It’s easy to find Sally Neville in the three-story Kansas City Care Clinic. Just follow the sound of laughter.
Neville’s colleagues say the Indiana native’s laughter and intelligence help make her a good mentor and a good health care provider.
“We have fun,” said Janet Haston, who was a volunteer at the facility when Neville arrived in 1992 and joined her fellow nurse as an employee in 1995. “It sounds trite but we always talk about having a good sense of humor and … keeping it fun. We have a good camaraderie here.”
Neville believes it is important to “have a work environment where you can have a little fun and you can laugh even in the face of – and sometimes especially in the face of – dealing with really difficult situations.”
She has plenty of experience dealing with difficult situations – perhaps more than anyone else at the clinic, which opened its doors in 1971 as only the second free clinic of its kind in the United States. Neville is director of HIV primary care and of the clinic’s Midwest AIDS Training Education Center. During the past two decades, she has personally treated or overseen the care of tens of thousands of HIV patients.
“It’s not telling jokes and it’s not humor at the expense of other people. It’s just finding humor in the absurdity of everyday life and I encourage that,” she said of her style of humor. “Especially when you’re dealing with the multiple issues that we deal with – substance abuse, homelessness, addiction – when you’re taking care of people who have huge obstacles in their lives, it can wear on you. It’s important to be able to laugh through the day.”
The road to Kansas City
Growing up in Terre Haute, Neville did not originally plan to become a nurse but changed her mind when she took a job as an evening ward clerk at St. Anthony’s Hospital while a student at Archbishop Paul C. Schulte High School.
“I was never going to be a nurse because my mother was a nurse,” she said, “but I started working at the hospital and found myself totally intrigued with everything that was going on. I wanted to know why something was happening with a patient and that’s how I decided to go into nursing school.”
Neville enrolled in the nursing program at Indiana State University, her “hometown” college, and worked nearly full time while completing a bachelor’s degree in nursing.
As graduation drew near in 1974, Neville made plans to head west to meet friends who lived on a commune in northern Missouri. Fearing the aging Volkswagen Beetle that had served her well on the streets of Terre Haute wouldn’t make it across two states, she traded it in on a shiny red Dodge Dart.
The day after graduating from Indiana State as one of 18 women to complete a bachelor’s degree in nursing, Neville steered the Dart onto Interstate 70 and headed west, stopping in Columbia, Mo., a growing city that boasted seven hospitals.
“I knew I could get a job in Columbia and I ended up staying there for a long time. It was a great city,” she recalled.
While she spent her days off at her friends’ commune about an hour’s drive from Columbia, she never lived there full time. After a couple of years, “the rest of life took over” and Neville stopped visiting, she said.
Neville’s first job after college was as a psychiatric nurse at Missouri Health Center. She went on to hold a variety of nursing positions during 16 years in Columbia, mostly in oncology and intensive care. She also attended graduate school at the University of Missouri, graduating as a clinical nurse specialist – “an old timey degree,” she said, calling it comparable to today’s nurse practitioner degree but more hospital based.
During a slow night in the intensive care unit at Harry S Truman Veterans Hospital in 1981, Neville read a report in the Centers for Disease Control’s Mortality and Morbidity Report that intrigued her. The one-paragraph article told about men in Los Angeles and New York with Kaposi’s sarcoma and pneumocystis pneumonia.
“Both were extremely rare oncology diseases and there were these two cohorts on either side of the country with both of those diseases and they were all gay,” she said. “I remember thinking ‘What the hell does being gay have to do with this?’ As an oncology nurse, I knew those things just didn’t all of a sudden start happening.”
Though she was “hooked” from that moment on the mystery of what would become known as HIV and AIDS, another nine years would pass before Neville took a job at Trinity Lutheran Hospital in Kansas City to work in a unit that was dedicated to HIV and AIDS, a terminal illness at the time.
“I’m a lesbian and I had gay men friends who were sick and dying. It was an opportunity to tackle some of the personal issues related to being gay as well as to tackle societal issues related to being gay,” she said of her decision to devote her career from that moment on exclusively to HIV patients.
Treatment, education and comfort
It was at Trinity Lutheran that Neville first met Justin Suelter, a man then in his 20s who worked at what he called a “gay establishment” in Chicago before he moved to Kansas City to care for his sick father. Suelter found friends in both cities becoming sick.
“All of a sudden, my friends were getting the ‘gay cancer’ and my roommate got really sick. There were a lot of hospitals that weren’t even taking people with this mysterious disease because they didn’t understand it, but I knew that Trinity Lutheran did. His name was Roger Last and I took him there and he passed,” Suelter said, choking back tears as he recalled his partner’s death more than 20 years ago.
“The nurse was Sally Neville and she stood there with me through the whole thing,” he said. “I never really got to know her but knew she was a very loving and caring person and very good at what she did.”
