to West Virginia. After that, Paster worked for a labor union, organizing hospital and public service workers in Tennessee, Mississippi and Alabama. He went to law school in 1972, and for 12 years was in criminal law, first with the Civil Division of the New York City Legal Aid Society and then with the Federal Defender Services of Legal Aid. He is currently working for the Criminal Division, Legal Aid Society, in New York City.

The following are recollections of his recent visit to Romania.

I had heard about the problem of pediatric AIDS in Romania from a friend, Carolyn Burr, a nurse who works with a pediatric AIDS program. The National Pediatric AIDS Resource Center gave me more information about the situation and introduced me to the American Romanian Humanitarian Society, a group dedicated to improving relationships between the U.S. and Romania. They have taken on the problem of children with AIDS in Romania as their first project. After meeting with them, I made calls to groups like the World Health Organization (WHO) and the Centers for Disease Control.

The group I traveled to Romania with found it impossible to find a conduit to dispense aid in Romania. Nor did we know exactly what to expect. We had also heard wildly different reports on the extent of the AIDS problem in Romania. Rumors were that a half to two-thirds of the children in the orphanages, and what are called the dysentrophic centers, had HIV infection. (Romanians describe dysentrophy as what we call failure to thrive. Dysentrophic centers are homes for underdeveloped infants.)

Speaking with WHO, we were advised that people in Romania were also trying to determine the extent of the problem. It was finally decided that the best way to find out what was going on was to go and see for ourselves.

We set four objectives. The first was to determine the breadth of the problem in terms of how many people — especially children—were ill and what stage of the disease they were in. We also wanted to investigate the organizations that provide aid.

Health care in Romania is a governmental function, provided by the Ministry of Health and its various arms, and the Romanians we were working with were extremely skeptical of working with them. There is also rampant corruption in Romania — not that Romanians are any more dishonest or criminal than any other people — but their currency has been so debased and their economic system so totally destroyed that it’s simply a matter of survival to participate in the second economy, the black market.

The third objective was to see if there were connections that we could draw between Romanian and American institutions. Because of my friendship with people at Children’s Hospital in New Jersey, I was aware that medical people had developed extremely innovative ways for dealing with children with AIDS. In Romania we found that over 90 percent of the children diagnosed with AIDS were in the hospital, or in an orphanage or dysentrophic center. In New Jersey, 10 percent of the children were hospitalized and 90 percent were at home.

Finally, we thought that to the extent that we could, we would seek to publicize the problem in order to try to obtain help for those who were suffering from the disease.

My first visit to a hospital left me in a state of shock. We went to Victor Babes Hospital, which is one of two hospitals for contagious diseases in Bucharest. There was a wall about eight feet high around the compound. The hospital is made up of numerous buildings and a wooded area, and the wall is topped with barbed wire. The second and third floor windows have chain links over them.

There was a guard at the gate, and they had to open a steel gate for your car to get in. There was absolutely no one walking around the grounds. I’ve been assured by others who have visited less developed countries that this is common for infectious disease hospitals, but every American or Western European medical person I spoke with agreed that these kinds of precautions are totally unnecessary for the management of such contagious diseases.

When we met our first doctor in the hospital, I had a second case of shock. He was a heavy-set, unshaved man, wearing a dirty blue bathrobe, smoking a cigarette.

We learned that the medical establishment in Romania had been essentially isolated from the rest of the world since shortly after former President Nicolae Ceausescu took power. We were told he had contempt for doctors. That contempt — the conscious starving of the medical system — was obvious. Doctors earned approximately 34,000 liu a month. At the official rate, that’s not much, and at the black market rate it was $30-40. There are no Western medical journals. The laboratories, the hospitals that we visited, were clean and tidy, but primitive. That’s the only way to describe it.

My belief, and I’m no expert, is that we’re going to see a significant number of AIDS deaths among health care workers in Romania. We were in the blood lab in Colantina Hospital and watched while they were conducting blood screening on 60 samples from an orphanage. These were put into their test capsules by a mechanical pipette. For other samples, they use what are called mouth pipettes. Workers literally suck the blood into the pipette. The possibility of contamination in such a situation is very high. When there’s blood coming from an orphanage or hospital they assume that there may be a problem with AIDS; for the rest of the blood they just assume there’s no problem with contamination, an extremely dangerous assumption. These kinds of procedures would never be tolerated in the United States.

We subsequently met a pediatrician, Marianna Mardarescu, who took us on a tour of the AIDS laboratory and the AIDS wards where we saw the children. She told us that she was responsible for having at least six children xrayed every day. In the course of that she had to stand in the room and hold the children. I asked her if she stood behind a lead shield. She said no. Did she have a lead apron? She said no. It turns out she doesn’t even have an xray machine. She has a fluoroscope, and so she has to read the x-ray while it’s on. Apparently she’s being irradiated six times a day. She was almost in tears as she told us. I’m sure she realizes the danger to her own health.

