Renewing the Commitment: The 2005 Reauthorization of the Ryan White CARE Act

About Title IV Grantees

In fiscal year 1988 -- "greatly concerned with the increase in the number of pediatric AIDS cases"¹⁵ -- the Senate set aside $5 million for demonstration projects to treat pediatric AIDS. These grants were known as the Pediatric AIDS Demonstration Projects.

The goal of these projects was to develop care and treatment models for children with AIDS, as well as HIV-positive pregnant women and their families. Another impulse in their development was the lack of participation in clinical trials by women and children.

Every year, as the Senate predicted, the number of children with HIV/AIDS grew, and the need for specialized services increased. In 1994, Congress funded these projects under Title IV of the CARE Act, and, in the 1996 CARE Act reauthorization, they were formally incorporated as Title IV. Additionally, Title IV projects were instructed to help enroll women and children in clinical trials and have been successful in that endeavor.

At present, Title IV funds 91 grantees in 35 states, the District of Columbia, Puerto Rico, and the Virgin Islands with $72.5 million. These grantees provide comprehensive, family-centered care to women, children, youth, and families. Seventeen of these grantees are specially focused on case-finding and enrolling in care HIV-positive adolescents and young adults (ages 15-24). Grants are awarded to many different kinds of institutions, including universities and hospitals, community health centers, and community-based and faith-based organizations. Title IV grant awards range in value from $250,000 to $2.3 million.

Title IV is the only title in the CARE Act that is allowed to provide services to uninfected family members of HIV-positive people -- AIDS affects the entire family, not just the infected family members. This is especially true when a parent has HIV. That's why Title IV grantees consider the entire family to be the client. In 2001, of the more than 21,000 affected family members needing medical and support services from Title IV, over 14,000 were infants and children of HIV-positive parents.¹⁶

Title IV grantees usually use a network of providers to meet the needs of women, children, youth, and families. This means that the grantee of record may subcontract services such as medical care, case management, childcare, and transportation, while retaining responsibility for financial oversight, management, and quality of care.

Family-Centered Approaches to Care

Family-centered care -- an approach to providing comprehensive, coordinated, and culturally competent care and services -- has been the successful foundation of the Title IV program from its earliest conception as the Pediatric AIDS Demonstration Projects in 1988. Family-centered care is built on partnerships and collaboration between consumers and providers of care and encourages and supports consumer participation in all levels of the care system.