Miami Herald (MH) - Tuesday, July 16, 1991
Peggy Rogers; Herald Staff Writer

Many need drugs that cost $200 a month, more than parents can pay. Some get shuttled among several different clinics for care. Even small things like the lack of an infant car seat can mean not getting to the doctor for treatment.

The needs of the children and their parents are many, the number of casualties is growing, and help remains limited -- in part because the victims are silent.

More than 160 Broward infants a year -- nearly nine of every 1,000 babies -- are born to women with the AIDS virus, according to a recent federal study. That rate, similar throughout South Florida, is higher than anywhere else in the state and most of the country. Many of the babies will come down with the killer disease, dying in a few months or years.

Yet they have been overlooked so far in the AIDS epidemic, say local doctors and children's advocates.

"The children haven't been getting their fair share," said Dr. Susan Widmayer, director of the Children's Diagnostic and Treatment Center. "There's no one to speak out for them. The children don't vote. And their parents are very, very poor. These are people who don't have transportation, who often don't know how to fill out the forms for all the services they need."

State health records show that 58 Broward children up to age 12 have been diagnosed with AIDS. Hundreds carry the HIV virus that leads to AIDS, suffering the initial rashes and sicknesses. But the reach of the disease is even greater than that, doctors say.

Children are showing up in emergency rooms with advanced infections like pneumonia, never having been diagnosed or treated for AIDS, said Dr. Margaret J. Gorensek, an infectious diseases specialist with Cleveland Clinic Florida in Fort Lauderdale.

"We have a major problem in Broward," Gorensek said. "It's something that hasn't been that well known, even by the medical community, because a lot of these children are slipping through the cracks. They're not getting any care."

Poverty is one reason. Politics may be another.

State health authorities and the Diagnostic and Treatment Center have run into both in trying to create a single clinic for all HIV and AIDS children.

Broward County, given $1.8 million in federal AIDS money earlier this year, recommended that none of it go for a children's clinic. More adults than children are infected, and the money should go to the greater good, county administrators said.

Lobbying by children's advocates partially changed their minds. The Children's Diagnostic and Treatment Center received $143,000 to start the clinic at its Fort Lauderdale headquarters. But the center was told last week that it would get none of the $108,000 it sought for drugs to help the children fight infections.

The AIDS clinic means that children no longer will have to be shuttled among two or three medical centers. It just completed its second week, employing part-time and volunteer doctors, expecting to care for at least 160 pediatric patients this year. But because of the lack of drugs, directors fear that prescriptions won't be worth the paper they're written on.

"The poor mother goes through the door, and she might as well drop the paper on the ground," said Audrey Millsaps, a member of the Broward County Children's Services Board. "They can't afford it."

There are other necessities they can't afford.

One ailing toddler keeps missing appointments. Medicaid workers have been sending taxis to his door, but no one has provided him with a car seat, so the drivers refuse to take him.

Broward administrators say they did not ignore children in passing out the federal money, which resulted from a law named for teen-age AIDS victim Ryan White.

"You're dealing with the rationing of care," said Rick Lansford, a county health administrator. "When you talk about funding a whole new system for kids, it's more expensive."

Still, Lansford said, political activism also helps spur government to give more. While homosexual activists have protested and demanded more attention, children can't do that, he said.

"There's a severe need, and no one's out there screaming for them," he said. "No one's out there lying down on the sidewalk for them and making quilts for them. Nobody's doing that for the kids."

The parents often are least able to speak up, say these parents and social services authorities. The mothers also are ill, often poor and sometimes on drugs. State abuse authorities have taken many HIV and AIDS babies from their mothers' custody.

"Already, we've had great-grandparents, grandparents and foster parents bringing these children in, as well as some mothers," said Dr. Kayreen Burns, director of the diagnostic center's AIDS clinic.

The stigma also silences the parents, they say. Many tell no one, not neighbors, not friends, not even family, that they and their children carry a fatal virus.

A Deerfield Beach mother and father, who are infected and whose baby has AIDS, have not told their 8-year-old boy, who is not infected. Nor have they told any family members, with whom they are otherwise close.

"I listen to their conversation about the disease, and it makes me want to withdraw," said the mother, who has known for four years that she carries the AIDS virus. "When they talk about it, it's like the person who has it is bad. Like they did something wrong and deserved it."

CUTLINE: Nurse Anne Kogan, medical coordinator for the Children's Diagnostic and Treatment Center, examines a baby infected with the virus that causes AIDS. The center recently opened a clinic that will offer AIDS treatment to about 160 children this year-WALTER MICHOT/Miami Herald Staff

CAPTION: PHOTO Anne Kogan (b); photo: Anne Kogan
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