The Unbroken Chain: Three Decades of HIV/AIDS Nursing
To celebrate the 150th birthday of UC San Francisco and the role that the School of Nursing has played in this unique health sciences institution, Science of Caring is running a series of stories that focus on important, often seminal contributions that the School has made to health care delivery, education and research. The School’s historic work in HIV/AIDS care – its clinical, research and educational leadership – has created a small army of experts who continue to improve care for people infected with the virus.
In June 1981, nurse educator Angie Lewis from UCSF’s Moffitt-Long Hospital (now part of the UCSF Medical Center) attended a conference of Bay Area Physicians for Human Rights, an organization of LGBT (lesbian, gay, bisexual and transgender) medical professionals founded four years earlier to improve health care and support the careers of LGBT health professionals. It was there she first heard of an unusual cancer, Kaposi’s sarcoma (KS), which seemed to be striking gay men in large urban settings.
When the speaker mentioned a possible connection with sexual activity, Lewis, who coordinated workshops on human sexuality at UCSF, was alarmed and intrigued. She joined a small study group on KS that included researchers and physicians Marcus Conant, Paul Volberding, Constance Wofsy and Donald Abrams, all of whom went on to make essential discoveries in the fight against what would later become known as HIV/AIDS. Lewis began to incorporate what she was learning about this new epidemic into the workshops she taught at UCSF.
In doing so, Lewis became one of the first links in a chain that has made UCSF nurses and UC San Francisco School of Nursing local and world leaders in HIV/AIDS education, research and patient care. From the earliest days of the epidemic through advances that have transformed HIV infection from a death sentence into a manageable chronic condition, these nurses and nurse scientists have played a critical role in crafting and improving HIV/AIDS care on many levels and in many places – and changing all of nursing in the process.
Nursing on the Front Lines of the AIDS Crisis
Around the time Lewis was introducing terms like “Kaposi’s sarcoma” and “pneumocystis pneumonia” to her colleagues, recent City College of San Francisco nursing graduate Diane Jones was encountering very sick patients in her first job on one of San Francisco General Hospital (SFGH)’s medical-surgery units.
“It happened to be the primary destination for all the patients with AIDS, although we didn’t know what it was,” says Jones. As the number of patients grew, the San Francisco Department of Public Health partnered with UCSF to create the first outpatient clinic devoted to caring for people with AIDS: San Francisco General Hospital’s Ward 86, which opened in January 1983. Six months later, the hospital started the first dedicated inpatient AIDS unit in the nation, known as Ward 5B. Cliff Morrison, clinical faculty member at the School, was tapped to create the unit. As a psychiatric nurse, he had concerns that went beyond the disease’s physical toll.
Not everyone wanted to work with patients who had AIDS; far from it. When Wards 86 and 5B opened, the cause of AIDS was still unknown. There was a general consensus among clinicians that it was bloodborne and sexually transmitted, but there was still a great deal of uncertainty. Existing biases also played a part. “It was hard to tease out what was fear and what was homophobia,” says Jones. “[Cliff] spent a fair amount of time talking to patients and asking for advice on what type of people he should recruit. Several of the patients said, ‘Oh, there are these two nurses on the night shift, and they’re not afraid of us, and they’re gay. You should get them.’” Jones and another recent graduate, Charles Cloniger, joined the team.
To build the unit’s staff, Morrison ended up asking for volunteers: volunteer janitors, a volunteer unit clerk, a volunteer social worker. “The people who came to work there were people who had chosen to respond,” says Jones.
The patients’ comments and the caregivers’ fears speak to the role stigma has always played in HIV/AIDS care. Mary Lawrence Hicks, now a nurse practitioner supervisor and director of community programs for SFGH’s Positive Health Program, was in nursing school and working as a health attendant in New York in the early 1980s; she became one of the few health workers there who agreed to work with AIDS patients.
“On my first case they told me to go to St. Vincent’s Hospital [in the Greenwich Village neighborhood of Manhattan] and said, ‘You’re going to take this patient in an ambulance home to his apartment, but do not mention AIDS [to the ambulance attendants] or they won’t take him,’” says Hicks today.
