Ryan White Voices
Ryan White Voices: A Legacy of Care
Curtis: The Road From Here
Darlene: Lord Protect Me
José: Mucho Orgullo
Darlene: Moving Forward
Living With HIV: Positive Voices
The ACA and the Ryan White HIV/AIDS Program
Nurses are Needed at Home
“The epidemic has changed; but that doesn’t mean we don’t need nurses. It means we need them to be doing different things.”
"The epidemic hasn’t ended at home. Walk down the street from my office and you’ll see.”
F. Patrick Robinson: Continued
Patrick grew up just 40 minutes away from Ryan White. He graduated high school in 1985 and entered nursing at the height of the AIDS epidemic. He recalls, “It was hard. As Patient Care Coordinator, I learned a lot about death and dying. I was still very young and I was testing people and having to tell them they were HIV positive.” It was during this time that he became friends with AIDS activist and mentor, Ann Kurth, an Assistant Professor at the University of Washington.
Ann, a former national ANAC president, recognized Patrick’s potential before he did. She encouraged him to join ANAC. Later, Patrick would start the local chapter in Indianapolis. He believes, “Nursing is one of those careers where it is really good to have a mentor.” Unlike most mentors, who are much older in age, Patrick finds a proximity in years helps eliminate the power differential that sometimes exists.
“The whole concept of mentorship and preparing the next generation is more rewarding than anything I did in clinical nursing,” he says of the help he provides doctoral students. While students are benefiting from Patrick’s professorship, the HIV community is benefiting from Patrick’s other job—medical research. “HIV drove my interest in the immune system and pathology and that’s what I concentrated my doctoral work on,” he says.
Patrick teaches courses in philosophy of science, immunology, and immunopathology. “Some of the development of my expertise has mirrored how the epidemic has evolved,” he explains. “The epidemic has changed; but that doesn’t mean we don’t need nurses. It means we need them to be doing different things,” Patrick reminds us. It is important to remember that nurses are needed at home where the epidemic’s visibility doesn’t correlate with the level of need.
An example of this evolution is Patrick’s research on lipodystrophy, the visible change in body shape due to HIV drugs affecting fat distribution or lipo abnormalities. In the early years, “no one was researching lipodystrophy because HIV patients weren’t developing it,” he says. And Patrick recognizes this might not always be the basis of his research because “We don’t know the long term effects of protease inhibitors. We don’t know the long term effects of lipodystrophy or HAART.” But that is why nurses are among the most trusted professionals, because of their ability to adapt to a changing work environment while keeping the patient’s needs a first priority.
“There aren’t inpatient units like there used to be,” says Patrick. “HIV nursing is something nurses don’t dedicate a career to anymore. Many of my friends in ANAC are going abroad to do internationally what they used to do at home.” While Patrick applauds these efforts he wonders what will happen to the infected in his city. “If you’re HIV positive and you live in south Chicago and you need a case worker, God bless you because you’ll never find one. The epidemic hasn’t ended at home. Walk down the street from my office and you’ll see,” states Patrick.
The report put out by the Centers for Disease Control and Prevention (CDC) confirms these sentiments. Twenty-one percent of people with HIV don’t know their serostatus1 and, as Patrick points out, more than 1.1 million people are living with HIV in the U.S.
Patrick believes that nurses have a role in the fight against HIV/AIDS in America. He believes ANAC has a role in the future. What those roles will entail is still unclear. What is clear is that HIV is changing. Patrick knows from experience that change is never easy—AIDS nursing isn’t easy. It is as challenging as it is rewarding and it is consistently a learning process. Nursing, like any profession, doesn’t define an individual but in nursing those individuals have the ability to make definite impacts. That is why looking to the future is so important. As a profession that provides care, how do we best serve individuals with a disease that isn’t curable and an epidemic that hasn’t ceased?