1994: Preventing a Killer
Countless lives were saved by the January 7, 1994, approval of bactrim as prophylaxis against pneumocystis pneumonia (PCP), a serious opportunistic infection occurring in 70 to 80 percent of AIDS patients. PCP was a leading cause of death in the pre-HAART era; the fatality rate ranged from 20 percent to 40 percent.11 Since then, the incidence of PCP has plummeted in the United States as a result of earlier initiation of HIV treatment and use of prophylaxis in people with severe immunosuppression.12 Now, the bulk of PCP cases occur in people who are unaware of their HIV status, who are out of care, or who have a CD4 cell count of <100 cells /uL.13
1994: Preventing Mother-to-Child Transmission
On February 21, 1994, a breakthrough was announced: Interim results from the Pediatric AIDS Clinical Trials Group (ACTG) study 076 found mother-to-child transmission (MTCT) of HIV could be prevented. When AZT was given to HIV-positive pregnant women and their infants, transmission dropped from 25.5 percent to 8.3 percent (a 67.5 percent reduction).14 Previously, the rate of MTCT ranged from 15 to 40 percent.15,16 “The beautiful thing about ACTG-076 was that it was the first evidence-based, scientific study with good news,” says Travieso Palow.
From the beginning, Ryan White HIV/AIDS Program staff and grantees worked to quickly disseminate research findings and translate them into clinical practice. Program staff participated in the development of U.S. Public Health Service (PHS) recommendations, released in August of 1994, for AZT use to prevent MTCT and of the subsequent recommendation for voluntary HIV counseling and testing for pregnant women, released in 1995.17,18 At the same time, HRSA issued guidance on reducing MTCT, thereby providing grantees with strategies to implement the PHS recommendations. To further extend their reach, HRSA also began to support onsite and online technical assistance for clinic staff through the National HIV Pediatric Resource Center. Continuing those efforts, Ryan White funding supports the national, 24-hour perinatal HIV hotline, where clinicians can get advice and referrals to local specialists.
“HIV/AIDS is the best example of translational research,” says Barbara Aranda-Naranjo, director of HAB’s Division of Service Systems. “Results from ACTG-076 were brought to the most affected communities almost instantly because we had immediate access to the patients.” The Ryan White HIV/AIDS Program staff made huge efforts to ensure that HIV-positive pregnant women could understand and benefit from the ACTG-076 study. They did more than deliver care—they built a community.
“After ACTG-076, we were pushing for pregnant women to know their HIV status and begin AZT to prevent babies from getting HIV,” explains Travieso Palow. “It was difficult because AZT made many pregnant women feel sick and gave some of them anemia. In South Florida’s Haitian community, this fueled rumors that AZT was poison,” she adds. To counter misinformation, “Our Haitian staff members went on the radio to get the message out that AZT was not poison and that it could prevent babies from contracting HIV,” says Travieso Palow. This kind of community based, culturally appropriate outreach and education has been a hallmark of the Ryan White HIV/AIDS Program. Travieso Palow recalls,
We became the family of choice for many HIV-positive Haitian, Latina, and African-American pregnant women who were rejected when they disclosed their HIV status to family, friends, or partners. They had no support system. They knew we would maintain their confidentiality and that our nurses, social workers, and case managers were there to provide support. I can’t tell you how many times we stayed very late and made follow-up calls. We watched these women become empowered through talking with each other at our support groups. Some became advocates.
By 1996, the number of perinatally infected children dropped to 480 from a peak of 1,650 in 1991.19,20 In the United States, perinatal transmission has continued to decrease: As of 2009, 131 cases were reported.21 “On average, it takes 17 years to get research directly into practice as the standard of care,” explains Feit. “The HIV/AIDS Bureau has consistently translated advances in the field so quickly; ACTG-076 was a matter of months. Whatever the timeline is, HAB does it faster.”