The Intersection of Nursing Care and Activism
Morrison’s approach to creating Ward 5B also provided an opportunity for people with AIDS and their advocates – including nurses – to work openly for important changes in health care that we take for granted today. In the cities hardest hit by AIDS in the US initially – San Francisco, New York and Los Angeles – the epidemic drew health professionals to join LGBT community activists to fight for better care and more rights for people with AIDS.
“Many of us would go from work to meetings, where we were on panels with our patients,” says Jones. “We participated in joint interviews to get the voices of patients heard and changes made.” Those changes included access to and the right to accept or refuse care, patient confidentiality, the right to designate a decisionmaker and the right to dignity in care. These were not unknown concepts, but their position at the center of AIDS activism helped cement them as fundamental to quality health care.
Creating the San Francisco Model
Ward 5B was nurse-led and largely avoided the traditional physician-over-nurse hierarchy. Unusually for the time, Morrison insisted on an all-RN nursing staff, rather than a mix of RNs, LVNs and nursing assistants. His vision was to use a primary nursing model: each patient would have an RN who would be involved in all aspects of care, a concept that was just beginning to gain traction in hospitals. The model helped nursing begin to play the central role in care coordination and management it has today.
“Since the beginning, AIDS care has been a patient-centered model of care,” says UCSF School of Nursing Clinical Professor Suzan Stringari-Murray, who began working as a nurse practitioner in 1984 and served as the lead nurse practitioner and administrator for the Adult Immunodeficiency Clinic at UCSF, which evolved from the early Kaposi’s Sarcoma Clinic. “A team of support staff and professionals from different disciplines shared patient care.… And the focus was supporting the patient through the care trajectory…across a lot of different settings, from hospital to the clinic, and home care and hospice.”
On Ward 5B, Morrison harnessed nursing’s holistic, collaborative approach to care, including attending to the complex psychosocial needs of the patients. It incorporated many elements of what we now think of as basic palliative care. Staff helped patients prepare for family visits, which were frequently occasions for a patient’s coming out for the first time. Counselors from the community, particularly those from the Shanti Project, were integrated into care plans and provided support and practical help for patients being discharged.
This type of care became part of what is known as the San Francisco Model, and nursing was integral to it. It set the standard for HIV/AIDS care around the nation – and generated millions of dollars in public and private funding so others could replicate San Francisco’s successes.
“I like to say that early HIV/AIDS care predated and helped inform our current work around the patient-centered medical home and team-based care; it really helped to redefine how we deliver care,” says Stringari-Murray.
Bringing HIV/AIDS into the Nursing Curriculum
By February 1983, the Centers for Disease Control (CDC) had received 1,000 AIDS case reports; by the end of the year, that number had tripled. Patients’ symptoms and medical needs were complex; they were frightened and often very sick. San Francisco clinicians were overwhelmed – and there was a clear need for more training.
The AIDS content that Angie Lewis had begun incorporating into the staff education presentations she gave at UCSF eventually became a discrete nursing course, one of the first in the country, according to Carmen Portillo, chair of the Department of Community Health Systems and co-director of the UCSF International Center for HIV/AIDS Research and Clinical Training in Nursing.
Portillo, who arrived at the School from Arizona in 1990, hadn’t had much exposure to patients with HIV; the virus had been isolated in 1984, and the first blood test for HIV licensed in 1985. Nevertheless, her background in grief and bereavement led her to work with mothers whose sons had died of AIDS. Lewis convinced her to take over the HIV/AIDS course, which blossomed into a series of courses and eventually became one of the first nursing school programs in the world to focus specifically on HIV/AIDS.
Around the same time, Portillo began working with William Holzemer, another professor in the School of Nursing (now dean of Rutgers School of Nursing). Holzemer had begun his nursing career as the AIDS epidemic surfaced, and developed a particular interest in symptom management, stigma and quality-of-life issues for people with HIV.
