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Parents of HIV-Positive Girl Shun Drug AZT : Medicine: Their decision comes amid rising evidence that the drug is not as effective as hoped, and that the side effects can outweigh the benefits.

June 26, 1994|LAURA BAENEN | ASSOCIATED PRESS

GOLDEN VALLEY, Minn. — Lindsey Nagel brought two mementos from her native Romania when she was adopted by a Minnesota couple in 1990: a stuffed toy panda and HIV, the virus that causes AIDS.

Roxy the panda is a visible reminder of Lindsey's homeland. The virus, which hasn't developed into full-blown AIDS, is not apparent in the vivacious 3 1/2-year-old.

Lindsey's parents, Steve and Cheryl Nagel, credit her health to their defiance of doctor's orders in the fall of 1992. They stopped giving their only child the drug AZT because it caused an upset stomach, loss of appetite and severe leg cramps. The little girl woke up night after night--often more than once a night--gripping a leg and crying in pain.

"In my mind, I wasn't going to put that kid through a bunch of misery so she could live another six months. I would rather have her live two good months than to have her live six bad months," Steve Nagel said.

But Lindsey has gone without any medication for nearly a year and a half under a different doctor's care and is outwardly healthy.

More and more studies seem to support the Nagels' decision in light of the side effects of AZT, and other patients around the country have sworn off the drug. Some have never taken it.

AZT is the common name for azidothymidine, the first antiviral drug approved for use against the AIDS virus and still the one most commonly used.

Studies last year showed that giving AZT to people who are not yet sick doesn't help them live longer but modestly delays the onset of symptoms. A study published in the March 17 issue of the New England Journal of Medicine suggests that the drug's side effects outweigh any benefit.

While the drug's maker, Burroughs Wellcome, says the study doesn't mean physicians should stop using AZT in early treatment, it also said the issue comes down to patient choice.

Experts think the drug's effectiveness begins decreasing after six months and is nearly diminished after two years, according to Derek Link, a treatment advocate for the Gay Men's Health Crisis, a private, nonprofit social service agency in New York. Lindsey had taken AZT for 22 months.

The question has become when to take advantage of those beneficial effects--before or after symptoms develop, Link said.

"I can't tell you the little golden rule here, because there isn't one," he said.

Nagel, a restaurant kitchen manager, and his wife, a real estate agent's assistant, acknowledge they also don't have all of the answers about AIDS. They're not even sure how Lindsey was infected.

She was born Oct. 15, 1990, to a poor, single woman with three other girls in Petrosani, a coal-mining town in the Transylvanian Alps.

Since Lindsey's mother is HIV-negative, they believe Lindsey received tainted blood in a transfusion while she was hospitalized for an ailment before her adoption was final.

The Nagels learned of the infection in early 1991, after a battery of tests recommended for all international adoptees.

"That was the worst day of my life," Cheryl Nagel said.

For two years, she and her husband told no one except family about Lindsey's HIV status, hiding the grim reality while trying cheerfully to accept congratulations and baby outfits.

"I thought in my mind I'll take all these clothes back to Dayton's or wherever they got them and buy . . . a black dress and save the rest for the coffin," she said.

Planning a funeral was never far from their minds, because doctors gave Lindsey only a 20% chance of reaching her second birthday, Steve Nagel said.

The Nagels' outlook changed after they decided on their own to stop giving Lindsey AZT around her second birthday.

"It was pretty shaky to let go of it because you're going against the whole medical community," Steve Nagel said.

Physicians have been generally more inclined to prescribe AZT for children without symptoms than for asymptomatic adults because the disease usually progresses more rapidly in children, said AIDS researcher Paul Volberding, director of the AIDS program at San Francisco General Hospital.

Nonetheless, Volberding said doctors try to strike a balance between benefits and side effects when deciding whether to prescribe AZT.

"I think it's quite appropriate to stop the therapy for patients who have severe toxicity of drugs. In general, you can't expect to get much benefit from a drug if the patient doesn't tolerate it," Volberding said.

The Nagels say they'll never give Lindsey AZT again.

Little by little, they've allowed themselves to think about her future. The Nagels, who are both 36, bought life insurance for themselves and opened a savings account in her name. They take joy in Lindsey's eagerness to learn, her energy and inquisitiveness.

"Every day she asks me what we're going to do today. I say we're going to get up and eat breakfast and then we'll worry about what we're going to do," Cheryl Nagel said.

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