Pediatric AIDS in Texas, 1990-2000: Progress and Challenges

Baylor International Pediatric AIDS Initiative

Pediatric AIDS in Texas, 1990-2000: Progress and Challenges

by Mark W. Kline, M.D.

Hug
Janie Queen gets a big hug from mom, Sandra Queen

The statistics are sobering. Through December, 1999, 369 Texas children had been diagnosed with AIDS, and 216 were known to have died. Many more are HIV-infected, but have not yet developed AIDS-defining conditions. Children forever robbed of childhood, many destined for lives of poverty, disease, and early death. Only a decade ago, children with HIV faced a bleak future. In the absence of effective therapies, HIV was a death sentence. Most HIV-infected children lived short, painful lives, ravaged by terrible opportunistic infections. Ultimately, many simply just wasted away and died, half before the age of two.

Only a decade ago, it was inconceivable that Janie Queen, or dozens of other Texas children like her who are growing up today with HIV, could exist. Infected with HIV at birth, Janie was only an infant when she was adopted by the Queen family, which includes father Michael, mother Sandra, and seven children, ranging in color, in four-year-old brother Terryn’s words, from "vanilla" to "chocolate."

Sustained by the love of her family and the latest advances in HIV care and treatment, Janie is today a happy and perfectly healthy eight-year-old, straight-A, third-grader. Her family has never treated her illness as an ugly or shameful thing, nor have they pretended it doesn’t exist. Janie’s teachers and classmates are well aware of her HIV status; yet, she has not had to face the stigma and discrimination endured by so many early victims of the epidemic. She attends public school in an unrestricted setting, loves to swim in the neighborhood pool, and expresses in her artwork her invariably sunny disposition. Janie’s mother Sandra says, "Janie is special for a lot of reasons. But her health is not the most special thing, we think, about her."

For those of us who have cared for HIV-infected children for the past decade or more, the transformation of pediatric HIV from a severe, often acutely fatal disease to a chronic, controllable infection is nothing short of miraculous. Children who four years ago literally were on their deathbeds, unable to play or attend school, their growth and development stunted by disease, today are completely healthy.

Powerful combinations of anti-HIV medications, so-called "drug cocktails," shut down the ability of the virus to replicate or reproduce itself, driving levels of HIV so low in the blood that the virus cannot be detected by even the most sophisticated tests. Recovery of immune function soon follows, and health is restored. Children who were requiring frequent hospitalization for treatment of complicating infections like pneumonia, diarrhea, and meningitis, today have only to contend with an occasional visit to the clinic for a routine physical examination and blood tests. It has been said that the dramatic advances in HIV treatment have transformed our clinic at Texas Children’s Hospital into a place "as cheerful as a daycare center."

While the transformation of pediatric HIV infection in Texas and the United States is a source of justifiable pride, too many children have been left behind by improvements in HIV prevention, care, and treatment. For many children, current HIV therapies remain far too complex, too impractical, too inaccessible.

For most Texans, the degree of suffering produced by HIV and AIDS is unimaginable. For those of us who have seen it with our own eyes, it is unforgettable. As a pediatrician, I feel a special obligation to advocate for the needs of children. As a specialist in infectious diseases, I view HIV as the greatest challenge of my generation. It is the professional privilege of a lifetime to have the opportunity to contribute in even a small way to blunting the effects of this epidemic scourge.

This is a time of genuine optimism in the fight against pediatric AIDS. Hundreds of Texas children are free of HIV infection today because their mothers were tested for HIV and treated with antiretroviral medications. Children who have acquired the virus are living better and longer than ever before. The immediate future holds promise for even more powerful and simpler treatments for HIV. The progress of the past decade, and the promise of the next, offer hope to hundreds of Texas children, mothers, fathers, and families affected by HIV.