He and Portillo created a series of proposals that garnered an important training grant from the National Institutes of Health. The grant was the foundation for the UCSF International Center for HIV/AIDS Research and Clinical Training in Nursing, a multidisciplinary research and education program dedicated to improving nursing care for people with and at risk for HIV. The center opened in 1991, with the mission of taking the expertise being developed at UCSF and other educational centers into the community, where clinicians were hard-pressed to keep up with the rapidly emerging research on HIV/AIDS.
Associate Professor Carol Dawson-Rose, who coordinates the School of Nursing’s master’s specialty in advanced practice public health nursing, came to UCSF for graduate training in 1990 specifically for its HIV/AIDS program. “I was from Los Angeles, and many of my gay male friends from the 1980s and pretty much my whole cohort from college is dead. It was so much a part of my life, I didn’t think I could do anything else,” she says.
After finishing her graduate work, she began teaching nurses, physicians, pharmacists and other health professionals as part of the Pacific AIDS Education and Training Center at UCSF, one of 11 regional centers that had been established around the country through the Ryan White CARE Act. She became part of an early cadre of nurse experts – including Holzemer, Portillo and Stringari-Murray – dedicated to expanding HIV/AIDS research and education throughout UCSF, the community and, ultimately, the world.
Nursing Research: Putting HIV/AIDS in a Broader Context
While Lewis, Morrison, Jones and other SFGH and UCSF nurses were working with their physician colleagues to understand the factors that were spreading the disease among the city’s gay male population, a young nurse named David Vlahov was seeing a different set of patients with similar symptoms at the University of Maryland Medical Center in Baltimore.
“The epidemic at that point was being described as among white, homosexual men, but the very first case we saw was a female African American injection drug user,” says Vlahov, now dean of UC San Francisco School of Nursing. “Some of the doctors I was working with weren’t sure it was AIDS because it didn’t fit the profile, [but] we came away saying, ‘This is going to be a much broader epidemic than anyone has imagined.’”
Looking at the bigger picture of the epidemic became Vlahov’s focus. He returned to Johns Hopkins to get a PhD in infectious disease epidemiology, focusing on the broad spectrum of people affected by AIDS, and risk factors for the illness. One of his early studies, AIDS Linked to the IntraVenous Experience (ALIVE), recruited 3,000 injection drug users in Baltimore who were not in treatment, and followed them every six months, looking at changes in the prevalence and rates of new HIV infection and the progress of the disease in that population. In the 26 years since the study began in 1988, ALIVE has expanded beyond Baltimore and spawned numerous other investigations into behavior, genetics, virology, immunology, and clinical and policy sciences that have advanced knowledge about HIV infection. The study has also been an important source of new information about substance abuse and mental health.
Vlahov served as the study’s principal investigator for 20 years before turning it over to another researcher he had mentored. “It was fascinating to put together so many great minds – people learning from each other, trying to solve the riddle.”
At UC San Francisco School of Nursing, nurse researchers also embarked on a wide-ranging research program, looking at everything from risk reduction and treatment adherence to the effects of stigma on caregivers. “I think UCSF really helped launch that area of research,” says Portillo. “There were probably a dozen or less nurse faculty across the country studying HIV/AIDS. We all knew each other.”
True to its name, UCSF’s International Center for HIV/AIDS Research and Clinical Training in Nursing and its nurse researchers and educators expanded their work across the globe, with research and training projects in places where HIV/AIDS was taking an enormous toll. The epidemic in these areas had a different trajectory than in the US – heterosexual and vertical transmission from mothers to infants played a much more significant role – which afforded researchers and clinicians enormous opportunities to learn about multiple aspects of the disease and how the virus spread.
Holzemer, Portillo and their colleagues recognized the importance of sharing information as widely as possible, and began an information-sharing network for clinicians and researchers, which has grown into the UCSF International Nursing Network for HIV/AIDS Research and conducts collaborative research projects around the globe.
The early commitment to HIV/AIDS research and teaching at UCSF has paid dividends down the line. Nurse researchers and clinicians mentored by the generation of pioneers have continued to have a significant impact on HIV/AIDS care.