We got a lot of contradictory information, and I think it reflects the fact that things are changing very quickly in Romania. One of the feelings you have is that there’s a breakdown of governmental control on all levels. The traffic officers don’t direct traffic; they stand there and watch the chaos.

The country is percolating with political activity. There are demonstrations on the street every day.Things change moment by moment. We were able to go up to a country palace of the kings, which had been one of Ceausescu’s hideaways. It was literally opened that morning, when people came up to the soldiers guarding it and said they wanted to see it. Why can’t we see it with Ceausescu gone, they asked. The soldiers had no answer, so the people walked in.

You hear the same things over again about Romania. One is that the most important thing that can be done for the country is to get blood screening equipment. There is some screening in Bucharest and in another city, Costansa. After that, there is no systematic screening. It is safe to assume that HIV infection is continuing to spread there, largely to the adult community, via the transfusion network.

Secondly, the nursing situation in Romania is so drastically different from our own as to seriously detract from the quality of the care that’s given. The problem of nurse’s training is very serious. There are two levels of nurses. They have one category called Medical Assistant, where the person has six months to a year of education beyond high school and is then put on the wards as a full nurse. Then there are the infermerias, the equivalent of our licensed practical nurses, who have no medical training whatsoever. They’re the maids, the cleaners, but also care providers. A Scottish nurse visiting Romania noted that the nurses themselves have a very restrictive view of their role, saying that their tasks are limited to things such as injections and the dispensing of medication. Their role does not include comforting the ill.

One of the main problems we saw and heard was that, by and large, no one touched, or picked up, the children with AIDS. You would see three or four children in every ward rocking themselves. This is a mode of behavior that children who don’t have proper stimulation go through. I was told that this is a form of self-stimulation that infants engage in when they are not otherwise held or touched. It is a form of dealing with deprivation of contact.

One of the things the outsiders were trying to do was to dispel the notion that AIDS could be passed by picking up these children. Medical personnel have very little knowledge about AIDS. Among the general population there’s no knowledge. I took this up with Dr. Apetrei, Deputy Minister of Health in charge of the Department of Preventive Medicine, who is responsible for Romania’s AIDS program. They have, in the planning stages, a public health information program which they are not commencing because they know it will trigger a widespread demand, if not panic, for AIDS tests, and they have no testing ability. They are awaiting the arrival of testing equipment before beginning. However, there’s an underground whispering campaign, which I didn’t detect through discussions with health personnel. When I stayed with families who were in no way connected with the health organization and establishment, people had absolutely no information. I was asked if AIDS could be gotten off a toilet seat, washing one’s hands, using towels, etc. There’s virtually no information available to the common person. We found only one booklet that’s been produced, which has been universally condemned as being aimed at the upper levels of the medical profession and as equating AIDS with diseases like hepatitis.

Romania’s number one epidemic is not AIDS, it’s hepatitis. The interesting and nice thing is that the same machines that do AIDS testing also screen for hepatitis. Getting some equipment in place would solve, or help solve, these major problems.

The third major problem, the problem that underlies it all, however, is malnutrition. One of the doctors I spoke with said that the AIDS epidemic in Romania is a political disease. Ceausescu was trying to increase the population of his country by 10 million people. He did this through forced pregnancies. Not only could you not have an abortion, there were literally no condoms or other types of birth control available. Under his regime, birth control was illegal. Not because of any religious reason — Ceausescu was an atheist — it was his megalomaniacal desire to raise the population of his country.

The way it worked was that doctors, who are government employees, would be assigned to a woman and monitor her, conducting pelvic examinations every quarter to determine pregnancy. Once a pregnancy was noted, the doctor became personally accountable for the fetus and for the birth of the child. This led the doctors to be conservative in their medical treatment of pregnant women and infants. The death of an infant, I was told, had catastrophic effects on a doctor’s career. A doctor in Bucharest would be sent to the countryside, to one of the poorer places to work, if she or he lost a child.

What was also happening was that the older infants who were two, three, four, five months old, who were suffering failure to thrive, were receiving what they call micro-transfusions, and micro is purely a euphemism. I was told that it was up to half a unit of blood which is about 225 milliliters. Given the lack of sterilized equipment, the lack of needles, it was not uncommon for a bottle to be opened, stuck in the arm of one child, and without further ado, stuck in the arm of another child. Unwittingly, the doctors who were trying to save children were putting them in harm’s way. In the dysentrophic centers they were transfused and often infected with the HIV virus.

