A New Era For HIV Positive Children Means That Doctors, Caregivers Must Think About The Whole Child And His Future

October 20, 1998

Two factors are dramatically changing the nature of HIV and AIDS for children in the United States and other developed countries, UCSF immunologist Diane Wara, MD, told pediatricians at the American Academy of Pediatrics (AAP) annual meeting this week in San Francisco.

The number of children who become infected as newborns has dropped wherever HIV-infected pregnant women receive optimal anti-retroviral treatment for their own care as well as to decrease transmission to their infants, she said. Meanwhile, the number of HIV infected children who survive to school age and adolescence has risen wherever these children receive the new drug cocktail therapies -- San Francisco's treatment program has not lost a child to AIDS in three years.

"AIDS has changed from an acute disease of early infancy to a chronic illness," Wara said. "That means that treatment must take into account the psychological and social development of these children as they grow toward young adulthood." Wara spoke in AAP sessions on Sunday, October 18 and Wednesday, October 21. She is a professor of pediatrics at UCSF and chief of pediatric immunology/rheumatology for Lucile Packard Children's Health Services at UCSF Stanford. She is director of the Pediatric Clinical Research Center at UCSF and leads the UCSF Pediatric HIV Program, which combines patient care with research on new therapies and the resulting reconstitution of patients' immune systems. Nationwide, the institutions in the Pediatric AIDS Clinical Trials Group (PACTG) have been able to reduce transmission of the HIV virus in utero or during birth in the communities they serve from 26 percent in 1994 to approximately 5 percent in 1997. In San Francisco, there has been only one case of perinatal transmission of HIV in the past three years.

The model for these successful perinatal HIV programs was co-founded by Wara in the 1980s. She and colleagues in the department of obstetrics and gynecology at San Francisco General Hospital Medical Center developed the Bay Area Perinatal AIDS Center (BAPAC), the nation's first single-site program to care for HIV-positive pregnant women and their families.

"We expect fewer than 500 children a year to be born with HIV in the U.S. thanks to these programs," Wara said. "We're doing beautifully in reducing perinatal transmission nationally, and beautifully in San Francisco. But there still are many areas of the nation with large numbers of seropositive women and no centralized delivery for their care, and in those areas transmission rates still exceed 5 percent. In Northern California, the greater East Bay and the Central Valley are two examples."

Most European nations also have been able to reduce perinatal transmission, and the number of infants with HIV is dropping in the developed world. Worldwide, however, 1.1 million children under 12 are infected with HIV. It is estimated that half a million die every year, and another half million are newly infected. "In developing nations, perinatal transmission still is at least 30 percent," Wara said. These nations have little money to test pregnant women for HIV status, and the aggressive drug therapies that have made the difference in the developed world are too expensive elsewhere. A study completed recently in Thailand shows that a shorter course of drugs can reduce the perinatal transmission rate to approximately 10 percent. That data offers some hope, Wara said, but prevention efforts in the developing world also are stymied by a dilemma: an additional 10 to 14 percent of children are infected by their mothers during breastfeeding. Yet health workers are loathe to discourage breastfeeding because it is the best way to prevent infant malnutrition.

Keeping HIV Infected Children Well

The UCSF Pediatric AIDS program currently oversees the care of more than 160 families from throughout Northern California and as far south as Bakersfield, totaling some 3,000 patient service contacts each year. It has three clinics: Alejandro Dorenbaum, MD, leads the inpatient and outpatient service at UCSF; Ann Petru, MD, leads the program at Children's Hospital, Oakland, and Karen Beckerman, MD, leads the Bay Area Perinatal AIDS Center based at San Francisco General Hospital Medical Center.

The program is a leading member of PACTG, which is funded by the National Institutes of Health. Wara chairs the PACTG immunology research group and Dorenbaum leads its major perinatal transmission study. The UCSF program's success in keeping children well with HIV begins with early, aggressive therapy, Wara said. "We use combination anti-viral therapy, involving two or three drugs, as soon as the child is diagnosed," she said "We do not wait for symptoms. We try to eradicate all signs of the virus in the bloodstream -- though of course we're not so naive as to believe we've eradicated the virus entirely from the child's body. We're working to bring the disease under control and to convert it to a chronic illness."

The clinics also work hard to identify children who are infected. Because treatment of HIV positive mothers has been so successful in preventing perinatal transmission, it would be easy to miss those few babies who still are infected, Wara says. So each infant is followed and tested soon after birth and at least twice afterwards.

Over the long term, the success of these efforts depends less on tests and drugs than on teamwork, Wara said. Nurse practitioners, nurses, social workers, dietitians and psychologists are key members of each clinic's team. They work with the family, the school, the church and community services to help children who often live in families where parents or others also are infected with HIV, and where psychosocial issues are complicated. Team members keep in close touch with families, calling to remind them about clinic appointments, working with each child's caregivers as individuals to help them understand the child's care. Often the communication involves translators; the families speak many languages. "As these children are living longer, we have to pay attention to the quality of their lives, their surroundings, their education, the knowledge they have about their disease, their own personal thoughts and feelings about the medications they are receiving," Wara said.

Just the issue of 'disclosure' is prickly -- telling a child that she has HIV, and counseling her about when and how to tell others about a disease still associated with fear and stigma. "We are evaluating when we should tell children," Wara said. "We're asking, how should we tell them? What role do their families play? How does knowing that they have HIV affect their willingness to take their medications??

As more of the children reach adolescence, the team is exploring ways to counsel them about sexuality, sexual responsibility and intravenous drug use. Nurse practitioners and counselors are encouraging the children's efforts in school, looking ahead to their opportunities to finish high school and eventually support themselves in the community.

"This change also has influenced the research we do," Wara said. The group continues clinical research on drugs to stop HIV transmission and to treat children with HIV more effectively. In addition they are addressing new questions. Wara's immunology laboratory is looking at the unique immune reconstitution pattern of children: Once the HIV virus is under control, their immune systems seem to rebuild more briskly and to remain more robust than adults. "We don't know why, and we are asking those questions in the lab," Wara said.

Members of the group also are researching psychosocial implications of long-term survival for HIV positive children. For example, Tom Boyce, MD, is looking at the effects of stress on immune reconstitution of children as they enter kindergarten. And Susan Folkman, PhD, of the UCSF Center for AIDS Prevention Studies is evaluating how caring for children with HIV affects the caregiver. Part of Wara's message to pediatricians was aimed at those who have never seen an infant or child infected with HIV. "The future of AIDS still lies in prevention," she said. "That means pediatricians must be advocates for their adolescent patients, to help them think about their sexual choices and to make certain that they understand safe sex if they are sexually active."
-end-


University of California - San Francisco

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