Children and AIDS: Drug Tests Raise Hope And Ethical Concerns
By GINA KOLATA
Published: May 24, 1988
EARLY studies of an AIDS drug in children have recently shown promising results, indicating that the lives of many babies with AIDS can be prolonged and improved.
Now, as the trials of the drug azidothymidine, or AZT, in children are expanded and tests of other drugs are begun, some researchers are contemplating a major new step: They want to treat babies who may carry the AIDS virus but are not yet ill, in the hope of staving off acquired immune deficiency syndrome.
Several investigators said they want to test treatments in newborn babies of mothers who are known to carry the AIDS virus. About 40 percent of these babies have acquired the virus in the womb or at birth. The researchers believe that drugs may be most effective, suppressing the virus or possibly even eliminating it from the body, if they are given to babies as soon as possible.
Some researchers are even thinking about treating the fetuses of infected mothers, if the drugs prove safe to take during pregnancy. More Ill Children
According to the Centers for Disease Control, 981 children had developed AIDS as of May 16. Dr. Margaret Oxtoby of the C.D.C. said the agency had not been able to estimate how many children are infected, but not ill, but that the number was probably more than 5,000. With more women than ever, mainly drug abusers or the sex partners of drug abusers, infected with the virus, the number of infected infants is presumably rising too. Based on 1987 surveys of women giving birth, the New York City Department of Health has estimated that 1,000 children will be born with the virus in the city in 1988.
The ambitious plans to treat new babies of virus-carrying mothers raises difficult ethical questions. Since less than half of the infants will actually become infected, is it right to treat all of them with powerful drugs to potentially benefit some?
In the first 15 months of life, there is no sure way to tell which infants are actually infected, but these experts believe that, over all, the benefits to those babies that are virus carriers would more than outweigh any risks to the babies who are not. The drug is believed to block reproduction by the AIDS virus, but it can suppress bone marrow cells, causing anemia. When it is possible to determine whether the infants are carrying the virus treatement would be discontinued for those who do not need it.
Treating babies at birth or in the womb will also raise such questions as which women should be tested, and what should they be advised if they are infected with the virus? Efforts to encourage voluntary testing for pregnant women in communities where AIDS is prevalent, mainly drug-infested inner city areas, have had only limited success.
The anticipated studies ''involve serious medical and ethical considerations,'' said Dr. Edward Connor of Children's Hospital of New Jersey in Newark. ''But we have a disease with an effective mortality rate of 100 percent, and it is logical that the best time to treat is right after birth.'' Encouraging AZT Results
The most promising news, researchers say, is that two initial tests of AZT in children have been unexpectedly successful. The drug, which has been shown to prolong the lives of adults with AIDS, appears to be even more effective in children, and it causes serious side effects less often.
One of the initial studies, conducted at the National Cancer Institute, the University of Miami and Duke University, involved 36 children. The results ''look good, but 36 kids is not a large number,'' said Dr. Catherine Wilfret of Duke.
The children in the study all had AIDS and ranged in age from 5 months to 12 years; only one had to discontinue the drug because of side effects. In adults who are equally ill, only about half can tolerate the drug.
The other study, conducted by Dr. Philp Pizzo of the National Cancer Institute, involved different drug doses. Dr. Pizzo has not yet announced his results, but he said that they were very encouraging.
Also clearly encouraging, according to Dr. Ari Rubinstein of Albert Einstein College of Medicine in the Bronx, is the finding that AZT in children ''seems to make a dramatic change,'' even reversing the neurological problems that often go along with the disease. Neurological Problems Vary
Dr. Connor said children with AIDS frequently have delays in learning to sit up, crawl and walk. They may have difficulty learning to speak and some are mentally retarded. The neurological problems ''vary tremendously from very minor to very severe,'' he said.
Researchers are still plagued by the problem of determining whether a baby who is born of an infected mother but appears well is carrying the virus. Infected adults make antibodies to the virus that can be detected in their blood. A pregnant woman who is infected always passes AIDS antibodies to her fetus, but she passes the actual virus roughly 40 percent of the time. Not until the babies are about 15 months old do they start making their own antibodies if the virus is present.
Investigators have tried, with limited success, to identify infected babies by other means. They have asked, for example, whether sicker women are more likely to pass the virus on. But ''there is nothing in the mother that predicts,'' Dr. Wilfret said. They also have tried to isolate the virus directly from babies' blood, but often cannot detect it, Dr. Wilfret said.
Many researchers said they would like to try giving antiviral drugs to pregnant women who are known to carry the AIDS virus but who choose not to have abortions. The researchers hope this would protect the fetuses from being infected.
Dr. Sandra Nusinoff-Lehrman, associate head of the infectious diseases department at the Burroughs Wellcome Company, the maker of AZT, said that she and her colleagues had considered giving the drug to pregnant women. But she noted that ''treating pregnant women with any drug is something one doesn't undertake lightly.''
Burroughs Wellcome is still testing AZT in animals to see if it produces birth defects, a study that ''takes a long time; you have to treat many generations,'' Dr. Lehrman said. So far there has been no evidence that the drug causes defects, she said. Other Studies Planned
Studies are being planned to test two other antiviral drugs, acyclovir and ribivarin, in children with AIDS, said Dr. Samuel Katz of the Duke Medical School. Another study will test whether intravenous antibody preparations, called intravenous gamma globulin, can prevent the bacterial infections that plague children with AIDS.
In the meantime, Dr. Katz said, ''there's a lot you can do.'' If doctors know that a mother is infected with the virus, they can begin at birth measures to deal with the possibility that the baby might be infected too.
''You can follow the baby with a very different attitude,'' he said. ''You can intervene with antibiotics, you can prevent a lot of things.
''It's the same old hope,'' he continued. ''This is such a dynamic and rapidly changing field. If you can keep the child going, who knows what new treatments may be around in the next two years.''
Photo of Dr. Edward Connor of Children's Hospital, Newark, examing a child with AIDS. (NYT/Keith Meyers)