Copyright 1999 The Atlanta Constitution
The Atlanta
Journal and Constitution
December 1, 1999, Wednesday, Home Edition
SECTION: News; Pg. 12A
LENGTH: 1489 words
HEADLINE:
CHILDREN WITH AIDS: Young lives filled with trauma;
Treatment has improved,
but prevention of transmission is a challenge
BYLINE:
Lillian Lee Kim, Staff
SOURCE: CONSTITUTION
BODY:
In 1988, a baby girl showed up at Grady
Hospital with a puzzling illness.
The infant suffered relentless
diarrhea of no diagnosable cause, and eventually died.
Several years
later, the baby's brother was brought to Grady. Testing revealed he was infected
with HIV. In reviewing his sister's case, doctors realized she must have been
Grady's first AIDS baby. At the time, this knowledge probably wouldn't have
aided her.
Today, the Pediatric Infectious Disease Program at Grady
Health System cares for about 200 HIV-infected children and adolescents, plus
another 120 infants exposed to HIV through their mothers. The outlook for these
kids is far better than it was a decade ago.
"We've had remarkable
changes," says Dr. Steven Nesheim, the program's director and also an associate
professor at the Emory School of Medicine. "In 1993, we had 14 deaths. This
year, nobody's died."
Still, AIDS poses unique challenges in children.
The disease can be extremely difficult to treat, especially with the limited
number of HIV drugs available for pediatric use.
Also, HIV often is only
one of the problems of many families who bring their kids to Grady. Poverty,
unemployment, homelessness and substance abuse are common.
"On any given
day for a person, having AIDS might not be as important as the fact that they
haven't got any money or haven't got a house," Nesheim says. "On the outside, it
looks like AIDS would always be on people's minds, when the reality is, it's not
the first thing on their minds a good bit of the time."
In addition,
other, less dire barriers affect care. Some obstacles are easier to overcome
than others.
Communicating needs
"How do you say 'You're
welcome' in French?" asks Elizabeth Snyder, one of Grady's nurse practitioners.
It's Monday morning and people are gathering in the workroom where the
doctors, nurses and other staff members hang out between patient visits.
"The Haitian family, huh?" someone says.
"Fitzroy speaks French,
doesn't he?" volunteers another.
"No, I speak Spanish," Fitzroy tells
them. Faces fall.
Flipping through the patient's file, Snyder finds a
solution.
"Wait, it says here 'FA fluent English,' " she reads. "What's
'FA'? Father?"
And she goes off to hunt down the English-speaking
parent.
Tracking infected infants
As of September 1999, Georgia
reported 90 cases of AIDS in children under 13 years old. The state doesn't
track HIV infections, but that number is believed to be far higher.
Nesheim estimates Grady handles roughly two-thirds of the state's
pediatric AIDS cases, and a similar portion of HIV-infected children. The
program, which receives funding through the Ryan White CARE
Act, sees patients up to 21 years old. Medicaid covers up to 90 percent
of costs for children with AIDS under 18.
The clinic also follows babies
born to HIV-positive women, of whom about 60 to 70 give birth at Grady each
year.
Mother-to-child, or perinatal, HIV transmission accounts for 9 in
10 HIV infections and AIDS cases among children under 13.
Studies
estimate that 15 percent to 26 percent of infants born to women with HIV will
turn out to be infected.
The babies' HIV status can't be determined at
birth, because all infants born to infected mothers carry antibodies to the
virus for up to 18 months.
Thus, the standard HIV antibody test can't be
used for infants. Instead, Grady doctors use a testing method called polymerase
chain reaction that detects minute quantities of the virus in the blood.
"We get a couple of those done in the first two months of life," Nesheim
explains. "If those two are okay, that baby has a really, really high chance of
not being infected."
The program follows babies until they are 2 years
old, to be absolutely sure of their HIV status. During this two-year period, the
clinic provides all primary care, including well-child checkups.
"Most
people (who come to Grady) don't have transportation, so it's a little bit of an
ordeal for them to get to the doctor," Snyder says. "If they had to go to
several different places, they wouldn't."
Baby steps
"Have you
started her on solid food yet?" Dr. Mary Lou Lindegren asks a young mother. The
mom has HIV; her baby is several months old.
"No, I'm still just feeding
her formula," the mother says.
"You can start her on soft foods, like
cereal," Lindegren advises.
"Oh, good, because every time somebody has a
plate, she wants some."
"Well, you might want to get your camera out the
first time you give her cereal," Lindegren says wryly, "because it's really an
interesting event."
Bitter pills
The clinic, in Grady's Ponce de
Leon Center in Midtown, is a pleasant place, with brightly decorated corridors
and clean examination rooms. The crown jewel is the playroom, equipped with an
abundance of toys and a full-time baby-sitter provided by AID Atlanta, an AIDS
service organization.
But there are reminders that this is an AIDS
clinic. Large posters on the workroom walls depict HIV pills, rendered actual
size. Some are bigger than a cough drop. Some kids take liquid medicines
instead. But these are so foul that infants and young children often spit them
up. One of the most effective HIV drugs, Norvir, tastes like a burnt clutch
smells, and leaves an acrid aftertaste that taints the tongue all day.
Pediatric AIDS doctors and nurses around the country have compiled
dozens of tips for getting kids to down the drugs. Nesheim favors lining a
child's mouth with peanut butter. Another suggestion is to mix drugs with
chocolate pudding.