It is beyond argument that the AIDS epidemic among children in Romania is spread horizontally, that is, from one child to another, rather than vertically, as it is in the United States, from mother to child. Most of the HIV-positive children in the U.S. are the children of mothers who had previously been infected through IV drug use or sexual transmission. In Romania, there’s almost none of that. We were told by both inside and outside observers that IV drug use and sexual transmission is minimal.

The other practice that led to the spread of the disease is the lack of disposable needles. And the overcrowdedness — as few as three nurses for 60 beds was not uncommon during the day, two in the evening and one at night. These were in hospitals. The orphanages were less well staffed, and the dysentrophic centers, we were told, were the worst.

Take a nurse giving vitamin shots to infants. It is not uncommon for her to load up a syringe with enough for four children, and go down the row and inject them all. AIDS, hepatitis, other diseases, would be passed that way.

The children in hospitals, orphanages, dysentrophic centers are largely abandoned. In Romania, at the current time, “orphan” is a euphemism for an abandoned child. The director of Orphanage No. 5 in Bucharest cited a number of reasons for the abandonment of children by their families.

First and foremost, the parents just couldn’t feed the children. The children they already had strained the family’s resources; these were children the mother was compelled to have by state policy, and there was just no way the parents could support them.

I asked about any system of foster care and was told that people could not afford to take in another child. It is a society much poorer than our own, where every child is something of a liability to be fed, clothed, etc.

At this moment, there are still almost no contraceptives available. We were meeting with the head of Colantina Hospital who talked about the incredible need for contraception in Romania. He said that he had been visited by many international delegations. Following a visit by West Germans, he received two large cartons of condoms that had been contributed to Romania from West Germany. He said that they were opened on a table in his office but, that before the day was out, the nurses had taken them all. So one or two cartons is not going to do the trick. As far as we know, from what we were told by all the people we met with, all forms of contraception are now legal. The problem is availability.

Everywhere we went in Bucharest there were lines for food. The first discussion we had with people we met was the worthlessness of the currency. The second discussion was where to find food. I went in many, many stores as we walked around Bucharest. There were old canned goods, dusty jars of tomatoes and green beans. There are no fresh vegetables except radishes and onions. You would call a restaurant before you went, not for reservations but to find out if they were serving. And there were incredible lines.

Then, things would appear miraculously. For some reason, the week before I got there eggs appeared. We went to the country on Sunday and people were driving back with eggs on the back shelves of their cars. The only meat we saw was sausage, salted pork, ham, things like that. There was lots of cabbage. And everyone smokes.

Over and over again, every time we talked about the government providing for itself, we were answered with the same thing: Ceausescu’s policy had been to export everything from Romania and to import nothing. As a result, the country has a worthless currency. Apparently it has no form of debt to speak of, but there’s nothing there either. When the government goes about buying things, such as the blood laboratories it recently purchased, it has to find hard currency or negotiate to purchase items it wants. The problem with international trade is with the currency. That problem is going to have to be addressed before the other problems are resolved.

We did not discuss the availability of abortion per se, which is now legal. The quality of medical care in general is so starved, to discuss the availability of abortion is really to discuss the availability of health care. If a woman can’t see an obstetrician or gynecologist for any reason, saying that abortion is legal is a false promise, because there’s nobody to do it.

Maternal and infant mortality rates in Romania are the highest in Europe. We were told that the official figures on infant mortality in Romania are 23-25 per 1000 live births. One American investigator told us a live birth is when the child has survived three months. Therefore, if the child died in the first three months, it was called a miscarriage, not infant mortality, because the child was never born. This investigator, who was also a medical doctor, estimated the true infant mortality rate might be as high as 80 children per 1000, which puts it among the highest in the world. When you consider that our own figures are in the teens, the best countries of Western Europe are below 10, that infant mortality is often an indicator of a country’s public health, these figures are very telling. WHO attributed the high maternal mortality figures to the high number of illegal abortions. We’re not certain, but apparently, the performance of an abortion by a medical doctor in Romania under Ceausescu was such a dangerous thing that it virtually wasn’t done by licensed doctors. There was no reward for the doctor and the risks were high if she or he were caught.

The AIDS epidemic is a product of a personal dictatorship gone mad. Clearly, compulsory childbearing is merely an extreme culmination of state intervention in people’s private procreative affairs. Under the Romanian system, women didn’t have any choice in their personal lives; they were compelled to behave in a particular manner. Here in this country the struggle is on the other end — to protect choice — but you can see how a restriction of one leads to the other. It’s a slippery slope between restricting personal choice and compulsion.