Women who came into physicians’ offices and clinics were at risk for being misdiagnosed. Throughout the epidemic, a misunderstanding of the risks for and manifestations of HIV/AIDS in women has contributed to late diagnosis of the disease. Many HIV-infected women have discovered their status only after having sought prenatal care.
First Federal AIDS Program
As more women were infected and sought out care, it became clear that there were not enough community-level resources available to help address their special needs. A Federal-level intervention was needed. In 1986, HRSA launched the AIDS Service Demonstration grants, the first Federal AIDS care program and one of the first national AIDS-specific programs in the country of any kind. At $15.3 million, the program offered much-needed support to cities hit hardest by the AIDS epidemic. These early grants later became the foundation of Part A funding in the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act.
Although the proportion of infections among women was much lower than it is today, women were nevertheless eligible to be served through the AIDS Service Demonstration grants. Many of the cities receiving the first grants, however, were overwhelmed by the needs of gay men, and that population was the primary focus. Moreover, the size of the grant for each city was small, and few programs had yet been conceived to deal with the needs of women of childbearing age—let alone their HIV-infected children.
Though the first reported cases of possible HIV transmission from mother-to-child was in December 1982, women of childbearing age continued to face significant stigma as the numbers of infected children slowly rose during those early years.12
HIV-positive children were most often born to severely overburdened families. Some infants were abandoned in hospitals, and few foster care arrangements were available for babies who were being orphaned by the epidemic.
Thus, the Pediatric AIDS Service Demonstration grants, first awarded in 1988, represented a giant leap forward in the care of women and their families. These grants responded to many harsh realities.
Approximately $4.8 million was appropriated during the first year of the program where 13 grantees were awarded funding and rose to $20.9 million in FY 1993 with 25 grantees. The Pediatric AIDS Service Demonstration grants made a whole new level of care available to families—especially to children. They successfully addressed the unique needs of women and children and gave the Nation a model for developing programs in new locations. Ultimately, these grants became the framework for Title IV (now Part D) program for women, children, infants, and youth.
The programs receiving funds approached women with a degree of cultural competency that had not been previously seen. They reflected that women experience gender roles and sex and sexuality differently from men. The programs also took into account that women’s level of education, fear of physical abuse and, more generally, gender inequality in relationships are all factors in seeking and staying in care.13,14 (See the HRSA CAREAction newsletter on this topic.)
These new programs also reflected that many HIV-positive women are mothers struggling to take care of themselves and their children. For them, having HIV/AIDS is just one more overwhelming problem to deal with, behind providing food and a place to live for their children; keeping the lights on; and, often, other medical issues, such as diabetes, mental health issues, substance abuse, and even managing the health needs of a child who was born with HIV.