Is There an Optimal Age at Which to Disclose HIV-Positive Status to Youth? Study Says Yes


Of the 1.8 million youth living with HIV around the world, the United States is home to 2000, and many were infected perinatally.

Study results published in BMC Research Notes indicate that the optimal age at which to disclose HIV-positive status to youth may be between 10 and 12 years. One reason is because children at this age are still dependent, for the most part, on their caregivers, the study authors point out.

The United States alone has close to 2000 youth living with HIV (YLWH), and there are 1.8 million worldwide younger than 15 years. Many were infected perinatally, in that the infection passed from their biological mother around the time they were born.

Recommendations from the World Health Organization (WHO) and the American Academy of Pediatrics (AAP) conflict in that the WHO thinks YLWH should learn of their HIV-positive status from 6 to 12 years, whereas the AAP uses the generic “school age.” Because neither recommends the optimal age at which to notify younger persons they have HIV, the authors of the present study set out to determine just that, with the ultimate goal that viral suppression is a public health priority because it helps to prevent the spread of HIV.

For this study, the authors defined viral suppression as a laboratory-confirmed HIV RNA plasma viral load less than 200 copies/mL. This measure was evaluated around the time of each patient’s birthday from ages 14 through 18 years. If 80% of these results indicated viral suppression, that meant the patient was virally suppressed for the study.

The retrospective analysis study utilized data extracted in 2019 on YLWH with at least 1 viral load on record who were infected perinatally between 2008 and 2018 in the southern United States, received care at a pediatric HIV clinic there, and knew their positive status. They were divided into 3 age groups:

  • Younger than 10 years (children; n = 9)
  • Between 10 and 12 years (preadolescents; n = 26)
  • Age 13 years and older (adolescents; n = 19)

Results showed that 73% of the study participants were determined to be HIV-positive before their first birthday, but most were not aware of their status until the age of 10. More than half were female, 66% were black or African American, none identified as transgender, and 40% were adopted.

Additional results indicated the following:

  • Black patients had a lower rate of viral suppression compared with white patients: 75% vs 41% (P = .04)
  • Adopted children, compared with biological children, were more likely to be virally suppressed: 71% vs 44% (P < .05)
  • Preadolescents had the highest rate of viral suppression after they were told of their HIV status, followed by children and adolescents: 65%, 56%, and 38%, respectively.
  • Black YLWH were less likely to achieve the 80% mark compared with the total cohort (41% vs 71%; P = .02 ) and white YLWH (41% vs 75%; P = .04)

“Our preliminary findings suggest that disclosing HIV status between 10 and 12 may promote viral suppression through medication adherence,” the authors concluded. “Youth at this age are more likely to comprehend medical explanations and health care considerations related to living with HIV and how HIV status may influence social relationships compared to younger peers.”

Study limitations include the small sample size and that age of disclosure was self-reported.


Budhwani H, Mills L, Marefka LEB, Eady S, Nghiem VT, Simpson T. Preliminary study on HIV status disclosure to perinatal infected children: retrospective analysis of administrative records from a pediatric HIV clinic in the southern United States. BMC Res Notes. Published online May 24, 2020. doi:10.1186/s13104-020-05097-z

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