Thomas Young, who moved to San Francisco in the 1980s and began work in the per-diem pool on Ward 5A (the successor to Ward 5B), found a group of experienced HIV/AIDS nurses who passed their knowledge and passion on to him. “Here I was, the first year out of nursing school, and these folks were mentoring us young folks into not only being part of the community, but part of a group that was not afraid to step up and do what others were not doing,” Young says. “I was exposed to this incredible group of nurse practitioners: Lauren Poole, Catherine Lyons, J.B. Molaghan and Gary Carr. They were so inspiring, and I wanted to be just like them.”
Young transitioned to Ward 86 as HIV/AIDS care started to become an outpatient specialty and met up with physician David French, who suggested he consider a research career. Young began working at SFGH with Paul Volberding on the trial of a new drug to treat HIV, azidothymidine, known as AZT, which was approved by the FDA in 1987.
He went on to work on Genentech’s HIV vaccine project and ran national HIV-related clinical trials for Kaiser Permanente. He ultimately returned to the School for a PhD and then was a nurse administrator for Ward 86 during a period of rapid change.
“The epidemic had changed,” says Young. “The way we approached care changed; the economics changed.” Addressing new infections and access to evolving treatments had become the watchwords. “Demographics and funding had changed. We had to figure out how to utilize all these resources efficiently.”
A Changing Epidemic, Changing Roles for Nurses
Among the most important changes was the development of drugs like AZT – approved by the FDA in 1987 – and, eight years later, highly active antiretroviral therapy (HAART), which brought welcome treatment options to people with HIV. Yet the early drugs’ toxicity meant that clinicians had to develop greater expertise in managing the often-severe side effects the drugs could induce. As HIV/AIDS nursing moved from the hospital to the clinic and the community, there began a push for more education and more advanced practice nurses to manage patients who were living longer with the help of complex drug regimens.
“In the beginning, HIV nursing was inpatient hospital care, with extremely sick, dying patients.… And it was primarily, but not exclusively, baccalaureate RNs who wanted to participate in continuing education about this new illness,” says Holzemer. “Then it moved to advanced practice training, which was then at the master’s level, and now the doctoral level.”
More challenges have emerged as newer drugs with fewer side effects and greater efficacy have transformed HIV into a manageable chronic illness. Clinicians, researchers and educators need to master an ever-expanding base of knowledge and skills to provide good care to people who are living longer. The comorbid conditions of aging, like heart disease and cancer, wind up complicating HIV management. Symptom management, drug adherence and quality-of-life issues have become as essential as T-cell counts for measuring the health of people with HIV, and these are areas in which nurses have long been deeply involved. “I think while medicine has done a great job looking for a cure, nursing’s lens has been more, ‘How do you help a person heal?’” says Vlahov.
That demands meeting people where they are and taking into account the psychological, economic and social factors that affect how patients approach their disease. While HIV in the US still predominantly affects men who have sex with men, the demographics are changing. In 2010, the Centers for Disease Control and Prevention (CDC) estimated that more than 30 percent of new HIV infections were among heterosexuals, including women and injection drug users. African Americans and Latinos are disproportionately affected.
In addition to its chronic care multidisciplinary HIV/AIDS program (CCHAMP), San Francisco General Hospital runs a group of specialized clinics as part of Ward 86’s Positive Health Program (PHP), designed to meet the needs of specific and underserved populations, such as African Americans, transgender adolescents, substance users, women and Latinos/Latinas, as well as the large HIV-positive cohort of men who have sex with men. PHP evolved from the clinics that had proliferated around the city in the 1990s.
Nurses play key clinical and administrative roles on Ward 86, which has a constant patient load of around 2,800 and operates under a panel model; each care team comprises a lead physician and nurse practitioner (NP), a social worker and a hospital assistant, which could be a nursing or medical assistant. Nurses – both NPs and RNs – provide much of the support and continuity for patients who are managing a lifelong chronic condition. Hicks says, “We get to know them really well and can help with any urgent issues that come up. When they talk to somebody in clinic, it’s somebody who knows them.”
