School Officials Battle Ignorance and Fear In Effort To Deal With Students With AIDS
Two news photographs of the opening day of school in towns called Arcadia graphically illustrate the uncertainties facing educators nationwide, as the number of children afflicted with AIDS, or carrying the virus that causes it, continues to grow.
In the picture from Arcadia, Fla., the tension is almost palpable. A defiant Clifford Ray leads his three sons to class as police guards follow closely behind.
Days later, the family's home would be destroyed by a fire termed "suspicious." And the Rays, who fought for a year to win the right to have their sons attend a local school, would pack up and leave town.
But the picture from Arcadia, Ill., is different. In it, Ryan White sits peacefully in a full classroom at the Hamilton Heights High School. He is smiling. And so are his classmates.
Deciding which Arcadia to emulate--the informed and welcoming Illinois model, or the polarized and confrontational Florida town--will be an increasingly commonplace dilemma for communities, according to statistics.
A new National Education Association survey puts the number of school-age children now afflicted with AIDS at 684. According to the federal Centers for Disease Control in Atlanta, a total of 1,240 people below the age of 19 have the disease. And in less than four years, the agency predicts, that number will grow to at least 3,000.
Not included in the estimates are the much larger group of children, who, like the Ray brothers, test positive for the AIDS virus but show no signs of the disease.
Medical experts say that children with AIDS fall into three groups: those who were born with the disease, having contracted it from infected mothers; hemophiliacs, like Ryan White and the Ray boys, who become infected when they are given a blood transfusion or clotting agent made from contaminated blood supplies; and teen-agers who contract the disease by taking drugs with dirty hypodermic needles or having sex with an AIDS carrier.
Babies born with AIDS make up what is by far the largest of the three groups. While most such infants die before they are old enough to start school, the number living longer--up to nine years in some reported cases--is believed to be growing. And a sizeable number of these youngest AIDS carriers are now reaching school age.
The school-going AIDS population is also likely to increase, doctors say, because of recent advances in the treatment of the disease.
Azidothymidine, or AZT, an antiviral drug now being used to treat adults with the disease, may be the most promising of the new therapies. While it is no cure for AIDS, AZT is thought to inhibit its progression in some people.
Scientists do not yet know, however, if the drug will prolong the lives of children with AIDS. But they expect that AZT will enhance the quality of life for some young AIDS patients--possibly enabling them to feel well enough to go to school, according to Dr. Shelby Josephs, who treats children with the disease at the Children's Hospital National Medical Center in Washington.
Controlled studies on the drug's effects in children are now being conducted, he said.
Despite the public fears that surround school-age AIDS victims, medical experts interviewed last week said they continued to favor allowing such children to attend classes with their peers.
"The idea is to live as close to normal a life as possible," Dr. Josephs said. "It's not to live in a plastic box for as long as possible."
Added Dr. Donald Francis, a CDC epidemiologist who is working on assignment with the California AIDS office: "For my two children--that I love tremendously--I would not have any fear of their being infected by being in a classroom with AIDS children."
CDC guidelines issued in September 1985 recommend that schools consider each AIDS case separately in determining whether or not to allow the patient to attend regular classes. But the document also adds that the benefits of attending school for the AIDS child outweigh the "apparent nonexistent" risk to other children. The agency advises making exceptions for children who bite, lick, have open wounds, or may not be toilet-trained.
"We still haven't ever seen a case of transmission by casual contact in a family setting," said Dr. Martha Rogers, chief of family and pediatric studies in the CDC's AIDS program.
Thirty-nine state boards of education have adopted guidelines similar to the CDC's for their schools.
State and federal courts also have concurred with the CDC, opting in nearly every decision involving a school-age victim to allow the AIDS child to attend school.
Even the National PTA, in an effort to defuse some of the controversy over AIDS children, this month reiterated its longstanding opposition to "social displays seeking to segregate, persecute, or ban children with AIDS from school."
