The Missing Cohort of the AIDS Epidemic

A new policy report from Advocates for Youth reveals that HIV-positive youth are largely ignored by the President's Emergency Plan for AIDS Relief (PEPFAR).


The major challenges we face as young people are similar to those faced by young people all over the world: peer pressure, surviving in a changing world, and coping with our growing minds and bodies. The major difference is that we happen to be HIV-positive … thus facing more challenges, which are stigma and discrimination, loss of parents or having single parents, lack of education due to poverty or no support, being abused, defiled, and denied many rights.

Brian Nganwa, 15-year-old HIV-positive youth, Uganda

You've heard the statistic countless times. Every day, more than 6,000 young people become infected with HIV. Last winter, as it rolled off my tongue again, I stopped with a start. I realized that I, and the entire AIDS community, have been using that statistic for years. And yet, we continue to discuss young people in the context of prevention without acknowledging the fate of the 6,000 who are infected each day. What happens to them after we use them in our statistics to force policy-makers to invest more in prevention? Who is advocating for their needs?

As I explored this issue, I learned that the statistics are difficult to come by because of a lack of age-desegregated reporting in most countries and because of youth's low use of voluntary counseling and testing (VCT). For example in Ethiopia in 2005, less than two percent of young women ages 15 through 24 had been tested for HIV. Data is better for those who are known to have been infected perinatally (during pregnancy, delivery, or birth or through breastfeeding). The widespread roll-out of antiretroviral therapy has led to many children living with HIV transitioning into adolescence.

Advocates for Youth decided to investigate how, or even if, HIV-positive youth were being served in the President's Emergency Plan for AIDS Relief (PEPFAR). We found that while PEPFAR was making some gains in reaching children living with HIV through treatment, by and large, the needs of adolescents had been ignored.

HIV-positive adolescents are scantly mentioned in PEPFAR's policy on orphans and vulnerable children (OVC). The policy references HIV status only as an additional risk factor instead of acknowledging the different needs of an HIV infected child or adolescent. The OVC policy guidance also overwhelmingly assumes that most OVC are HIV-negative, an incorrect assumption.

Additionally, there is a myth that most OVCs are small children although nearly half of all orphans who have lost one parent and two-thirds of those who have lost both parents are aged 12 through 17. As orphans grow older, they face higher risks of acquiring sexually transmitted infections, including HIV, than do non-orphans. Yet, PEPFAR OVC programs and policies do not acknowledge orphans' age or vulnerability.

PEPFAR also pays no attention to positive prevention for those youth who are infected. Positive prevention includes strategies that increase youth's self-esteem and confidence; support youth in protecting their own sexual health and in avoiding infecting others; and that involve HIV-positive youth in planning and implementing HIV strategies and policies. Nor does PEPFAR acknowledge that reproductive health services and comprehensive life skills education are critical for positive prevention.

If PEPFAR does not equip youth living with HIV with the tools they need to stay healthy and keep their potential and future partners free from infection, then countless new infections will occur. Programs and policies must be developed to help this critical population transition from childhood to adolescence and then to adulthood.

For an in-depth analysis of the needs of HIV-positive youth and how PEPFAR is failing this population, read Advocates for Youth's new policy publication, Improving U.S. Global AIDS Policy for Young People: Assessing the President's Emergency Plan for AIDS Relief.