Too Young to Die

They are the "AIDS babies." Born before doctors learned how to prevent HIV transmission to newborns, hundreds of California kids are growing up under the burden of a deadly disease.

Some women refuse testing because they believe they are at low risk, and some providers fail to offer testing because of perceived low risk. Some health care providers apparently believe they can assess at-risk women and are disinclined to offer all women the test, with its extensive and onerous pretest counseling.

"There are still a lot of doctors around the country who are afraid to break that barrier and test their patients for HIV because of the stigma," says Kelly O'Riley at the Glaser Foundation. "Doctors assume that if their patients are upper middle class, there's no need to test, but of course that's not true."

A total of 5,434 AIDS cases among women of childbearing age were diagnosed from 1988 through 1997 in California, and San Francisco County has the highest percentage of HIV/AIDS patients in the state.

"I've never had anyone turn me down when offered a test," Dr. Wara says. In fact, evidence suggests that more than 70 percent of women will accept a test if offered. "HIV rates are increasing most quickly among young women, which means we really don't have any idea who is infected anymore."

Certainly no one knew that Maria Johnson's mother was infected.

Maria's foster mother, Heather, who was 42 and had already suffered 13 miscarriages but had no children, started taking care of Maria when she was a baby. At that time Maria's mother, a friend of Heather's, was in and out of jail and very sick on drugs. Heather didn't test Maria until another family member told her that Maria's older sister had HIV. Maria's mother then died of AIDS when Maria was 6 years old, but Heather didn't take her to the funeral.

Maria, the youngest in a family of 13 children, doesn't remember her mother at all. "I guess I look like her," she says. "They say she was a good person, but she made a wrong decision."

Cemeteries and flower gardens line the road to the Johnsons' mobile home in Daly City. Inside, pictures of smiling African-American family members hang on the walls.

Maria's pills sit openly on the kitchen table as a reminder to take them, but she hides them when her friends spend the night. Her friends don't know she has HIV. Maria, almost 13, doesn't see any reason to tell them, and Heather worries about stigma from her foster daughter's teenage classmates.

"I don't trip off it," Maria says. "I know I have to take my medicine, so I do, and then I go on about my business. The doctors, they say they can't hardly find the bug in my blood anymore."

Maria's foster parents called HIV the "bug in her body" when she was 3 years old and she wanted to know why she had to take medicine.

"Back then you had to drink it -- it was nasty stuff," says Heather. "We had to hold her down, she was so strong, and we held her nose and gave her water as a chaser."

Heather says Maria understands that HIV is more than a "bug."

"She knows the relationship between HIV and AIDS," she says. "She knows all about sex. She doesn't ever want to talk about it, but I don't think she's in denial. Sometimes she gets tired of taking her medicine and I have to remind her that it's for her own good."

Maria used to go to the hospital once a month, but now she goes only twice a year. "That's not more than normal kids," she says.

Heather, a retired dispatcher for the Police Department, says she never treated Maria as if she was different from any other child.

"They told me to wear gloves and be careful of her blood, but I didn't do any of that," she says. "Only weak people with AIDS want pity and sympathy."

The only acknowledgment of Maria's condition for which Heather is thankful comes from California Children Services, a state agency that pays the $10,000 to $12,000 a year for Maria's medicine.

Maria, who likes math best, prefers model sports cars to stuffed animals. She brought home good comments from all of her teachers today and reads the entire progress report aloud, her voice rapid with excitement.

"Yeah, I'm tight," she says. Heather kisses her on the cheek.

Maria has to improve her grades, currently C's and D's, before she can have a few of her birthday gifts. But right now Maria is more interested in trying out her new bowling ball than studying for her science test this week. Before she leaves for the alley Heather reminds her to take her medicine. Maria groans, but she swallows the pills, making a face.

"I guess I'm just an optimist," Heather says later. "I feel like this child was placed with me for a reason, and I don't think that reason would be to die. Of course, you live one day at a time, and you hope that maybe tomorrow there will be a cure."

Metko says he harbors no hope of a cure for himself, but he plods to the hospital for the treatments to extend his life. He watches a needle slide into his upper arm with detachment.

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