Living into the Lessons of 5B with HIV/AIDS Nurse Guy Vandenberg

I was working as an aide in Coming Home hospice in San Francisco, and we started seeing many patients come in from SFGH’s Ward 5B when it was clear they were going to die or if they didn’t want to undergo treatment anymore. Some HIV/AIDS patients would actually go back and forth from our hospice to Ward 5B, and that’s how I learned about the ward and San Francisco General Hospital. Working with the nurses from our hospice and SFGH made me want to become a nurse myself and care for patients. It seemed like such a meaningful profession to take care of loved ones in such difficult situations.

Because of my skills working in hospice, I was recruited to come and work as a nurse in Ward 5A in 1995, which at that time had garnered a lot of national attention. Ward 5B had grown so rapidly during the 1980s that it had to expand to Ward 5A, so that’s where I worked. A lot of the groundwork for how we were embracing HIV/AIDS patients had been laid by Cliff Morrison and Alison Moed Paolercio[1], and the nurses on their team during those early days, and it was an honor to continue carrying out their vision.

[1] Nurse Cliff Morrison founded Ward 5B in 1983 and Alison Moed Paolercio was the ward’s first nurse manager. Both are featured in the documentary 5B.

When I think back to my time in Ward 5A and working in the hospice, it was really the patients that inspired me. These patients were so sick and yet so open to let us into their lives and talk about their worries. We felt like we were in this together. And like Mary Magee[2] said in the film, it was love. We were allowed to love our patients and each other and grew really close.

Not all patients were easy- many who had been disenfranchised and discriminated against were angry that they had to battle this. But we all knew that is part of the job, and it was a privilege to be there at that time and provide care to all of the patients who needed us.

[2] Mary Magee was a nurse in Ward 5B, who was later revealed as the anonymous nurse who contracted HIV in the ward following an accidental needle stick.

There were times when I was very angry, but I tried to channel that anger into activism with organizations like ACT UP.[3] I was also sad, of course. The amount of loss was tremendous. When I worked in hospice, about three patients were dying a week, and we didn’t really have time to grieve because almost immediately there would be a new patient in the bed. And in spite of everything, there was a lot of hope, and I felt a lot of pride to be a part of it and work with such amazing people.

[3] ACT UP (AIDS Coalition to Unleash Power) is an international, grassroots organization that worked towards combating the AIDS pandemic through direct action, medical research, treatment and advocacy from the 1980s to the 2000s.

Ward 5B and 5A were an incredible combination of helping patients reclaim their humanity, supporting it and celebrating it. We focused on living and making the hospital patient-centered, and we tried to remember that life goes on, even in a hospital. We can never forget that we are treating a person, not a collection of tubes and organs.

And I think nurses are innovative, but they don’t always feel empowered to take the lead. I’d love for nurses to feel emboldened to share their great ideas. Nurses know what they should be doing, that what is in their gut is often right. It’s so important that we have each other for feedback and to discuss solutions because we can’t innovate alone, it happens when we work as a team. It’s hard to do in a busy setting, but hopefully those in management can build in time for nurses to connect and strategize together because it’s important.

I currently work in SFGH’s Ward 86, an outpatient HIV/AIDS clinic, and nurses have started all the important programs there. It was the nurses’ idea to create a reproductive health and women’s clinic there. It was a nurse’s idea to create a program in Africa for HIV/ AIDS prevention. My husband, Steve, and I worked with this program for almost 10 years and he’s able to share the importance of preventative care because he tells people, “My name is Steve, I have HIV and I’m healthy because I take these medications.” It makes a world of difference, and it was all a nurse’s idea.

Above all, I want nurses to take care of themselves. Many of our colleagues suffered alone, and I lost a good number of them to suicide, depression and overdose because they felt isolated during this time, and it was so unnecessary. Today’s nurses should continue to stand up for each other and to nurture the relationships they have with their team.

There have been significant advancements with new technologies and antiretroviral treatments, but I think few people understand just how the HIV/AIDS crisis changed healthcare. Patients, researchers, governments and companies banded together into a fierce coalition to address the crisis, creating an infrastructure that I believe has been applied to fight other infectious diseases, like malaria and tuberculosis.