Survey Finds Misinformation
"Why is it, then, that every year we hear the stories of children who endure the same agony and yet wind up going to school?" said Marsha Liss, a professor of psychology at California State University in San Bernardino.
In an attempt to answer that question, Ms. Liss has surveyed school principals in 47 California districts, finding that, while most are knowledgeable about the disease, there are alarming gaps in that knowledge.
One-third of the principals incorrectly thought that AIDS could be contracted through a Band-Aid, she said. Among the other wrong answers given were these: 13 percent said AIDS could be transmitted by sitting on a toilet seat, and 17 percent said that because blood supplies are now being screened for contamination they would see fewer student cases of the disease.
In all, 90 percent of the principals answered only 7 of 14 factual questions correctly, Ms. Liss said.
But she also found that the principals who displayed the most open attitudes towards AIDS children and knew the most about the disease came from school districts that had already embarked on "aggressive" efforts to teach children and staff about AIDS.
"Education is the key to overcoming ignorance about the disease," she said.
Education Strategy Used
That was the strategy adopted in rural Blaine County, Idaho, last year when Carter Smith asked to attend the Ketchum Elementary School.
Two weeks after the 12-year-old AIDS victim made his request, school officials began holding inservice workshops on the disease for every teacher. And David Noonan, the county's superintendent, started making speeches about the disease to groups ranging from parents to custodians.
In accordance with a policy drawn up months earlier by the local school board, Carter Smith was allowed to go to school last April.
"Of the 350 students in that school, we only had one child change schools as a result of the AIDS enrollment," Mr. Noonan said. "It never reached the point of panic or hysteria."
In Indiana, Ryan White's new principal, Tony Cook, also credited education with making the 15-year-old AIDS victim's first day of school peaceful. Eighth-graders in that community have textbooks devoted to the disease and the school offers a course called "Sexually Transmitted Diseases" to freshmen and sophomores.
The 'Relative Risk'
In educating communities, Dr. Josephs said, the idea is to impress upon parents the concept of "relative risk."
"I can't guarantee you won't be hit by a drunk driver, but that doesn't mean that most of us won't drive," he said.
But school administrators who have faced frightened parents say that guarantees are often what the families want to hear.
"They're saying, 'Can you promise me that my child won't catch AIDS?"' said Glenn Graber, a philosophy professor who answered parents' questions during a call-in radio show on the disease in Lake City, Tenn. Some parents in that community boycotted a school this month because a child who tested positive for the virus had been allowed to attend.
"Of course, science can't give them guarantees," Mr. Graber said.
The implications posed by growth in the school-age AIDS population may be even greater for special educators. Medical experts say many children born with AIDS suffer cognitive deficits--some apparently due to the disease, some due to environmental factors.
They may be slow to learn to talk or walk, for example, and may suffer from spasticity in their muscles.
"It's at that point that we do want to talk about special education--not because they have AIDS, but because they have neurological impairments," said Ms. Liss of California State University.
Who Has a Right To Know?
But ultimately, school officials must also decide the delicate question of who is entitled to know if a child has AIDS. The identity of most AIDS children in schools, unlike the cases that have attracted national attention this fall, is a well-guarded secret.
In Idaho, Mr. Noonan said, school officials chose to reveal Carter Smith's disease to his teacher but not to his classmates.
"Just like you would not tell a classmate if a child across the aisle had a learning disability, or that the child in the back row was an epileptic," he said.
The boy's identity and his disease became common knowledge only after his death this summer.
But parents in other communities have demanded to know which students carry the AIDS virus and what schools they attend.
"The parents, faculty, and students need to know if someone in their immediate environment is carrying a communicable disease," a concerned mother in Northglenn, Colo., told reporters there during a recent AIDS controversy.
In looking back at his own experience in dealing with the AIDS problem, Mr. Noonan of Idaho said that the confidentiality issue was one of the most difficult he has faced.
"Ultimately," he concluded, "you just simply have to call upon a degree of courage to deal with it."