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Beginning in 1993, the Ryan White HIV/AIDS Program Special Projects of National Significance (SPNS) program funded 10 models of adolescent HIV care through its a Adolescent Care Demonstration and Evaluation Initiative. The multiyear demonstration projects evaluated four categories of interventions, which included:3

  • Youth involvement
  • Outreach to bring youth into services
  • Case management and linkage to services
  • A comprehensive continuum of care for youth.

The findings from this initiative brought important revelations to the field of serving at-risk and HIV-positive youth. One of the most pivotal discoveries was the importance of involving youth as equal partners in all stages of program design, planning, and implementation. To attract young people as clients, programs needed to obtain substantial youth input. Conversely, because of their ages, young people often needed technical support to build and sustain a program.4

The SPNS Adolescent Initiative is only one example of how the HIV/AIDS community was focused on improving access to services for young people. There are many others. The Adolescent Medicine HIV/AIDS Research Network, for example, was funded by the National Institutes of Health in 1994 as a unique collaborative effort to examine HIV, hormonal variation, and effects of sexually transmitted disease comorbidities among HIV-infected youth to improve their health care. Among the youth-serving organizations that made up the network was the Children’s Hospital at New York’s Montefiore Medical Center, which opened the first-ever Adolescent AIDS Program Exit Disclaimer in 1987. The work of providers like Montefiore and its partners in the Research Network—many of whom were Ryan White HIV/AIDS Program grantees—highlights a defining principal of the HIV/AIDS services community: Providers don’t wait for those in need to simply walk through the door; they work with partners in the community to go out and find HIV-positive individuals not in care.

Throughout the first decade of the Ryan White HIV/AIDS Program, increasing knowledge and resources were brought to bear against the epidemic among young people. At the decade’s midpoint, two critical advances in the laboratory dramatically changed how providers would approach HIV/AIDS prevention and care in the future.

In 1994, findings from the AIDS Clinical Trial Group (ACTG) 076 revealed that perinatal transmission rates could be reduced by two-thirds when regimens of AZT (zidovudine) were administered to pregnant HIV-positive women and their infants.5 This breakthrough regimen would prove so effective in preventing HIV infection in newborns that perinatal transmission rates would drop to zero in some Ryan White HIV/AIDS Program settings.6

The second major development had to do not with preventing HIV infection but with treating it. Tested in 1995 and widely utilized by 1996, HAART marked a dividing line separating past and present in the treatment of HIV. Before, treatment options had been severely limited. To say that HAART brought hope is not entirely accurate, however, because it indicates that hope did not exist before HAART was introduced. The truth is that the HIV/AIDS community had always been driven by hope. The difference was that after HAART the community was driven by something even more powerful: a real and tangible opportunity to forestall the progression of HIV disease.

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