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Fifteen-year-old Antwoine has the kind of gentle grin that would make female classmates blush. His tall frame, trim, dark hair and glasses lend a studious air that is offset by typical youth fashion: untucked, red plaid button-down and white T-shirt hanging over baggy jeans. CD headphones peep out from under his collar. It’s a look that teens carefully plan to look not-so-carefully planned. And like most teenagers, Antwoine roots his identity in his clothes, music and hobbies—not in the human immunodeficiency virus (HIV) he acquired at birth.
Antwoine is among a growing number of long-term survivors of HIV, the virus that causes AIDS. The five-pill-a-day regimen he has followed since diagnosis at age 5 allows Antwoine to live with hope instead of fear.
He doesn’t listen to those who equate HIV and AIDS with an automatic death sentence. “I would tell people who choose to believe that a different story,” says the ninth-grader who dreams of playing baseball for the Yankees. “Yes, I do have HIV, but I take my meds every day and do right for myself. No one knows when it’s going to be their time, so I concentrate on the future.”
The opportunity to focus on the long-term aspects of surviving with HIV is also welcomed by the caregivers and researchers who treat Antwoine and hundreds of other HIV/AIDS patients each year at St. Jude Children’s Research Hospital.
Yet, with 40 million people infected with HIV and 15,000 new infections occurring daily, the search for a cure continues so that this preventable disease can finally be stopped.
Patricia Flynn, MD, of St. Jude Infectious Diseases believes Antwoine has every reason to feel optimistic. Treatment has improved dramatically since the early 1980s when the AIDS epidemic was identified. “Between 1987 and 1995, we were all focused on single-drug therapies,” she says. “It wasn’t until 1997, when we finally learned that many drugs acting against the same target are going to be more effective, that we came up with highly active antiretroviral therapy, or HAART.”
A three-drug cocktail now considered standard therapy, HAART allows people with HIV to manage the illness as a chronic condition much like diabetes. The drug combo has shown remarkable success in stemming the transfer of HIV from mothers to their babies, which is the most common way children under age 13 are infected with the virus.
As a member of the Pediatric AIDS Clinical Trials Group (PACTG), St. Jude played a significant role in a successful 1992 study—the first randomized clinical trial to test the drug zidovudine in pregnant women. “We’re proud to say that we contributed a large number of women to this revolutionary study,” says Flynn, who holds the Arthur Ashe Chair in Pediatric AIDS Research at St. Jude. “By 1994, we saw a dramatic drop-off in the number of infants and children with HIV. Taking a clinical research finding and seeing its impact in the general population has been very exciting.”
The study led to therapies that have reduced the rate of mother-to-infant HIV transmission from as high as 25 percent to below 2 percent in North America and Europe. Yet, all women do not obtain treatment; in the United States 300 to 400 new babies are born with HIV infections each year. Flynn says contributing factors include a lack of prenatal care and women unaware of their HIV/AIDS status. According to Flynn, 15 percent of HIV-infected women learn about their condition during labor. She also points to a lack of universal HIV screening of pregnant women and growing rates of HIV infection among women of childbearing age as additional problems.
Currently, the biggest challenge Flynn sees is a mushroom in the number of adolescent HIV cases, which largely result from risky behaviors. Half of the nation’s new HIV cases occur in youth aged 13 to 24. A Centers for Disease Control and Prevention survey of 15,000 high school students found that about half had unprotected sex and more than 250 injected illegal drugs despite the fact that nearly all the students had been exposed to HIV/AIDS education.
Already struggling to promote prevention tactics, caregivers have their work cut out for them as they attempt to convince teens that following strict therapies could lead to longer, productive lives.
St. Jude pediatric nurse practitioner Marion Donohoe, RN, prays for an AIDS cure if for no other reason than to stop her heart from breaking every time one certain patient comes for follow-up visits. “She is the most precious young girl, very quiet, healthy, an honor-roll student,” Donohoe says. “She looks up at me and asks the same question every time: ‘Did you find the cure yet?’ All I can do is smile and hug her and tell her, ‘No, but we’re working on it, sweetie.’”
