For example, in the first reauthorization of the Ryan White CARE Act in 1996, Congress added a provision for small planning grants to help sites develop services and qualify for funding. In the 2000 reauthorization, this was expanded to include larger capacity development grants (PDF – 222 KB). In both cases, preference was given to rural and underserved communities.16
The new funding allowed rural clinics to open throughout the Nation and enabled existing clinics in urban areas to expand their reach into surrounding areas. With the arrival of clinics and other medical services, PLWHA in rural areas gained greater access to HIV care as well as more opportunities to meet others infected with the disease. This gave them a source of support they might not have found otherwise while living in a remote location.
HAART Changes Everything
In 1996, highly active antiretroviral therapy (HAART) became available, eclipsing the positive impact of AZT. Involving a combination of drugs, HAART was the most effective and consistent way to treat HIV/AIDS to date and quickly became a lifesaver for PWLHA in communities across the country. What’s more, the reauthorization of the Ryan White CARE Act the same year marked the beginning of the AIDS Drug Assistance Program (ADAP), formerly the AZT Drug Reimbursement Program.17 Funded through Part B, ADAP enabled States to make HARRT more widely available in many rural communities. Thus, the development and release of HAART would serve as a watershed moment in the AIDS fight.
“I think there was a whole Lazarus effect,” says McCarthy. “People who were at death’s door all of the sudden weren’t anymore.”
According to McCarthy, to spread the word about HAART some States distributed information to providers when they renewed their State licenses. Public health workers often turned to cooperative churches to encourage rural PLWHA to engage in care. And in many cases, clinicians themselves tried to spread the word, knowing that community leaders were unlikely to do so.
Dr. Donna Sweet of the Mountain-Plains AETC discusses patient care with a clinician.
“It was up to our employees to [share information about the life-saving drugs], because it wasn’t going to happen on a communitywide basis,” says Nancy Young, program director of Special Health Resources of Texas (SHRT) in East Texas.
In Kansas, the Mountain-Plains AETC took on the task of educating area physicians about the impact of HAART. According to Dr. Donna Sweet, principal investigator at the Mountain-Plains AETC, the organization had already established relationships with many local clinicians during its efforts in 1994 to educate medical professionals about using AZT to prevent mother-to-child transmission. When the new antiretroviral drugs arrived, Dr. Sweet and others were able to leverage these relationships to spread the word. Ultimately, the Mountain-Plains and other AETCs served as a vital link between the Federal Government and local communities.