In 1983, Richard Sowell was studying for his master's degree at the Medical College of Georgia and working at Grady Memorial Hospital on the weekends. He remembers a co-worker telling him that one of "those" patients was in the hospital and on his ward.

"I didn't even have to ask what she meant. Health officials all over Atlanta had been talking about this new infectious disease that was killing gay men, and quickly. No one knew what caused it, and the speculations created a different panic almost every week," said Sowell, now dean of the College of Health and Human Services at Kennesaw State University.

Since 1981, when a doctor in Los Angeles began seeing Kaposi's sarcoma among his young, gay patients, the virus had been called "the gay cancer" and, later, GRID (gay-related immune deficiency). As hemophiliacs, drug users, Haitians and others began to present the same symptoms, the virus was finally identified as AIDS (acquired immune deficiency syndrome).

In the epidemic that followed, Sowell, Ph.D., RN, FAAN, saw some of the most ethical and the most unethical behavior toward AIDS patients.

"I didn't blame people for being scared. Anyone who wasn't scared was crazy," he said. "We had a terminal, infectious disease, and we didn't know anything about it. Fortunately, there were nurses who stepped up to the plate and took a risk."

One was Cliff Morrison, a nurse who started the world's first AIDS ward at San Francisco General Hospital in 1983. It became a model for compassionate care for AIDS patients.

"Nursing these patients in the early days was a real challenge. I have never felt more hopeless or helpless as a nurse," Sowell said. "You did everything you were trained to do, tried to educate yourself with the latest information, and, no matter what you did, they died in your face.

"I felt like if I could just hang on for a few years, there would be a cure, but the loss of young lives was gut-wrenching."

Sowell would go on to do groundbreaking research in AIDS care and to develop a case-management system for AID Atlanta (1992-95). With the growing pandemic of the virus in Africa, Asia and Third-World populations, and the changing demographics of AIDS patients in the United States (more African-American women than gay men), he's not sure he's going to see the cure.

Grady's role

Grady Health System opened a specialized immunology services ward for HIV/AIDS patients in the late 1980s. Because it was a teaching hospital for Emory University and Morehouse College physicians and was located near the Centers for Disease Control and Prevention, the hospital stayed on the cutting edge for new research and regimens, said Andrea Lewis, RN, BSN, MHA, director of the Medical-Surgical Nursing Department at Grady Health System.

"Nurses have always been on the front line of AIDS care. It takes a lot of tolerance, patience, compassion and understanding to work in this specialty," she said. "You have to have a huge base of knowledge and skills, because so many bodily systems are affected by the disease, and recent populations are indigent and have other mental or health issues, which add other challenges to the care.

"I tell nurses who are interested in this field that they are going to see it all and that it will prepare them to do anything. Those with a caring attitude enjoy the work and stay."

Lewis can remember when nothing that caregivers did worked and many patients died in the hospital because there was no other place for them to go.

"Now our patients don't come in as sick," Lewis said. "I love the fact that I have patients I have known for many years, that I've established a rapport with them and their families. They leave here smiling, and I know that they have some quality of life. That's very rewarding."

Thanks to about two dozen HIV-fighting drugs that have been discovered and tested since the mid-1990s, an AIDS diagnosis is no longer a death sentence but more of a chronic disease. With the right medication and care, an AIDS patient can expect to live with the disease for about 24 years. The average annual cost is about $25,200 per person, according to a study by New York's Weill Cornell Medical College.

Outpatient care

Care has mostly shifted from dedicated hospital wards to outpatient clinics, where nurses are challenged less by seeing their patients die and more by helping them live. One of the nation's largest clinics is the Grady Health System's Infectious Disease Program five-story clinic in Atlanta, which clinical manager Marie Todd-Turner, RN, BSN, M.Ed., ACRN, calls a one-stop shop for HIV/AIDS care. It's the only center that specializes in advanced-stage patients only.

"We treat men, families, patients with multiple diagnoses and additional challenges like homelessness, mental illness or substance abuse," she said. "We have our own lab, case workers, pharmacy, acute care center, hospital transportation and access to community resources. Our clients love it."

Todd-Turner started working in AIDS care with the military's HIV program as an Army Corps nurse.

"I was always interested in advocating for AIDS patients because there was a lot of ignorance out there," she said. "People were afraid to tell their families. They were shunned, and not being able to talk about it only added to their isolation and depression."

Too often she saw patients deal with AIDS through alcoholism, drug abuse or suicide.

"Convincing patients to take care of themselves, to participate in clinical trials because I knew effective drugs were coming, became my interest. That's where my heart has been," she said. "An AIDS nurse has to be an advocate, as well as a social worker, clinical adviser, confidante and educator for her patients and the public."

Grady's IDP clinic employs about 20 nurses, seven nurse practitioners and several clinical nurse specialists to care for its 4,700 patients.

"In the beginning, AIDS nurses did what they had to do for really sick and dying patients. Now the nursing roles are a lot more specialized," said Carla Johnson, RN, BSN, ACRN, clinical manager.

The clinic has charge nurses, acute care nurses, team nurses who provide advice to patients between visits to doctors, and discharge planners. Nurse educators assess whether patients are ready, willing and able to start a prescribed regimen, and they provide ongoing support for patients on therapy.

"Studies show that adherence is key and makes or breaks AIDS patients, so our nurses support adherence through all kinds of teaching aids and tools, from providing pill boxes with alarms to engaging family members to provide encouragement," Johnson said.

With better care and more drugs on the market, patients are living longer. A byproduct of that combination is that AIDS nurses must look for and treat adverse drug interactions and other medical conditions that may develop. They also help patients find payment assistance for drugs that cost from $600 to $1,000 a month, Johnson said.

"Federal funding is available through the Ryan White CARE Act, but not all patients qualify for public money," Johnson said.

Importance of research

Nurses have indirectly and directly fostered pharmaceutical and care-model research. Ericka Patrick, RN, BSN, a research nurse supervisor with the Emory University Center for AIDS Research, fell into the research role and found her niche. "I love everything about it," she said.

Patrick enjoys the intellectual rigor and being part of a team that brings hope to patients.

"I was part of the investigational trial for Kaletra, a pro-tease inhibitor that is used and working," she said. "I helped birth that baby, and it makes me feel proud.

"I've been out of the hospital setting 10 years and I feel more mentally astute than ever, because I'm constantly reading and learning."

She believes that connecting with her patients helps them to understand the need for clinical research.

"When you form a bond with patients, they trust you," she said. "I'm hopeful because of the changes I see in patients when they take their meds correctly. When you see someone go from being really sick to going back to work — that's the reward."

Despite new drugs, greater knowledge and better care, there still is no cure for AIDS. More than 40,000 people become infected each year in the United States.

The clinic still loses patients to AIDS. The staff remembers former patients by name each year at a memorial service. In 2006, the list contained about 300 names.

"One of the most challenging things we do is walk with patients and their families through the tragedy of the dying process. It's one of the most rewarding things you can do professionally and spiritually as a nurse," Johnson said.

Dennis Flores, BSN, is a recent graduate of Kennesaw State University's WellStar School of Nursing. He served his community health rotation at Grady's IDP clinic and said that it confirmed his decision to be an HIV/AIDS nurse.

"I went into it with really grim expectations," Flores said. "What I found was a really good place where nurses were concerned about everything. It was inspiring — the most gratifying experience a student can have."