AIDS: The Battle Rages On
The late 1980s were not good times for New York’s Harlem or the other disadvantaged urban communities in the United States. Two linked epidemics, one posed by the human immunodeficiency virus/ acquired immunodeficiency syndrome (HIV/ AIDS) and the other by crack/cocaine, had shredded the already tattered social structure of these communities and threatened to destroy a generation of children.
I date the beginning of the AIDS epidemic to a telephone conversation in the early 1980s. The director of medicine at the hospital in Harlem where I was director of pediatrics asked me: “Did you see the article in last week’s New England Journal of Medicine about a mysterious disease causing repeated infections and rare malignancies in homosexuals? I think we have some drug-abusing patients with the same constellation of symptoms.” At the time I thought, “Well, whatever it is, I don’t have to worry, because it’s not in children.” So much for my perspicacity, for within months we began to find infants and children with unexplained growth failure and repeated serious infections, sometimes fatal, that usually were very rare. In 1982, my hospital admitted one child with what was eventually labeled AIDS. In 1987, that number had increased to 44, and by 1989 the number of children hospitalized with HIV/AIDS infections, often for extended periods, had reached 134.
During that period, the crack/cocaine problem was, in many ways, even more devastating and difficult for the health care system and, more importantly, for Harlem families and children.
On the front lines
Several years ago, I retired and have retreated from the front lines to the sidelines. As I left Harlem, the crack/cocaine epidemic had largely subsided and the HIV epidemic had changed, in large measure as a result of scientific research.
When the first HIV/AIDS-infected infants and children appeared, no one knew why these infants and their mothers had such deranged immune systems. So while our brethren at the National Institutes of Health and the Pasteur Institute labored to find the cause of this new disease, we on the front lines could do only what we already knew how to do: treat the infections secondary to their immunodeficiency. The cost of providing these children and their parents with even this modest medical care placed an almost impossible burden on urban city hospitals.
The identification of a virus as the cause and the development of an antibody to detect the disease made the development of clinical research units imperative. Many of the adults infected with HIV/AIDS were middle-class homosexual men who had the organizational skills and influence required to demand and finally get federal funding for AIDS research. In contrast, most HIV-infected children were, and still are, from minority families that often are disorganized and have little political power or influence. Although the battle for federal funding for AIDS research in adults was difficult, it was even more challenging to convince funding agencies to pay attention to the problems of these disenfranchised families and children.
Finally, collaborative units were established to conduct pediatric AIDS clinical research. However, children infected with HIV/AIDS were not found in the usual academic research centers, but rather in the nation’s scruffy, always embattled city and county hospitals. Thus, pediatric units in these hospitals of last resort scrambled for funds from the National Institutes of Health to establish the clinical research units that provided and continue to provide much of the clinical data for pediatric AIDS research.
In the early days of our work, when we could not prevent underlying viral infection, we wondered if we could prevent the often-lethal secondary infections. Two early trials provided the first successes in the treatment of children with AIDS.
The logic of the first trials was rather simple: Because the virus attacks the immune system and gamma globulin is an important component of the immune system, can we prevent secondary infections by giving infected children immune gamma globulin? Controlled clinical trial data from these collaborating research centers showed that monthly intravenous gamma globulin could prevent serious secondary bacterial infections in some HIV-infected children. We had taken a first step in prevention.
For the second trial, which was based on experience in treating immunocompromised cancer patients, it seemed reasonable to try to find out whether primary prophylaxis might prevent Pneumocystis carinii pneumonia, a leading cause of early death in HIV-infected infants. Analysis of data from a multicenter longitudinal study of infected infants in New York City showed that prophylaxis with a rather common sulfa drug did prevent this complication of HIV infection.
But we had no treatment for the virus itself until a 1987 clinical trial of the drug AZT showed success in decreasing mortality and the incidence of opportunistic infections in HIV-infected adults. Perhaps because of the lag in the development of clinical pediatric HIV research units, not until 1991 did pediatricians have evidence of the benefit of AZT therapy for HIV-infected children. Since then, numerous multicenter controlled drug studies of new classes of retroviral drugs have resulted in increased longevity and improved quality of life for HIV-infected adults and children alike.
Finally, in 1994, a multicenter clinical trial showed that AZT given to infected women during pregnancy and labor and to the infant at birth reduced the transmission of the virus from mother to infant by more than 60 percent. This finding undoubtedly represents one of the more important scientific advances in the battle against this virus. The U.S. Centers for Disease Control and Prevention recently estimated that the rate of HIV infection in infants in the United States has declined by 80 percent during the past 10 years.
The earlier identification of HIV-infected women, the use of AZT during pregnancy to prevent newborn infection, the use of prophylaxis to decrease the rate of bacterial and Pneumocystis carinii infections, and the development of more effective antiretroviral medications–all of these scientific advances have had a substantial effect on the lives of HIV-infected families and children. For example, in New York City the median age of HIV-infected children increased from 3 years in the 19891991 period to 6 years in the 19951998 period.
Thus, the country is now left with a cohort of HIV-infected children and adolescents with chronic, serious, but often manageable disease. Unfortunately, many of these children are orphans because their parents died of AIDS. Many have such serious mental and developmental problems that their ability ever to live independently is questionable. The challenge of caring for these child survivors of the AIDS epidemic may prove more difficult and complicated than the scientific research that has improved and prolonged their lives.
Clearly, we have made substantial, if limited, scientific progress in the care and treatment of HIV disease. But only those in the more affluent areas of this world can benefit from this progress. Meanwhile, the virus rages virtually unchecked in the developing world. The question now is whether the United States and other developed countries can export this scientific progress to those countries. If we cannot or do not take this next step, then the current debate about weapons of mass destruction will pale in comparison to the catastrophe of the worldwide HIV epidemic.
Margaret C. Heagarty is a former professor of pediatrics at Columbia University’s College of Physicians and Surgeons.