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30 Years Into the Epidemic, a Generation With HIV Comes of Age

FRIDAY June 3, 2011 -- In 1991, the life of a 6-year-old girl in Texas named Danielle began to unravel.

First, her father learned that he was infected with HIV, the virus that causes AIDS. Her mother went in for screening soon after and received the same grim result.

Then her parents' worst fears were realized: Danielle had been infected at birth.

In those days, when life-prolonging antiretroviral drugs were still years away, the prognosis for little girls with HIV was bleak.

"The mortality in kids was quite high: maybe a third of children would die in the first year of life and the number of kids that made it to 9 or 10 was pretty small, maybe 10 to 20 percent at best," said one pediatric HIV specialist, Dr. Russell Van Dyke, head of the Section of Pediatric Infectious Diseases at Tulane University in New Orleans.

As family and medical staff struggled to care for Danielle, she watched her parents fade. Her mother died of AIDS-related illness when Danielle was 7, and her father passed away when she was 10. Doctors told Danielle's remaining family that she probably wouldn't see her 14th birthday.

But she did enjoy that birthday, and many more since. Now 26, a young mother living in Dallas, Danielle (who preferred not to give her full name) is one of thousands of perinatally infected young Americans who reflect the sweeping changes that have marked the story of HIV/AIDS in America.

That story began, on paper at least, with the June 5, 1981, publication of an article from the U.S. Centers for Disease Control and Prevention describing a mysterious but deadly illness affecting a cluster of gay men. That illness, AIDS, has since claimed the lives of 594,496 Americans, the CDC announced this week, and more than a million people in the United States now live with HIV.

But with the advent of powerful HIV-suppressing drugs in the mid-1990s, things began to change. Now, the focus has turned from dying of AIDS to living with HIV.

"The fundamental change is that it's gone from essentially a fatal disease, or at least a disease with a very high mortality, to now a long-term chronic disease," Van Dyke said. For HIV-infected kids, "most are leading normal lives and going to school, doing all the things that we'd like them to do," he said.

That revolution in care has been a lifesaver for young people like Jasmine, a 17-year-old from Chalmette, La., who found out only last year that she had been infected with HIV at birth.

Luckily, Jasmine's viral load has remained low and as yet she hasn't needed to start anti-HIV medications. But the revelation of her status was tough.

"It's something that you deal with on a daily basis," said Jasmine (who also requested anonymity). "You just really have to pray about it because it's something that you can't get rid of."

Jasmine was comparatively lucky in that HIV has remained in abeyance most of her life. The situation was different for Danielle, who was placed on medications as a little girl.

She admitted that as a small child she often avoided the bad-tasting medicines, secretly throwing them away. And those repeat episodes of "non-adherence" to therapy gave HIV a chance to mutate and become drug-resistant.

"As a matter of fact, I now have resistance to all HIV meds except the ones I am taking now," Danielle said.

That's a common problem for young people with HIV, another expert said. "There are times when children are not going to do a great job of taking their meds," said Dr. Tess Barton, medical director of the AIDS-Related Medical Services Clinic at Children 's Medical Center in Dallas.

By the time children grow old enough to understand just how importance adherence is, the damage is done and many are left with just one or two drugs that work, Barton said.

In a recent study conducted led by Van Dyke, about two-thirds of the 451 perinatally infected children under active treatment who were tracked over time had HIV levels that remained so low they weren't detectable. Of the other third, most remained healthy but had more trouble keeping the virus at safe levels. "All of these kids have been on therapy most of their lives," Van Dyke noted. "We anticipate that they will be on therapy for the rest of their lives unless something dramatic changes."

Stigma is another burden these children face. Even in 2011, it's not easy for kids to disclose their HIV status to others, experts say. Danielle said she remembers being "isolated" as a child because of it. Even her teachers "would make up excuses why I couldn't go on school field trips," she said. "I'm thinking they just didn't want to deal with me."

But as she grew into adulthood, Danielle decided to try and change things. She's now a peer advisor working with a major hospital in Dallas, helping young people with HIV deal with their diagnosis and the stresses it can bring.

"I tell them HIV is a disease -- yes, it happens. But it happened already, and what you can do now is take that next step and take care of yourself," she said. "There are going to be some changes in your life and it's going to be like a roller coaster, but everything will be OK as long as you keep faith and you do what you have to do."

One recent big change in Danielle's life: her 15-month-old baby boy, born HIV-free thanks to his mom's use of virus-suppressing medications during pregnancy.

And so the generation of HIV-infected children that was not supposed to make it to adulthood has thrived and is now producing healthy children of its own.

Back in Louisiana, Jasmine said she's optimistic about her future.

"You don't have to be so down and out about HIV, you can enjoy your life," she said. "I'm very high-spirited about anything that I do. I have HIV, but I deal with it the best way that I can."

More information

Find out how you can protect yourself from HIV/AIDS at the HIV Medicine Association.

Posted: June 2011


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