Many things that were considered impossible before the HIV/AIDS epidemic are now considered standard. Who we considered to be a patient’s family member was revolutionary in those days, as was bringing in food from the outside into the hospital setting. How we frame conversations when telling a patient their diagnosis has changed. New hospital rooms are being built large enough to accommodate loved ones so they can stay with the patient, something we showed the importance of. Above all, the crisis encouraged more dialogue and patient-centered, relationship-centered care.

I also think more people believe healthcare is a human right than ever before, to every member of our species, even those who you might not have a natural affinity with. There’s still a lot of work to be done to address racial health disparities, but we are moving in the right direction.

Most people for example don’t realize that there are more people living with HIV in San Francisco now than any other time, they think the crisis began and stayed in the 80s.[4] Because of innovations in medicine and therapies, people with HIV are living longer, but neither the struggle, nor the stigma, has gone away. People are still getting infected, mostly in marginalized communities such as people who use drugs, transgender people or those experiencing homelessness. We need to continue to work to improve access to treatment in the U.S. and around the world.

[4] San Francisco AIDS Foundation. (2019). Resource: HIV & Hep C Statistics. Retrieved from https://www.sfaf.org/resource-library/hiv-hep-c-statistics/

I don’t think many people understand the incredible role nurses have had in combatting the epidemic. About 80% of all HIV and AIDS care worldwide is delivered by nurses.[5] Over the years, nurses have evolved their skills to learn to manage chronic diseases. Nurses in rural African communities have been allowed to deliver therapies to save more lives, which has been a huge shift in the role of a nurse in those regions.

I also think our mindset has changed in many ways. In the early days, it was a crisis and we were alternating between our hospice and ICU skills, palliative care and high-level interventions. With new technologies and antiviral therapies, HIV and AIDS has shifted to a manageable disease. Today, nurses believe one day there will be a cure, it doesn’t feel like a far-off dream anymore.

[5] Association of Nurses in AIDS Care. (2017). Global. Retrieved from https://www.nursesinaidscare.org/i4a/pages/index.cfm?pageID=4708

I think the biggest misconception is that it happens to somebody else, and it’s their fault. Many believe the disease is driven by poor lifestyle choices, and it’s a way for people to put less desirables in a certain group. We teach HIV/AIDS prevention by talking about how to avoid “risky behaviors” and I’m struck by this phrase. Many people use drugs and have sex, but only certain groups get singled out.

The HIV/AIDS crisis has historically had a lot of links to racism and societal economic access to healthcare, seen mostly with gay or bisexual African American men, and if the disease affected a different group of people I believe the situation would be very different. Access to care can be a vehicle for people’s prejudice, and the stigmas are still prevalent today. While it has improved for many who are battling AIDS, it makes one really think about who are today’s “untouchables” in society.

When my husband Steve and I were first approached to participate in the film, we weren’t sure it was something we’d be interested in doing. There are already so many sad and depressing films about people getting sick and dying from AIDS and we didn’t want this film to be like that. But the research team behind the film won our trust and our hearts and we decided to give the film a chance. We got to reconnect with people we haven’t seen in years in the process, and it was really meaningful. Cliff and Alison were really the founders of the family we had. And it wasn’t so bad to relive some of this stuff because – just like before – we were all doing it together.

Initially, I was very nervous about seeing the film for the first time. But it’s such a relief that the film is evocative and doesn’t focus solely on the past. We’ve been traveling the country with the film, and after the screenings, most people in the audience have said this film isn't about the past, it’s about what people can do now, because our work is far from over.

I knew the film was going to be a big hit at indie film festivals, but I didn’t expect the incredible response we’ve received. We’ve all been asked to do so many interviews, and we were all invited to Cannes to be on the red carpet with A-list celebrities. It’s been absolutely surreal. I hope people leave the film feeling more ambitious, that everyone can do something, and that more people feel inspired and drawn to enter the nursing profession, because we greatly need more nurses, and it’s such a rewarding experience.