In the early '80s, a group of nurses and volunteers at San Francisco General Hospital got to work to create what would become the only special care unit for AIDS patients in the entire United States, called Ward 5B. At the time, the disease epidemic that would later be classified as HIV/AIDS was raging. Patients felt isolated and alienated. Healthcare professionals were riddled with fear of contracting the mysterious and devastating disease, and some refused to care for patients altogether.
This was absolutely unacceptable to Alison Moed. At the time, Moed was a per diem nurse working on the ward. "I wasn’t expecting those attitudes in my profession," she says. "I guess I could have, should have — because nurses are just people. Doctors are just people, too. But still, we do have a responsibility to care for everyone and to care for them in an equal way." So, she and the other clinicians and volunteers set out to change the standards of care. Moed would go on to become the head nurse in 5B.
In 5B, there was an emphasis on "caring not curing." Nurses were allowed to touch and hug their patients, and they were encouraged to get to know them on an intimate level. That meant having frank discussions about death and the reality of the disease. "I didn’t often find that kind of open attitude of talking being able to talk about death with a patient, and then also with members of the staff," Moed says. "Inviting them to participate was really interesting to me."
Over time, 5B became an example for other hospitals around the world, and a beacon of hope amidst the worst periods of the AIDS epidemic. Now, the ward is the subject of a new documentary, called 5B, which will be theatrically distributed on June 14 by Verizon Media. Moed spoke to Refinery29 about her experience and the legacy she hopes they can leave:
Conversation has been edited for clarity and length.
It's hard to imagine the uncertainty and fear people had about HIV/AIDS during the late '70s and '80s. How would you describe the attitude toward the disease, among healthcare professionals and the general population?
"I think at its best, it was fear of an unknown disease, and fear that it could be passed along. Fear by people in the healthcare community and in the general public that they could come down with this disease. It was unenlightened, but it was a natural reaction. We’re all afraid of the unknown, and we all have an intrinsic fear of relentless infection or something that could overwhelm us like a plague.
Somewhere in me was the feeling that, if I participated in the fight for better care, we'd be putting an end to this.
"And at the worst, I think there were people who used their homophobia — or basically fear of a population that was different from them — to kind of fuel their ignorance or lack of knowledge about the disease, and to inform how they react or how they looked at members of the community who had it. The fact that it was most obviously appearing in a community that was already stigmatized and feared made it easier for people to feed into their own fears and hatred.
"In the healthcare community, I think you saw the same thing. It was terribly disappointing to me, because hopefully healthcare workers can have a scientific background to act on, and frame what their views are. Many didn’t utilize the grounding they had because of homophobia."
What made you want to volunteer to work in the ward?
"I worked per diem at San Francisco General Hospital, and having heard the reactions of other healthcare workers, having seen the treatment that these patients were receiving, my sense of injustice was already aroused. There was something going on there. I gravitated towards nursing where there could be interaction or communication, or patients were going through important life-changing events, where you could really talk to people about things that mattered.
"[Also,] I had best friends in the gay community. When I moved out from New York, I stayed with a friend and his lover in the Castro. Somewhere in me was the feeling that, if I participated in the fight for better care, we'd be putting an end to this. We didn’t know the extent of the epidemic. I thought that my friends would be spared. I felt as though I was protecting and taking care of people who were dear to me, and by extension their community."
What did you learn from your patients and colleagues in 5B?
"On a broad level, we learned how to take care of patients who were going through this terrible disease. It was about caring, not about curing. It was about touching, and interacting. Letting people know they were safe. Letting people know that they were accepted. Letting people know that their wishes were going to be listened to, that their thoughts about their care and options were going to be respected and heard. That was not necessarily the mode in those days.
The fact that it was most obviously appearing in a community that was already stigmatized and feared made it easier for people to feed into their own fears and hatred.
"We learned how important it could be to bring the community onto the unit. There are people in families, in one’s extended network, who want to be part of the patient's care, and that's healing itself. We also learned how important it was that people weren’t just discharged — that they went home to an environment that was going to be as supportive as possible. It wasn’t just in the hospital that patients need to be taken care of. We learned a lot about compassion. There was the power of touch, but we also learned the power of laughter. People wanted to laugh, they wanted to be able to express themselves in the whole broad range of human feeling up to their death.
"We learned that compassion is one of those things that doesn’t become depleted. The more you give it, it actually replenishes. It's one those things where, the more you give, the better you feel, and want to give. That's what love is about, right? There was a very loving exchange, and loving feeling on the unit, and I know you could see it. We were really committed to what we were doing and passionate about being able to do it."
There are so many themes in the documentary that are relevant today, like healthcare access for marginalized communities. What do you hope today's audiences glean from the film?
"I'd hope that they learn that everyone can do something for those segments of the public population — whether that's someone receiving an abortion, someone who has different colored skin, speaks a different language, or has a different kind of sexuality than someone perceives themselves to have. I feel really powerless sometimes looking at this wash of discrimination. [But] I hope people learn that you can make a difference on a very basic individual level.
"You can just start out small, and what you do has a ripple effect. It's like putting one foot in front of the other, and before you know it, you're way down the trail that seemed so long and impossible to navigate. You just have to start on a human level, from your heart.
"People called us heroes, but we were just people doing what we can do. Someone said to me, Well, heroes are just people. All of us in our own way have a particular gift, and can make a difference doing what we can do. We're not all healthcare providers, but we all have mouths. I would like people to know that they can make a difference without making a grand difference. That's how we start to change a culture and the world."