Ryan White CARE Act Title IV programs: a preliminary characterization of benefits and costs

Congress enacted the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act in 1990 to address the unmet health needs of persons living with HIV (PLWH) by funding primary healthcare and support services to enhance access to and retention in care. The CARE Act was amended and reauthorized in 1996 and in 2000, and again in December 2006. As originally enacted, the CARE Act was a compromise across a wide political divide. A structure was established that distributed Ryan White CARE Act (RWCA) funds through five federal titles, with different parameters set for each title. Some funds were placed under federal control, while others were controlled locally and distributed to cities and states. Some funds were earmarked for specific services or populations, such as medications; others could be assigned according to a community's priorities. Title IV, the section of the RWCA dedicated to serving women, children, youth, and families who are infected with and affected by HIV/AIDS, is unique, even given the diversity of the other titles. The Title IV program was first implemented in 1988 as the Pediatric AIDS Demonstration Program. It became part of the CARE Act in 1994, and its purpose was expanded at that time to create better links between medical and support services. Although it is the smallest of the titles, with less than 4 percent of the RWCA budget, it may have the broadest mission: providing medical, logistical, psychosocial, and developmental care not just to persons living with the virus, but to entire families. In addition to its focus on this target population, Title IV is unique in its recognition of the need for, and historic support of, comprehensive systems of care to improve, expand, and coordinate service delivery, HIV-prevention efforts, and clinical research. Title IV was excluded from a 10 percent administrative cap on administrative expenses, which enables its funded programs to accomplish this mission. As of 2003, Title IV supported 74 family projects in 34 states (including Puerto Rico, the District of Columbia, and the Virgin Islands), which was a 28 percent increase in funded grantees and a 35 percent increase in participating states since 1999. However, the program's expansion was not matched with a comparable examination of its impact. Rather, the U.S. Health Resources and Services Administration (HRSA), the agency responsible for administering the RWCA, has focussed its evaluation interests on developing goals to use in evaluating its overall RWCA program and in evaluating shorter-term demonstration projects that have more-limited goals. Previous assessments of HIV/AIDS provider networks have examined the following: The process of network development and the determinants of successful implementation, The feasibility of collecting data from network providers, and The mechanisms of agency collaboration and care coordination at the provider level. Only recently has HRSA begun work on developing theoretical frameworks that are useful in exploring the relationships between network characteristics, participating providers, and clients' health and psychosocial outcomes. An examination of Title IV projects is appropriate for a number of reasons. No systematic study of the program has been published to date. Knowledge of the organization of Title IV projects, as well as the services they provide, will improve policy makers' understanding of the range and importance of the strategies that Title IV programs use to meet the needs of the populations they serve. Moreover, as the demand for RWCA funding grows, Title IV projects could offer a model for the efficient deployment of scarce resources.