How two nurses kept hope alive at the start of the AIDS crisis / LGBTQ Nation

Ahead of World AIDS Day 2021, I had the great privilege of sitting down with Ellen Matzer, RN, CCRN, and Valery Hughes, FNP, RN authors of the book, Nurses Inside: Stories from New York’s HIV/AIDS Epidemic.

When a friend suggested that Matzer write a book about her experience as a nurse caring for AIDS patients, establishing the first AIDS wards and clinics, she at first gave up. But in the summer of 2017, she started thinking about it and started writing down her memories and stories.

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Realizing something was missing, she contacted Hughes, who she was working with, and began a collaboration. Two years later, the book Nurses inside was complete.

The day I sat down with Matzer and Hughes to talk about the book and their experience, one of my first questions I asked was whether they had any idea what they were seeing would become a huge pandemic; neither had the faintest idea. They explained that it was rare for nurses from different hospitals to talk about their cases; there was no method of sharing information, no social media, no cell phones. Hughes would be one of the founding members of the Association of Nurses in AIDS Care because they saw the need for it.

Matzer explained that there was no AIDS specialty or dedicated care initially. The first was at the old Saint Clare Hospital in Hell’s Kitchen, which Hughes describes as a “horrendous part of town”. The hospital was run down, lacking most of the basics, from air conditioning and furniture to file racks. No one wanted to work there.

Matzer described how, with the exception of nurses and doctors, anyone else willing to work was hired and learned as they went, from nursing assistants and orderlies to unit secretaries.

“Anyone who walks through the door of Saint Clare is hired and trained to do something,” Matzer told me.

Hughes added that someone could get a job if they weren’t scared because so many people were scared and wouldn’t care for people living with HIV. At the start of the book, they share their experience of ignorance and fear, not only of the virus, but also of the LGBTQ community, describing how a colleague was overheard saying they “deserved it”, referring to men homosexuals contracting HIV.

But it wasn’t just fear, ignorance and lack of resources; there was no treatment. It was before any cocktail, before AZT. In the book, Matzer asked Hughes, “Do you think we help? to which I ask if it was a common question they were asking.

“Did we really help anyone? We didn’t save anyone, that’s for sure,” Matzer said. “We didn’t save anyone’s life. I’m not even sure we really extended anyone’s life back then.

Matzer said she thought they relieved suffering, relieved pain, kept people clean and tried to come up with different things patients could eat to gain weight. She described how they mixed Carnation Instant Breakfast with milk, then put it on cereal; they put butter, mayonnaise and syrup on whatever they could to give patients a few extra calories.

Hughes added that they were very present in patients’ lives, which was the added value. People did not die alone. Even for patients who weren’t in the hospital, Matzer, Hughes and other staff visited them so they always had someone to see them every day to know they were being taken care of. charge and that they were important.

HIV, the virus that causes AIDS, was identified in 1983, and it would be nearly four years before the first AIDS treatment, AZT, became available. By then, thousands of people had died.

We discussed activism born out of HIV/AIDS and how the LGBTQ community came together; groups like ACT UP. Hughes described his first research work with Community Research Initiative which was co-hosted with ACT UP in Chelsea, ACT UP Witness.

When I asked them if they were surprised by the activism, Hughes replied, “Finally gay people stood up and said, fuck no, we don’t tolerate that anymore.”

Most people don’t realize that it is because of the AIDS crisis/epidemic that we have a patient bill of rights. Today, patients have access to what healthcare professionals record in their records and have recourse if they are not treated with dignity and respect.

Matzer told me she just finished never silent by Peter Staley, one of the founders of ACT UP; it tells the story of ACT UP and the interactions between him, Larry Kramer, who was a fellow founder, and Dr. Anthony Fauci.

“People assume that because we took care of people, we weren’t activists. I mean, we were activists when it came to taking care of our patients one-to-one or one-to-two or one-to-three patients. We were activists for them, advocating for their health and safety as much as possible, but we weren’t there to organize protests,” Matzer said.

After 40 years and millions of lives lost, there is still no cure for HIV, and although there are new drugs that allow many people to live with this deadly virus, it is estimated that up to one million people worldwide died of AIDS in 2020.

I asked if there was a turning point in this pandemic where they felt like while it couldn’t be cured it could be controlled, and Hughes mentions 1995 when AZT, the first drug to treat HIV, has been approved. More advances and drug cocktails would follow and Hughes said, “And then all of a sudden people stopped being so sick.”

Although we have come a long way from the days when there was no cure and infection was considered a death sentence, we also have a second generation that has grown and grown without a personal understanding of what it was. Despite new drugs that can allow an individual to achieve an undetectable viral load and PrEP drugs, the new enemy in the fight against HIV/AIDS is complacency.

Matzer and Hughes agreed that education is key because those most at risk face socioeconomic disadvantages that often include a lack of education and access. For those of us who were there in the first place, it is our responsibility to ensure that current and future generations have a frame of reference and an understanding of the HIV/AIDS epidemic and all the unfinished lives that have been lost.

To learn more about Ellen and Valerie, visit their website www.nursesontheinside.com, their book Nurses On the Inside: Stories of the HIV/AIDS Epidemic in NYC is available on Amazon. To watch, listen or read my entire interview with Ellen and Valerie, visit my www.Espressotalks.com

About Bradley J. Bridges

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