Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: TUESDAY, June 22, 1993 TAG: 9306220366
SECTION: NATIONAL/INTERNATIONAL PAGE: A-1 EDITION: METRO
SOURCE: JON HILKEVITCH CHICAGO TRIBUNE
DATELINE: CHICAGO LENGTH: Long
So far an explanation has eluded the 11-year-old girl and her family, as well as the Cook County and state health departments and the national Centers for Disease Control and Prevention.
Still, the Morton Grove, Ill., child, who is to travel to the National Cancer Institute in Bethesda, Md., to begin an experimental therapy with the drug rifabutin, is waiting for an answer.
"It's not my fault I have AIDS, but I've got it anyway," Whitney said at a recent Daley Plaza rally organized by a support group for children who have AIDS and their families. "I don't want other kids to suffer like I have."
The vast majority of the 290,000 documented AIDS cases in the United States fit into classifications that explain how the virus was transmitted - through blood, sex, needles or birth. But in the brief history of the epidemic, there have been 90 American children who fall into none of the risk categories yet contracted the disease.
Whitney is one.
Her parents, Bruce and Anita Williams, say they have listened to many theories, but none is particularly revealing. "Whitney has never had a blood transfusion and never, to our knowledge, even been around anyone with AIDS," said Anita Williams, a nurse's aide.
Neither parent nor any of their four other children, all younger than 8, has tested positive for the AIDS virus.
"There have been ideas put forth by some doctors and attorneys," said Bruce Williams, an insurance salesman, "ranging from contaminated instruments used in piercing Whitney's ears to an oral polio vaccine made with . . . monkey cells that were contaminated with HIV."
Although the Williamses are working with the Medical Legal Foundation in San Francisco to pursue a possible link to the vaccine, the U.S. Department of Health and Human Services has "totally rejected the unsubstantiated hypothesis on scientific grounds," a spokeswoman said.
Bruce Williams can only ask: "Why is this happening to us? We may not win the Good Housekeeping seal, but we are a good family."
Sometimes the Williamses wonder if Whitney may have been infected by a health-care worker, perhaps at age 2, when she had four teeth extracted. They talk about Kimberly Bergalis, a Florida woman who contracted AIDS from her dentist.
Bergalis, who died in 1991 after appealing to Congress for strict regulation of HIV-infected health care workers, was one of six people who contracted the AIDS virus from Florida dentist Dr. David Acer, who died of the disease.
The highly publicized "Florida cluster" is the only known case in which the virus was transmitted from a health-care worker to a patient, according to the Centers for Disease Control, although how Acer infected his patients has not been pinpointed.
The American Medical Association and the National Institutes of Health have stated there is an extremely small risk - virtually nil - of contracting the AIDS virus in a so-called invasive procedure performed by an infected doctor or dentist who follows standard infection-control practices. Invasive procedures involve the possibility of blood; they range from shots to surgery.
Whitney, a friendly child, remembers like yesterday the March day last year when her mother told her she had been diagnosed with AIDS.
"She came into the doctor's room crying and asked me if I knew about AIDS," Whitney said. "I told her yes, we learned about it in school. Then I asked if I was going to heaven. She said, `Of course you are.' "
Whitney has always been sickly, her parents said. She has experienced the myriad levels and extremes of pain associated with AIDS infection, from fatigue and night sweats to painful sores in her mouth and uncontrollable diarrhea.
She has been hospitalized four times, although all admissions except one were after she was diagnosed with AIDS. She was first hospitalized with pneumonia a month after her birth.
In recent months, she has taken the drugs AZT and ddI, but neither has been effective, her parents say.
"But I have a rule in the house," Whitney said. "No crying. I don't want my family to be sad all the time."
But even she succumbs now and then. Her father said she sometimes gets angry about having to take her medicine and screams, "I wish I were dead already!"
Whitney's sister, Becky, 7, says she pesters her sibling to take her medicine all the time. "Pretty soon I won't have a sister to play with because I'll be the only girl left in the family," Becky said quietly.
Anita Williams is to accompany her daughter to the NIH's National Cancer Institute, where Whitney will spend five to eight days.
She is expected to be started on rifabutin, a new drug approved by the Food and Drug Administration this year. The hope is that rifabutin will fight the onset of a blood infection called Mycobacterium avium complex, which causes severe symptoms in the final stages of AIDS.
On the national level, all no-identifiable-risk cases are reviewed and most are subsequently linked to the standard factors, said Kent Taylor, a spokesman for the CDC in Atlanta.
"However, some stay on the list because we can't get the cooperation of the family, or the patient dies. And our investigators must depend on the information that is given to us," Taylor said.
"There are people whose illness is not a mystery at all. Some just don't realize, or refuse to admit, they have engaged in high-risk behavior.
"And a few, perhaps including the case of this young girl from Illinois," he said, "may never be resolved."
by CNB