The emphasis is on not just surviving, but living. There are the obvious things like making sure injection drug users have access to substance abuse programs and support, but there are also services that were unthinkable earlier in the epidemic. As people with HIV began to live long enough to consider having families, PHP’s perinatal AIDS center began to provide services to couples with an HIV-infected partner who want to conceive, focusing on how to minimize risk and keep families together in care.
Research Turns to Quality of Life
Looking at these types of quality-of-life issues for people with HIV has long been a focus of nursing research. Over the course of Holzemer’s career, for example, he has authored numerous peer-reviewed papers, contributed to and edited book chapters and advised international organizations on issues affecting quality of life for people with HIV. He has also mentored clinicians and researchers like Portillo, Stringari-Murray and Dawson-Rose, who continue to look for ways to ensure that all the needs of the diverse population of people with HIV are met.
Dawson-Rose looks at this approach as preventive care. “Addressing people’s needs actually promotes prevention of transmission,” she says. “We’ve never really dealt with the sexual health of women or men who are HIV-infected. Because of the stigma associated with HIV, it’s been hard for nurses and physicians to focus on the sexual health of people with HIV when sexual behavior is one of the conduits of transmission. Doctors and nurses have told them, ‘You just have to have sex with condoms.’”
Thus, her work includes US and international projects to train clinicians and health systems to address the full spectrum of needs of people who are living longer with HIV. “For example, we can acknowledge that these patients want relationships and to start families, that they want children, and we can look to educating our nursing workforce on how to support people to have what they want safely, without harming their health or transmitting HIV to others.”
Adam Carrico, clinical health psychologist and assistant professor of nursing in the Department of Community Health Systems, addresses the needs of a different cohort, studying HIV-positive individuals who use stimulants such as methamphetamine. The trials he worked on in graduate school specifically excluded drug users. “I got really good at detecting drug use and linking people to treatment,” he says. “I also got interested in substance use as a co-occurring chronic illness in HIV that has potentially negative effects on how well people manage their disease.”
Carrico notes that drug users have great difficulty accessing care, in part because of stigma. His research program examines ways to optimize health outcomes and reduce risk of onward HIV transmission by integrating behavioral and biomedical treatment approaches with HIV-positive stimulant users, particularly men who have sex with men.
Keeping People Connected to Care
Addressing quality of life and psychosocial barriers to care ties in with one of the primary goals of current HIV/AIDS nursing – getting people plugged into treatment early and keeping them engaged with the health care system. Says Stringari-Murray, “The populations that are affected by HIV/AIDS tend to be very stigmatized and underserved; they have difficulty accessing and engaging in care.”
The Positive Health Program tries to address that with their comprehensive care and specialized clinics, but getting people engaged with care also requires reaching out to at-risk communities. Jonathan Van Nuys, who became a nurse practitioner after his own HIV diagnosis brought him face-to-face with the stigma and shame that it still carries, is part of a new generation of nurses who are as passionate as their predecessors about changing the course of the epidemic by connecting with the underserved. “I really wanted to do something where I could work with people one-on-one, where I could be there for other people struggling with the stigma of HIV,” he says.
East Bay AIDS Center (EBAC) in January 2014, where he provides care to the largely underserved HIV-positive population of Oakland. EBAC is one of the only places in the East Bay that offers full-time, drop-in sexual health services, with an emphasis on information and choices. In addition to HIV testing and treatment, patients get education on HIV and other sexually transmitted infections (STIs), and HIV-positive individuals get judgment-free guidance.He entered the master’s entry program in nursing (MEPN) at the School because of the HIV focus track. After finishing in June 2013 and working for the VA for several months, he moved to the
“We support people in whatever they choose, whether it’s going on PrEP [pre-exposure prophylaxis] or using condoms or just knowing about how you get HIV and how you don’t,” says Van Nuys. “There’s a lot of opportunity for setting up a positive relationship with health care for people who maybe haven’t been that engaged.”
