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As the epidemic advanced in the coming years, it became hauntingly apparent that young people were just as vulnerable to HIV infection as everyone else. Looking back on the first years of the epidemic, the CDC estimated that by the end of 1993:1

  • A total of 13,890 AIDS cases had been reported since the onset of the epidemic among people who were 20–24 years old at time of diagnosis.

  • An additional 54,593 AIDS cases had been reported in people who were 25–29 years of age at time of diagnosis.

Given the long period—10 years or more—that can pass between HIV infection and development of the symptoms associated with AIDS, it was apparent to all that many of these young adults had become HIV-infected during adolescence.2 Moreover, these AIDS data told only part of the story: They said nothing about the numbers of individuals living with HIV disease who did not know it. Where were these individuals? Why weren’t they in care?

Youth and the Ryan White HIV/AIDS Program: The Early Years

During the first years of the Ryan White HIV/AIDS Program, funded through the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act of 1990, the most significant portion of funding was distributed through Title I (now Part A) to heavily affected urban areas and their surroundings, defined in the legislation as eligible metropolitan areas, or EMAs. Along with grants to states and territories (Part B), these funds were used to respond to what was considered a care emergency. AIDS service and community-based organizations were overwhelmed by the sheer numbers of individuals requiring care and by the staggering level of need. In today’s age of highly active antiretroviral treatment (HAART), it is difficult for those who were not around back then to fathom the tragic level of suffering, decline, and ultimately death that defined the impact of HIV/AIDS at that time.

These first programs were not intentionally exclusive of anyone but the vast majority of individuals served through Titles I and II (now Parts A and B) were adults, and often men who have sex with men (MSM). At the time, youth services were delivered through Pediatric AIDS Service Demonstration Grants that, like the Ryan White HIV/AIDS Program, were 1) administered by HRSA and 2) specifically for people living with HIV (PLWH). The grant program began in 1988 with $5 million in funding to support organizations in the cities hit hardest by the HIV epidemic, and enabled the development of desperately needed programs and resources to respond to the needs of HIV-positive children and their families.

Though not exclusively, the grants’ initial focus was on perinatally infected children and their families, representing the only component of the CARE Act to fund services for non-infected family members. While Title IV (known today as the Part D program for women, infants, children, youth, and their families) authorized the Pediatric AIDS Service Demonstration Grants to conduct clinical research on therapies for children and pregnant women, the grants were funded independently of the CARE Act through 1993.

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