The javascript used on this site for creative design effects is not supported by your browser. Please note that this will not affect access to the content on this web site.

Program Origins

PART A

Eligible Metropolitan Areas/ Transitional Grant Areas

The first HRSA-funded AIDS Service Demonstration Grants, in 1986, brought care to four urban centers. By 1991, when Title I (now Part A) programs began, the number of cities receiving funds had increased fourfold, to 16.

Read more...

PART B

States and Territories

Part B grew into the largest component of the Ryan White HIVAIDS Program primarily as a result of increases in funds to support access to drug therapies. More than 175,000 people received medications through the AIDS Drug Assistance Programs in 2008.

Read more...

PART C

Early Intervention Services

Direct grants to primary care providers have been funded from the time Ryan White CARE Act legislation first passed. The number of sites has grown significantly, from 114 in 1991 to 357 in 2008.

Read more...

PART D

Services for Women, Infants, Youth, Children, and Families

Title IV (now Part D) 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 2005.

PART F

SPNS, AETCs, Dental, and MAI

In 2008, more than 70 percent of Ryan White HIV/AIDS Program clients self-identified as racial or ethnic minorities. Through Part F, the Minority AIDS Initiative has played a major role in eliminating disparities in HIV/AIDS care for these populations.

Read more...

previous page next page

1 of 3

Part D: Women and Families in a Circle of Care

Circle of Care in Philadelphia inaugurated an annual Arbor Day celebration in 1990, planting a tree each year in honor of a child with HIV/AIDS who had received services from the agency and died during the previous year. “It’s a beautiful grove,” said Circle of Care’s Alicia Beatty, who noted that celebrations continued for 10 years until the first year the agency did not lose a child.1

Part D of the Ryan White HIV/AIDS Program has played a key role in the development and provision of the health care and support services at Circle of Care and dozens of other agencies and institutions that focus on women, infants, children, and youth living with and affected by HIV. Like most other components of the program, Part D has its roots in an initiative that predated passage of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act.

Origins of Part D

“Greatly concerned with the increase in the number of pediatric AIDS cases,”2 Congress first acted to address pediatric cases in 1987 by providing $5 million for the Pediatric AIDS Demonstration Projects in the FY 1988 budget. At the end of 1987, 737 pediatric AIDS cases had been reported to the Centers for Disease Control and Prevention, up from 410 cases at the end of 1986.3

It was also a time of stigma and discrimination faced by children and families. Beatty recalls that one of the first HIV-infected babies buried in Philadelphia was buried in a Styrofoam cooler because none of the local funeral directors wanted to take the body. A primary architect of the demonstration program was Senator Arlen Specter (R-PA), who played a role in drafting the guiding legislative language.4

Addressing Unique Needs of Women and Families

The goal of the demonstration project, which originally supported 13 programs, was to develop care and treatment models for children with AIDS and HIV-infected pregnant women and their families as well as to enhance the participation of women and children in HIV-related clinical trials.5

The program was housed at HRSA’s Maternal and Child Health Bureau. From the outset, it was designed to address the unique needs of women living with HIV/AIDS and their children and families. Parents living with HIV must manage their own care while caring for their children. Coordinating child care, transportation, and medical and social service appointments can present major challenges, especially for single parents or if a child or partner is also infected. Children living with HIV/AIDS also face a range of special issues, including delayed growth and development, mental health needs, and the unique side effects of HIV medications on children, among others.5

Speaking of her experiences in the program’s early days at Children’s Hospital in New Orleans, Beth Scalco says, “When I started working in the pediatric AIDS program, we did not have AZT [zidovudvine], and we were seeing 25 percent of women with HIV passing the virus to their children. We were seeing really sick children and children who died very quickly. A lot of our work was also trying to keep a child in a family, trying to help moms who were sick to have the support they needed to care for their kids, trying to place kids in foster care and with other relatives.”6

Pioneering Work of Elizabeth Glaser

The inclusion of the demonstration project in the Ryan White CARE Act in 1990 was largely the result of the efforts of Elizabeth Glaser, founder of the Pediatric AIDS Foundation.7 Glaser was a vocal advocate for investments in research on therapies to prevent mother-to-child transmission of HIV and to treat infected children. At the time, Representative Henry Waxman (D-CA) was leading efforts to pass the CARE Act in the House of Representatives. At the suggestion of Waxman’s staff members, Glaser enlisted Representative Norman Lent (R-NY), a key Republican on the Energy and Commerce Committee, to build stronger bipartisan support for the bill. Lent became an advocate for the bill and took the lead on pediatric provisions during the House debate.8

previous page

Previous

 

1

2

3

 

Next

next page

 

 

Back to Top