Until a cure is found, St. Jude staff members can offer patients some good news: HIV-infected children who adhere to their medicine schedules are expected to lead fairly normal, healthy lives.
“If you are born with HIV, and it’s not under control, it can cause significant central nervous system damage and developmental delays,” says Nehali Patel, MD, who treats St. Jude HIV/AIDS patients. “But if it’s treated and parents give medicines as prescribed, you’ll find kids who, if you saw them in school or out playing with their friends, you would never know had HIV.”
But convincing teens to conform to a daily pill routine isn’t easy, especially when most regimens must be taken twice a day. “That’s a huge burden, and they get tired of it,” Patel says. A lack of support from friends and family, side effects of treatment and difficulty in accepting the illness can also be barriers. But patients who do not adhere strictly to the schedule can develop resistance to medicines, making the drugs useless. With only 18 to 20 medications available to treat HIV/AIDS, wiping out options can create dangerous situations.
“New medications are being developed, but it takes several years, and our patients can’t count on always having another regimen available, especially if they’ve been on multiple drug regimens since birth,” Patel says. She adds that many St. Jude patients have been able to use single sets of drugs for five years or more simply because they are disciplined about taking their pills.
St. Jude patients never have to carry the burden of treatment by themselves. The hospital offers a multi-disciplinary team of doctors, nurses, social workers, pharmacists, nutritionists, psychologists, chaplains and psychiatrists to tackle all aspects of the disease. “Our approach is family-centered, comprehensive and coordinated, and we treat families as partners,” says Donohoe. “If you ignore any aspect there would be guaranteed failure because the kids have different needs every time they visit.
One of the most devastating aspects of the disease is the stigma attached to being HIV positive. While more and more teens understand they can live long lives with the virus, they are still hesitant to tell even their best friends. St. Jude created a special weekly support group for teen patients so they can talk about the issues they face in a safe, non-judgmental environment.
“You’d be amazed at how many brave, courageous teens are out there who choose not to be defined by their disease,” Donohoe says. In a study where teens were asked to divide their lives into pie pieces with slices for school, family, friends, hobbies and HIV, Donohoe says most made HIV the smallest sliver. “They go through different stages of how ‘big’ HIV is in their lives, but they all want to be more than the disease. They want to lead healthy lives.”
Because patients are living longer, St. Jude researchers can study late effects of disease and treatment such as why some patients experience metabolic bone disease, abnormal build-up of fat in the gut and upper body and issues that affect adherence patterns throughout life. St. Jude investigators are studying how children metabolize HIV/AIDS drugs in order to develop tailored dosages, and the hospital has begun a process to help patients transition to adulthood with information on insurance, employment and public assistance programs. Researchers at St. Jude are also conducting safety trials for an AIDS vaccine designed to overcome the various strains of HIV.
St. Jude is continually involved in community outreach efforts, both in the United States and around the world. Patel says there can never be enough education because even though more people seem aware of how AIDS is transmitted, the stigma is still present.
“The more people know about the problem, get tested and learn about the disease, the less stigma the disease will have, and people won’t have to live in fear all the time,” Patel says. “I, of course, hope for a cure. But I would also like to see the day when HIV is treated as a chronic illness, so that kids with HIV can be like those who have sickle cell disease and sit in a classroom without being afraid.”
Antwoine can’t help but dream of the day scientists invent a magic tablet that will rid him of HIV. “That would be the greatest,” he says. Yet, he keeps a positive outlook on his life, his pills and his regular check-ups at St. Jude. “I don’t see those as things that limit me,” he says, flashing his grin again. “They are the things that keep me alive so I can do what I want to do.”
His mother echoes her son’s enthusiasm, “He is a miracle,” she says. “He’s going to make it.”
Reprinted from Promise magazine, spring 2004
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