Van Nuys is also the primary clinician on a study, Connecting Resources for Urban Sexual Health (CRUSH), looking at improving the sexual health of youth of color in the community. The work focuses on two areas: engaging HIV-positive youth in care, and promoting sexual health in those that are HIV-negative, including a demonstration project on PrEP.
Van Nuys is just one of a new generation of nurses who have benefited from the hard-won expertise of teachers and mentors at UC San Francisco School of Nursing. Since its inception, the School’s HIV/AIDS program has trained approximately one hundred nurse clinicians and HIV/AIDS specialists, including Erin Lutes and Mary Shiels, clinical nurse specialists working with HIV-positive patients in Bay Area clinics; Emiko Kamitani, working with the CDC on HIV issues in communities of color; and nurse practitioner Brooke Finkmoore, a 2014 graduate working as a Global Health Nurse Fellow in Haiti. This new generation is carrying a legacy of compassionate and informed HIV/AIDS care around the world.
Moving Forward – New Challenges
Changing the course of the HIV/AIDS epidemic has taken a monumental effort that started with the work of small bands of passionate, committed individuals and turned into an international network of nurses, physicians, scientists and activists. UC San Francisco and its many clinical partners have been at the heart of enormous, impressive progress – both in using research to advance the care and in training providers to deliver that care.
Despite the many successes, there are new hurdles to overcome.
The CDC projects that by 2015, more than 50 percent of the population living with HIV will be age 50 or older, which puts an additional strain on health care and social systems that are already grappling with an older, sicker America. As Suzan Stringari-Murray says, “We have to know going forward, what are the best practices [for dealing with this population]? Do we have systems in place to help older HIV-positive adults?”
Ensuring that future clinicians are equipped to manage the complexities of caring for HIV-positive patients of all ages is challenging, and one of the most significant barriers is lack of competency among primary care providers, according to a 2013 survey of 371 primary care providers in the US (including nurses, physicians and other clinicians) conducted by the health advocacy organization HealthHIV. One reason is that, UCSF notwithstanding, HIV content isn’t often integrated into training, says Stringari-Murray, “HIV content in prelicensure and even graduate curricula [is] pretty minimal.”
Christopher Fox, a 2013 graduate of the HIV/AIDS specialty and assistant clinical professor in the School, says, “At the same time, we have more people coming into care with the Affordable Care Act, an aging population, plus people on viral suppressant therapy for HIV who are going to live a normal life span. We need to bring in the new guard of primary care providers.”Moreover, the HIV workforce is aging. The survey found that the majority of those who provide HIV care are age 50 or older, meaning that those with the greatest expertise are on the cusp of retirement.
As one of the “new guard,” Fox is focusing on bringing HIV content into primary care programs. “We’re trying to figure out what the curriculum or competencies should be for nurse practitioners or nurse practitioner students,” he says. In addition to teaching HIV content in the School, he is among the clinicians and educators working with Portillo on a five-year project funded by a grant from the Health Resources and Services Administration to train about 50 advanced practice nursing students per year in the skills and strategies they’ll need.
Portillo plans to use the program as a springboard to help other nursing faculty in the region learn how to incorporate more HIV content into their programs. “We really need to make sure our workforce is able to take care of people with HIV/AIDS,” she says.
Continuing interest in HIV/AIDS nursing has kept it front and center at UCSF, and the tradition that started with Lewis and Jones, Holzemer and Portillo, and all the other trailblazers moves forward with young clinicians and researchers like Van Nuys, Fox and Carrico. There is a sense of community among HIV caregivers and patients that endures. “Consistency and visibility,” says Carol Dawson-Rose when asked what has made the most impact in HIV/AIDS care. “People are in it for the long haul.”
For more on UCSF and San Francisco’s response to the early AIDS epidemic, including the reflections of Lewis, Jones and Morrison, see the AIDS Oral History Projects, a collaborative work by the Regional Oral History Office at the Bancroft Library, University of California, Berkeley; the Department of the History of Health Sciences, University of California, San Francisco; and the UCSF Library and Center for Knowledge Management.