“There seemed to be a big change after that,” Pierce recalls. “Shortly after, doors opened up for us and suddenly the hospital administration asked us how they could better support us. That’s when they gave us a dedicated space in Kober-Cogan.”
Through the clinic, Father Sal Jordan and Peggy Magee set up one of the hospital’s first patient support groups. The Georgetown staff who volunteered there were an exceptional group, says Father Sal.
“A lot of it was on the quiet side without much publicity or anything. I always considered it my most essential work as a Jesuit. I was very fortunate to work with the nurses, doctors, and social workers through the HIV clinic—how loving they were, and nonjudgmental.”
Societal judgment around being a heroin user or being gay had an outsized negative impact on research and care for people with the sexually transmitted disease, says Curry.
“We lost a decade due to stigma. In the 90s we were dealing with the fallout from the 80s,” she explains. “There was this false sense of security in the early years because people heard and read that only certain groups were at risk. People would see those categories, and when they did not see themselves on the lists, they would believe themselves not to be at risk and also that it was not their concern.”
“And we live with the legacy of that still.”
Curry recalls the many times patients begged them to not document anything that would reveal they had HIV, including one high-ranking government official who planned to tell everyone that he had TB. “He thought that was more acceptable. Don’t put HIV on my death certificate, he said.”
As if the disease itself weren’t devastating enough, the stigma around how it was acquired made it far worse, says Curry. “Living with that level of fear of discovery evokes a lot of negative entropy, in terms of someone ever achieving a sense of wellbeing.”
Helping Families in Turmoil
Many families struggled as their sons quickly declined in health and often at the same time revealed their previously private sexual identity.
“I remember one whose father was a top lawyer in his hometown, mother a nurse, an aunt a nun,” says Father Sal. “Their son’s illness created lots of turmoil for them. He didn’t even want to go home for Thanksgiving.”
Father Sal convinced him to go and reconcile with his conservative Catholic family, and agreed to accompany him and help bridge the divide.
“He had just a few months left to live and had lost a lot of weight. We drove home to his family an hour away and spent Thanksgiving there with them. My presence was a big help to him and to his family, just by offering understanding and support. A month later he died in a Washington hospice care facility about 3 in the morning, and his family called me to be with them at his bedside. I was glad they were reconciled.”
“Far too many people had been banned from families once their diagnoses were known,” says Curry. “They wanted to be with nieces and nephews again but were forbidden to touch them.” For some, they were invited to family occasions but were seated at a separate table alone, with disposable plates and cups.