Study shows how time runs out on teenagers with HIV after a decade or more undiagnosed

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A study examining what happened to adults and teenagers who had been diagnosed with HIV, had come to a clinic for care and were waiting to begin antiretroviral treatment found that of those who died during that wait, the death rate among adolescents — those patients between the ages of 10 and 19 — was double that of adults. The study found the great majority — more than 95 percent — of the teenagers were born with HIV or infected through breast feeding, and had been living undiagnosed for a decade or more. They were sicker when they arrived for care, had less time to lose, but waited longer to begin treatment. The reasons for that wait were largely avoidable, according to the authors, with a required period of pre-treatment counseling introducing additional delays that the authors indicate could be shortened with improved coordination of services. The findings highlight failures of HIV testing services to find and diagnose children, of treatment programs to provide timely care, and a need to follow up with patients who have enrolled for care but not yet begun antiretroviral treatment, the authors note.

The study, described in a recent Journal of the International AIDS Society, looked at outcomes of  1,628 adolescents and 11,106 adults enrolled for HIV care between 2004 and 2010 at the same urban Zimbabwe clinic — the only one in the nation’s second most populous city to provide antiretroviral treatment to children and teenagers during the six years studied. Patients were eligible to begin antiretroviral treatment in Zimbabwe then when their immune cell, or CD4, count had dropped to or below 200 cells per cubic liter of blood or when they exhibited symptoms, including opportunistic infections and extreme weight loss, that met the World Health Organization’s definitions of stage III or IV illness. While 83 percent of the adolescents met that criteria, as opposed to 73 percent of the adults, teenagers had a wait a median of six days longer —  from 10 to 55 days to start antiretroviral treatment than adults, who had a wait of seven to 42 days. Among 138 adolescents who never began treatment at the clinic, 39 died. The rest, having missed their next scheduled appointments by three or more months were categorized as lost to followup. Among the 942 adults who never began treatment, 135 died. That meant 28 percent of the teenagers who never began treatment at the clinic died while 14 percent of the adults died.

The authors note that while more adolescents had more advanced stage illnesses than adults by WHO clinical criteria, they also tended to have higher CD4 counts, indicating reason to consider raising the threshold number for adolescents infected at or around birth starting treatment.

The authors also note that while HIV testing service provision was increased during the period studied, those added services were almost exclusively available to adults. Most adolescent HIV testing, by contrast, took place after hospitalization for an illness. The authors call for new approaches to reach older children and adolescents with testing, and then to connect them to care and treatment, and conclude that their findings highlight the vulnerability for adults and children of the period between the time when patients are diagnosed with HIV and when they begin treatment to control the virus.

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