Mark Litwin, a surgeon in training at Harvard's Brigham and Women's Hospital at the start of the epidemic, says that AIDS patients routinely received substandard care. "I'm ashamed to admit it, but discrimination [does] occur. If a person [diagnosed with AIDS] might benefit from an operation, you [thought] twice or three times or decide not to operate.”21
Where there was suffering and a lack of government leadership and public resources, concerned providers and activists joined forces with patients and their friends, parents, and partners to develop systems of care for those living with and affected by HIV/AIDS.22 As one 56-year-old gay man living with HIV remembers, “Doctors wouldn’t try to keep us alive and undertakers wouldn’t bury us when we died.” But with that loss and anger came hope. Without anyone to help, “we created our own patchwork network of care.”
The community-based response to AIDS included a diverse range of medical personnel, policy makers, faith-based leaders, and others concerned about mitigating the impact of the epidemic on those living with and impacted by HIV.
Bolstering That Patchwork or The “H” in “HIV” Does Not Stand for Homosexual
The misinformation and stigma around HIV, and the inadequate care delivered to gay men in the early days of the epidemic exposed the dearth of culturally competent disease treatment and population-specific systems available at that time. Health care workers and social support staff who cared for people living with AIDS found themselves recast as leaders, advocates, and activists in this unprecedented health crisis. Their work answered the 1983 clarion call of the Denver Principles, which challenged everyone to support people living with HIV/AIDS in their “struggle against those who would fire us from our jobs, evict us from our homes, refuse to touch us or separate us from our loved ones, our community or our peers” and “not scapegoat people with AIDS, blame us for the epidemic or generalize about our lifestyles.”23
Moreover, the individuals behind this “patchwork network of care,” whether they knew it or not, were creating the foundation for what would become the Ryan White HIV/AIDS Program and were themselves future Ryan White providers and HAB administrators. They understood the power of compassion and cultural understanding and were creating the beginnings of what would eventually become a legacy of comprehensive care and the Nation’s largest AIDS-specific Federal program.
One heroic provider at the start of the epidemic was Helen Miramontes, who cared for AIDS patients at Kaiser Permanente Santa Clara in the early 1980s, and developed one of the first train-the-trainer programs addressing the need for cultural competency in HIV/AIDS care. The course provided nurses straight-forward information about HIV/AIDS, addressing the role of stigma, ignorance, misconceptions, and intolerance in undermining service delivery and the work toward an AIDS cure. She explained the course’s direct approach by saying, “You don’t change attitudes with slides and didactic lectures.”24
Miramontes furthered her efforts on the advisory committee of the Western AIDS Education and Training Program, a precursor of the national Ryan White AIDS Education and Training Center (AETC) program, and as president of the California Nurses Association, staring down employers, insurance companies, and even other health care providers who failed those living with HIV. In 1986, medical professionals joined her in opposing California’s Proposition 64, a ballot initiative proposed by the aptly named PANIC or Prevent AIDS Now Initiative Committee that called for AIDS to be treated as a disease subject to quarantine.25 U.S. Surgeon General George C. Koop declared the initiative dangerous to patients, driving them underground "out of the mainstream of treatment and out of the mainstream of education.”26