In 1986, after a series of operations, 3-year-old Zack Fried of Los Angeles began recovering from lung disease and a hole in his diaphragm. "He was truly a triumph of modern medicine," his mother, Anna Belle Kaufman, told a House subcommittee Wednesday.
Then, shortly before Zack's 4th birthday, doctors diagnosed him as having AIDS, most likely contracted from a blood transfusion. Kaufman found the medical Establishment unprepared to cope with her child's new problems.
"I found there was little out there for adult AIDS patients," she said, "and there was nothing for children--no drugs, no testing." Zack died in 1987.
Pediatricians told the panel--the House Government Operations subcommittee on human resources--that children with AIDS need special treatment. They urged Congress to increase the availability of special drugs for children and to provide financial aid for research and support services for children.
Number of Patients Estimated
By 1991, the experts testified, an estimated 3,000 children will have AIDS and as many as 20,000 will carry the AIDS virus and almost certainly develop the disease.
"In the face of this epidemic, we are strapped for resources, are short-staffed (and) face enormous provider burnout," said Dr. Joanne E. Lukomnik, director of a Bronx, N.Y., care center affiliated with the Albert Einstein College of Medicine.
"Children are not small adults," said Dr. Gwendolyn B. Scott of the Pediatric AIDS Coalition. "The disease is different in children."
Scott said children contract AIDS mostly through contact with their parents and suffer different symptoms, such as central nervous system disorders and a lung condition that is uncommon in adults.
Diagnosing AIDS in children is more difficult than in adults because newborn children receive a passive antibody from an infected mother even if they do not receive the virus itself. The normal test for AIDS is a test for the antibody, which can persist for months even if the virus is not present.
Drug treatment for children has lagged behind that for adults, witnesses testified Wednesday, and children often receive drugs after they have been tested only on adults. Experts called for dual testing of drugs on adults and children.
Dr. Mary Boland, director of the AIDS program at Children's Hospital of New Jersey, said many children with AIDS become wards of welfare agencies once their mothers die of AIDS. Bureaucratic delays then sometimes interfere with treatment, she said.
"We must make sure these children are not denied access to appropriate therapy because they lack a biological parent or guardian," Boland said.
Other witnesses said parents of children with AIDS need to be taught to adhere to rigorous medication schedules and keep frequent medical appointments. Kaufman said she found it difficult to get social services, such as counseling, because most programs were geared toward adults with AIDS.
"When I tried to get some help for myself, to cope with this ghastly situation, there was nothing," she said.
Rep. Ted Weiss (D-N.Y.), chairman of the subcommittee, supported the view that more money is needed for children with AIDS. Federal health officials are scheduled to appear before the subcommittee today.