Honoring World AIDS Day: Stories of Care to Remember

BY AMANDA ANDERSON, RN, BSN, CCRN, and Catherine Schaefer, RN, JD

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Lorrain Bell, nurse and Clinical Coordinator at the Mount Sinai Comprehensive Health Program.

Today is World AIDS Day, marked in 1988 as the first day designated to global awareness of a health issue. Although the HIV epidemic has changed greatly since the day’s inaugural year, over 1 million people in the United States remain infected with the virus, and one in eight of these people are unaware of their infection.

It was Catherine’s idea to interview the nurses of the Mount Sinai Comprehensive Health Program (MSCHP), or as the location is more endearingly known, “HIV Downtown.” She used to work as a nurse at Saint Vincent’s Hospital before it closed five years ago, and before Mount Sinai brought MSCHP into the MSHS family. “I just feel like they have tons of stories that need to be heard,” she said to me when we met recently, at a nurse narrative event. 

On the afternoon of our scheduled interview at the clinic, we were taken to a small, neat conference room that overlooked Chelsea. Our host, Lorrain Bell, the MSCHP Clinical Nurse Coordinator, came in shortly, jumping right in, setting the pace of our conversation in a confident and eloquent tone. She had things to talk about; stories to share, and the command she held over her narrative grabbed us out of our work-worry distraction, and held us rapt and eager to listen.

It goes without saying that MSCHP has changed drastically since Lorrain joined its original form at Saint Vincent’s in 1993, ten years into her nursing career. She wholeheartedly admitted that she never looked back from HIV care; “…the intensity of the draw for me was the incredibly complicated illness and the amount of care these people needed,” she said, shaking her head back and forth, her white bob waving, “I was never afraid of HIV or taking care of people with HIV.”

Saint Vincent’s nurses pioneered the early efforts for care coordination for the first of New York’s HIV population, Lorrain told us. Although there was fear at the beginning, she spoke highly of the support that the small, Catholic community hospital showed to HIV patients; “…nobody knew what it was, and it was a very challenging time,” she said, “…but the program grew very quickly; they had to – it was a need!” The clinic was the largest of its kind, with over 3,000 active patients at the height of the crisis.

During the early days of the virus, Lorrain said she and her fellow nurse-colleagues would treat people at the hospital, and many cared for friends who were sick at home, too. Speaking strongly, she told us how she wished that there had been support for the emotional toil the epidemic often took; “…so many of us went in and just did our job. Nobody asked for help; you had your job to do…just put one foot in front of the other, you just kept moving.”

In contrast, Lorrain spoke about HIV today, and how the functions and needs of nurses are very different than they used to be. The complex care she knew at the beginning of her career – “daily trauma” – has done a 360-degree turn toward public health prevention. “I’d liken HIV, as do many people, to diabetes,” she told us, saying, “…it is a treatable disease…if you do what you’re supposed to be doing just like a diabetic…your challenges – in terms of what people went through – are never going to be like that again.”

She’s right, and the prevention-based focus of MCHPS speaks to this change. One of their major initiatives, a grant-funded program called, “The Summit,” is the administration of rapid testing and treatment for people who believe they have been exposed to HIV, known as nPEP – non-occupational post-exposure prophylaxis.

Patients with exposure must receieve nPEP within 36 hours. “None of these patients have appointments; they all have to be fit in, but if somebody comes in close to the deadline, I can’t have somebody sitting out there [in the waiting room] in some danger,” Lorrain explained. MSCHP staff will rearrange the waiting room list to meet the window of best chance for prevention. Nurses triage the nPEP patients, and then work with the providers and other team members to administer the “Stop the Clock Dose,” in order to meet the deadline and prevent conversion.

Lorrain boasts an almost absolute prevention rate in the eight years the program has provided this innovative service; “It’s effective! We have not had a person go from negative to positive – provided that they take the medicine….” she shouted, happily. The HIV care of the present, thanks to advancements and interdisciplinary teamwork, seems far less traumatic than the past.

MSCHP continues to grow, with the help of Mount Sinai, and the various grants that the program receives. “Mount Sinai is progressive and supportive of the programs that we are running,” Lorrain confidently shared, saying, “…everybody, I think, feels this need to carry on and continue this fight, but it’s not the same fight, it’s a different fight – and I think that’s what nurses are best at, looking at where the problems are.” She referenced higher rates of STDs and growing transgender services as the new challenges she feels prepared to mount under the auspices of Mount Sinai’s encouragement and vision.

We left quickly; Catherine running out with earbuds in tow to jump on a conference call, me hopping on my bike to ride in the cold evening towards more work. “That was awesome,” I said to her before we parted. “Yeah, and Lorrain was just one of the original nurses – think of how many more stories need to be told,” she replied.

Only 23 years have passed since Lorrain first started her work with HIV patients at Saint Vincent’s, when people were dying more often than they were surviving. Today, Lorrain and her colleagues struggle to convince patients to wear condoms and take their pills consistently. Thanks to the incredible scientific developments in HIV treatment, the disease will, hopefully, disappear someday soon, perhaps taking with it the need to recognize World AIDS Day.

But as we reflected on Lorrain’s stories and the images of her work in the disease-ravaged New York of HIV’s early days, I couldn’t help but wonder if we should continue remembering December 1 as World AIDS Day forever – no matter the future. Even when the virus is wiped out for good, we must always remember these profound stories of care.

FinalWorld AIDS Day 2015

Amanda Anderson RN, BSN, CCRN is an ICU nurse who currently works in nursing administration at Mount Sinai Beth Israel.

Catherine Schaefer, RN, JD is an ICU nurse with over 18 years of experience. She is currently the Director of Professional Practice, and Patient Safety and Regulatory Affairs at the Department of Nursing at Mount Sinai Hospital.

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