A few years later, a friend suggested Suelter be tested for HIV and he learned that he, too, had the disease that had killed his loved one. He went to the Kansas City Care Clinic for treatment, found Neville working there, and said she opened his eyes to the risky lifestyle he and his friends were leading by having unprotected sex with multiple partners.
“She was the one who kind of educated me on that and I will never forget how all of this time I felt like ‘Oh, my god, have I been bringing these infections to these people?’” he said.
By the time of Suelter’s diagnosis, protease inhibitors had been developed that helped patients live with HIV. Saying he needed to fill his newfound precious time “with something healthy,” Suelter began volunteering at the clinic. A few years later, at Neville’s encouragement, he took a job with the facility as a peer counselor and has spent the last decade working alongside Neville full time.
“She has been one of the most inspirational people I have met in my life,” Suelter said. “When Sally approaches me with a project, I know she has already thought it out. She has looked at the logistics side and the financial parts of it. She knows the big picture.”
Research and administration
Neville and the Kansas City Care Clinic have become nationally recognized in the area of HIV and AIDS research as well as treatment.
“Sally Neville’s name is well known in the various halls of Washington D.C. where the funding streams originate,” said Dr. Craig Dietz, the clinic’s medical director. “All of the top-level officials know Sally’s name and know the program she has created is a model program. She is frequently asked to consult with other programs throughout the country and do audits and advise other programs trying to get funding.”
The Department of Health and Human Services routinely looks at Neville’s program “for how to do things better and distribute that knowledge to other smaller clinics,” he said.
Neville said “it’s a nice feeling, a surprising feeling” to be so recognized.
“I love the fact that the clinic is known nationally for the work we do here and the model of care we have developed,” she said. “I just feel like I’m so lucky to have been in a position to have been able to contribute.”
Sheri Wood, the clinic’s chief executive officer, said Neville stands out for her willingness to go beyond patient care to taking on administrative duties.
“She’s good at grants writing; she’s good at budgeting. She has incorporated the administrative piece to her nursing career as well as patient care and she can go back and forth,” Wood said.
Neville currently administers eight clinical trials focusing on HIV patients, one of which focuses on persons co-infected with HIV and hepatitis and two that are observational trials of therapy methods.
By participating in such trials, the clinic generates some much needed revenue while also providing medications to patients who might not otherwise qualify.
Dietz said Neville’s work is “what makes HIV healthcare actually happen” – not only in the clinic but regionally.
“We always talk about someone who has a Midwestern work ethic but it’s a dying thing to find – someone who comes from the Midwest and really knows how to work hard to change her own life and the lives of others,” Dietz said. “Sally has a tireless work ethic. She will work all hours of the night to get the job done and to make sure that all of our services get the funding and support they need.”
Beyond being a good nurse, administrator and researcher, Neville is an inspiration to others at the Kansas City Care Clinic – and not just those who work alongside her in caring for the facility’s 600-strong caseload of HIV patients, said Wood.
“Sally is known for being a clear thinker and very organized. We have a very young staff here and she has mentored many of them and helped them grow and then go on to other places and to embrace their careers in a different way,” she said.
“Sally immediately took me under her mentorship and educated me about HIV,” Haston said of her work with Neville during their early days together at the clinic. “She encouraged me to take the initiative and understand what I needed to do as a nurse to assist them in staying as healthy as they possibly can.”
While management “typically ignores the lower levels of the pyramid,” Haston said, “Sally is very much open to input from all levels.”
Reflecting on her life after nearly 40 years as a nurse, and after devoting more than half of her career to the treatment of HIV/AIDS patients, “there is a sense of destiny that this was where I was supposed to be,” Neville said.
“How I got here I don’t know, but the fact that I got here, I think, was meant to be,” she said. “You have the opportunity to take advantage of what is put on your plate … to overcome the obstacles that are put in front of you and … to take advantage of the opportunities that are put in front of you. Being a nurse is an extremely important part of who I am. That started at Indiana State and that has taken me a long way.”
Neville’s office looks out over Kansas City’s South Broadway Ave. The heavily traveled street that houses one of the nation’s oldest free clinics is also home to an eclectic mix of major banks, insurance companies, ornate churches and the national headquarters of the Veterans of Foreign Wars.
On her office windowsill, she has arranged plastic blocks to spell the word “peace.”
“In the ‘70s, I would have definitely considered myself a hippie,” she said. “Whatever you want to think about what the hippie philosophy is, I have always been interested in social justice, equal access and human rights. What just popped into my head is the new Bruce Springsteen song ‘We Take Care of Our Own.’ A lot of what I’m about is working to take care of my own and my view of who my own is is pretty diverse and pretty wide.”
Dave Taylor is the director of media relations at Indiana State. A job well done makes Dave happy.