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Part D: Continued

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Demonstration Grants Become Law

Ultimately, Title IV authorized demonstration grants to conduct clinical research on therapies for children and pregnant women with HIV and provide health care, case management, and support services for these patients and their families. Notably, Title IV was the only component of the act to fund services for non-infected family members. Although the program was integrated into law on passage, it was funded independently of the CARE Act through 1993. Congress transferred the funding for the demonstration program into Title IV in FY 1994.

As passed, Title IV included provisions that were never funded, including health systems research, evaluation at the Agency for Healthcare Policy and Research, and studies on HIV partner notification and HIV disease in rural areas.9

A Pivotal Moment in Perinatal Care

A pivotal moment in the history of Part D occurred when researchers were able to prove the efficacy of AZT in preventing mother-to-child transmission of HIV. Proof came in 1994 from a Federally funded clinical research protocol known as AIDS Clinical Trials Group study 076 (ACTG-076). Part D–funded programs, some of which had been involved in the research, seized upon those findings. As Assistant Secretary for Health Philip R. Lee, said at the time, “In response to these important findings about the use of AZT in the perinatal setting, these programs will also emphasize prevention and early intervention of women and their children, and the integration of HIV prevention and treatment into broader systems of primary care.”10 Ultimately, the programs played a leading role in reducing mother-to-child transmission of HIV—from as many as 2,000 babies born HIV positive in 1990 to roughly 200 cases in 200511,12

Predictably, the decline in perinatal transmission of HIV helped bring about a gradual but equally dramatic decline in the number of reported AIDS cases in all children under age 13 (see chart below). The declines can be attributed both to the efficacy of AZT and to aggressive efforts to reach out to pregnant women and their families through Part D programs.

View as a table
NUMBERS of AIDS CASES13* Children <13 Years Old
Year Number of Cases
1992 949
1993 921
1994 832
1995 695
1996 529
1997 349
1998 257
1999 203
2000 137
2001 132
2002 114
2003 74
2004 55
2005 52
2006 39
2007 27
2008 31

Reauthorization Expands Populations Served

In the reauthorization of the Ryan White CARE Act in 1996, Title IV changed from a demonstration project to a grant program. Rather than authorizing actual clinical research, as did the original act, the new provisions authorized funded programs to provide “opportunities for women, infants, children, and youth to be voluntary participants in research of potential clinical benefit to individuals with HIV disease.” This language also offered a more expansive definition of populations served, which had been listed in the original version of the bill as pediatric patients, pregnant women with HIV, and their families. The 1996 provisions removed specific reference to community health centers as potential grantees but maintained clear language that service models had to include outpatient health care; case management; inpatient referrals; and wraparound services, such as transportation and child care, to enable participation in the program.

Family-Centered Approaches

“Initially, the [Title IV] program was very focused on children who are HIV infected, but over the years it expanded to a family-centered approach,” says Scalco. “With the decline in perinatal transmission, the focus on the program has to be much more working with women, and especially pregnant women, to make sure they access testing and treatment and continue to work with the family unit, regardless of whether or not the child was infected.”6

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