In 1993, researchers reported that resistance to AZT could be transmitted.74 Within a few years, it was clear that resistance to all three classes of antiretroviral drugs could be transmitted, leaving some newly-infected people with limited or no treatment options.75,76,77,78
Once again, technology produced useful tools for guiding HIV treatment decisions: genotypic and phenotypic resistance testing. Genotypic testing could detect mutations in HIV that were associated with drug resistance, whereas phenotypic testing measured the concentration of drug needed to stop HIV from growing. Both tests had limitations: They were expensive, were difficult to interpret, and could miss drug-resistant strains unless they comprised more than 20 percent of the virus that happened to be circulating in a person’s body when blood was drawn. Initially, use of genotypic and phenotypic testing was recommended in the context of drug failure and for pregnant women, although researchers began to recommend their use for acute HIV and before initiating ART.75,78,79,80
Because results from genotypic and phenotypic testing often required expert analysis, AETCs stepped in with vital resources for Ryan White grantees. They offered onsite trainings, curricula, slides, and fact sheets. The resources incorporated the latest scientific data with guidance for implementing it, including consideration of patient-specific cultural, sociodemographic, cognitive, and psychiatric factors. In California, from 2000 onward, the Positive Health Program at San Francisco General Hospital and the Warmline/National Clinicians’ Consultation Center reviewed challenging cases and made treatment recommendations. Case reports from the HIV resistance testing consultation panel are available online.
The first HIV PIs to be brought to market saved countless lives but had some significant limitations, such as side effects, long-term toxicities, drug-drug interactions, and resistance. It was clear that new drugs were needed that were effective against drug-resistant virus and were more tolerable and convenient.
In the meantime, Ryan White grantees maximized the available weapons to fight HIV and AIDS. Having more effective drugs and tests to track disease progression and response to treatment was not enough. Getting these resources to the people who needed them most, by any means possible, was required. Making sure that people were ready to start ART and that they understood how the drugs worked, the possible side effects and strategies for management, and the importance of adherence involved far more than having a brief conversation or handing someone a brochure. It meant meeting people where they were. “Ryan White brought a different, more comprehensive patient- and family-focused model,” says Aranda-Naranjo. “Many of the women we were serving had been living in poverty before HIV hit them. Employment, housing, and domestic violence were major issues. We saw the whole person, not just the biological aspect. If people didn’t come to our clinic, we went to them,” she explains.
Hurricane Katrina and Ryan White
More than 20,000 HIV-positive people were evacuated from areas affected by Hurricane Katrina. HRSA encouraged programs to waive their usual eligibility criteria, including the need for medical records, so that evacuees did not have to interrupt their HIV treatment. Within a month, 1,500 evacuees had been served by Ryan White providers in other States.