"But you have to be careful not to take a favorite
food and ruin it for them," warns Julianna Gaston, the clinic's nutritionist.
HIV treatment is further complicated by the fact that children often
can't manage their complex drug regimens. They may need to take several pills at
a time, several times a day, some on an empty stomach and some with water or
food.
Missing doses can allow the virus to become drug-resistant.
"It's very difficult, even for people from a high socio-economic
background, " Snyder says. "People are busy. They're mostly caught up with
things other than the virus. And if the kids are well, it's not really a
motivating factor. "
Because HIV drugs usually are taken in combinations
of three or more, and because only 10 of the 16 approved HIV drugs can be used
in children, kids can run out of treatment options. So doctors and nurses make
sure children are getting their medicine exactly as directed.
An
important routine
"Okay, so Kroger is ordering her medicine, and you're
picking it up, right?" Snyder asks a 5-year-old's grandmother, who nods.
"And you're giving it to her twice a day?"
"That's right."
"Did you give her both her doses yesterday?"
"Yes."
"How
do you remember what time to give her the medicine?"
"Well, I give it to
her after I get up, at 6:30, and then I give it to her again before she goes to
bed, at 8," the elderly woman replies.
"That's very good," says Snyder,
satisfied.
Reducing transmission
It's not unusual for children
with HIV/AIDS to be in the care of a grandparent. Some infected kids outlive
their infected parents; some don't.
To help children and families deal
with the emotional issues surrounding AIDS, the clinic has four social workers
and a psychologist.
Social work is a vital element of the next major
hurdle in pediatric AIDS: eliminating perinatal transmission of HIV.
Lindegren, who sees patients at Grady but also is a researcher at the
Centers for Disease Control and Prevention, believes it is possible to "
maximally reduce" mother-to-child infections in the U.S.
A pregnant
woman with HIV can greatly reduce her risk of infecting her baby through certain
preventative steps. She should take HIV drugs during pregnancy and labor and
abstain from breast-feeding. The drugs also should be given to the baby for
several weeks after birth.
But these measures can't be taken unless the
mother knows her HIV status and is in prenatal care.
"There are women
who don't show up for prenatal care, and basically show up in labor," Lindegren
says, adding that this is a particular problem among substance-abusing women.
"We have to get high-risk women into prenatal care, offer them interventions and
get them into HIV care."
A ray of hope
"Let's see, it says here
you were on (the AIDS drug) AZT while you were pregnant, and the baby was on
AZT, too," Lindegren says to the mother of the cereal-ready infant.
"Yes."
"And you know that so far all her tests have come back
negative," the doctor says.
"Yes," the mother says again, smiling.
"Well, it looks pretty good," Lindegren says with cautious enthusiasm,
"but, of course, we'll need to test her again when she comes in for her next
checkup. And hopefully, we'll eventually be able to give her a clean bill of
health."
The mother beams at her baby and picks her up to go.
GRAPHIC: Graphic
AIDS
> Children under 13
with AIDS in Georgia, as of Sept. 30: 90
> Adults and teens with AIDS in
Georgia: 9,741
> Children under 13 with AIDS in the United STates: 3,381
> Adults and teens with AIDS in the United States: 279,142
How
children with AIDs were exposed to HIV:
Received blood transfusion, blood
components or tissue: 4%
Hemophilia/blood coagulation disorder: 3%
Mother with HIV or at risk of HIV: 91%
Unknown: 2%
How the mothers
of children with AIDs were infected or exposed to HIV:
> Injecting drugs:
39.4 percent
> Sex with an injecting drug user: 18.1 percent
> Sex
with a bisexual man: 2.2 percent
> Sex with a hemophiliac: 0.4 percent
> Sex with a transfusion recipient with HIV: 0.3 percent
> Sex
with an HIV- injected person of undetermined origin: 14.9%
> Recipient of
blood transfusion, blood components or tissue: 2 percent
> Infected with
HIV, from undetermined origin: 22.7 percent
Race/ethnicity of children with
AIDs reported from lJune 1998 to June 1999:
African-American: 63.1%
White: 11.3%
Hispanic: 25%
Asian/Pacific Islander and American
Indian/Alaskan native: 0. 3% each
Sources: Centers for Disease Control and
Prevention; Georgia Department of Health; staff research by Lillian Lee Kim
/ VERNON CARNE / Staff
Photo
Dr. Steven Nesheim, director of the
Pediatric Infectious Disease Program at Grady Health System, is encouraged by
the fact that the program has seen no deaths from AIDS this year. / PHIL SKINNER
/ Staff
Graphic
WEEK'S EVENTS
In connection with World AIDS DAy
today, these events are planned in metro Atlanta:
> Today at 4:30 p.m.
the Fulton County Health Department will be holding a health fair, featuring
free HIV screenings, on the street in front of the department at 99 Butler
Street. AT 6 p.m., there will be a ceremony featuring a special quilt made in
honor of people with AIDS and a candlelight vigil. Information, call
404-730-1468.
> On Sunday, 3- 5 p.m., AIDS Survival Project will host a
free community treatment forum on comprehensive approaches to HIV treatment, at
the Sheraton Colony Square Hotel. Information, call 404-874-7926.
> On
Monday, 6-9 p.m., the American Foundation for AIDs Research will host an
educational program on HIV drug resistance and lipodystrophy, a condition
affecting many people on certain HIV drugs, at the Hyatt Regency Atlanta.
Registration, call 1-800-203-8440.
LOAD-DATE: December
1, 1999 
