By now, you may have seen the movie, 5B, released this past summer. It is a documentary film that tells the inspirational story of the nurses and others who built Ward 5B in 1983 at San Francisco General Hospital. They volunteered to work on the unit and create an environment based on humanity and holistic well-being during a time of great uncertainty. We are thrilled to welcome three of the nurses responsible for creating that patient-centered space to our annual conference, ANAC2019, to be held between November 7 and 9, 2019, in Portland, Oregon. Thanks to support from Johnson & Johnson, we will be screening 5B at the conference, followed by a panel discussion with Allison Moed, Cliff Morrison, and Guy Vandenberg, facilitated by Bill Mannion. All were early ANAC nurses, helping to found our organization based on evidence-based nursing practice that has compassionate patient-centered care at its core.
Watching the movie, I was reminded of the tremendous compassion and innovation that nurses demonstrated in the early days of the HIV epidemic. The notion of holistic care that included not only the physical but also the mental and spiritual aspects of care emerged through the responses to the HIV epidemic. Seeing and responding to the whole person, not just seeing them as patients or their diagnosis, is now the expectation throughout health care. But this was not the norm in the past, and HIV nurses led the way in this change in approaches to care.
It was a different time. Ward 5B was the first HIV-designated unit-in the city most affected by the unknown virus-serving a community of gay men, hurt by prejudice, fear, family rejection, and loss. And shortly thereafter, nurses in cities across the country were setting up HIV services and units, following the lead of Cliff and Allison and 5B. We were pretty certain HIV was blood borne and sexually transmitted, but the modes of transmission were not fully known. Families and friends asked whether it was safe to work in an HIV unit. Frankly, we were not sure, but we had no choice. Patients needed care, and we needed to fight stigma and prejudice with calm reassurance. Nurses often were called to community or school meetings to provide education and allay fears of scared and sometimes angry people. We were not just at the bedside or clinic; we were becoming public health and human rights advocates, too. Nurses joined with other advocates, educating patients about research and enrolling people in HIV clinical trials as quickly as they could. All along, we hoped that we could keep building treatment bridges until more effective medicines with fewer side effects were available. And now there are.
I have written this from IAS2019, the International AIDS Conference in Mexico City, held between July 21 and 24, 2019. Advances in HIV treatment and prevention continue to move forward at a rapid pace. Prevention highlights presented at IAS2019 included the latest research on the first human trial of an implant designed to provide HIV pre-exposure prophylaxis (PrEP) for a full year; other studies looked at new and potentially more effective PrEP drugs and other delivery methods such as vaginal rings and long-acting injectables. Treatment studies presented at IAS2019 showed a lower risk of neural tube defects associated with dolutegravir used during pregnancy than previously reported and helped inform updated World Health Organization guidelines on antiretroviral therapy. Sessions also examined the results of the ECHO trial and answered questions about contraceptive safety, while detailing the startling HIV rates in young women and girls in all arms of the study.
Probably most notable to me was a development I do not usually hear. I have attended many sessions at international HIV conferences and, unless the session was organized by nurses, the contributions of nurses were usually not acknowledged although nurses/midwives make up nearly 80% of the global health care workforce and deliver a significant amount of HIV care and treatment around the world (https://www.huffpost.com/entry/international-nurses-week_b_1499802). But this is changing. In one session I attended, the success of nurse-led PrEP programs was acknowledged by non-nurse speakers in four separate presentations!
The impact of stigma and the significance of the Undetectable=Untransmittable (U=U) campaign were evident throughout the conference in presentations and discussions. External stigma (demonstrated by others) often reflects pre-existing prejudice based on race, sexuality, or gender and manifests in an unnecessary fear of HIV. Sadly, this still exists in health care settings across the globe. Internalized HIV stigma can be intensely personal, sometimes not even fully recognized by the person living with HIV (PLWH), but can result in deep feelings of shame and depression manifested in isolation, withdrawal from social situations, and lack of self-care, including engagement in health care. A deeper examination of the various aspects and impacts of stigma can be found in the IAS annual letter (https://www.iasociety.org/Who-we-are/About-the-IAS/Annual-Letter-2019).
Educating our communities on the evidence and importance of the U=U campaign (https://www.preventionaccess.org/) is a critical role for nurses. The message of U=U means that achieving and sustaining an undetectable HIV viral load equals no risk of sexual transmission of HIV. This message, based on strong scientific evidence (https://www.cdc.gov/hiv/pdf/risk/art/cdc-hiv-art-viral-suppression.pdf), has been endorsed by the Centers for Disease Control and Prevention, National Institutes of Health, HIV Medical Association, and ANAC. It has broad implications for the treatment of HIV infection from a public health standpoint and, perhaps most importantly, for the self-esteem of individuals by reducing some of the self-stigma associated with HIV. It also should have implications for some aspects of HIV criminalization.
The message of U=U is a powerful message for PLWH. Unfortunately, very few providers share this information with their patients. ANAC joined with other provider organizations as part of a Centers for Disease Control and Prevention campaign (https://www.cdc.gov/hiv/basics/livingwithhiv/index.html) to promote this message. Nurses have a special role as a trusted source of health information. We can improve health literacy with this message not only in clinics and classrooms but also with families and friends and through other touch points. I talk about this with the driver every time I am in an Uber, it is a great way to chip away at stigma.
Just as we did in the early days of the HIV epidemic, nurses provide education about the value of research and participation opportunities to our communities. Understanding concerns about past research approaches, while acknowledging the importance of inclusion and diversity in research, is an integral part of the All of Us Research Program. ANAC is a proud partner of the All of US, a historic effort led by the National Institutes of Health to gather data from one million or more people living in the United States to accelerate research and improve health. By considering individual differences in lifestyle, environment, and biology, researchers will uncover paths toward delivering precision medicine.
ANAC joined the All of Us Research Program to ensure PLWH and other underrepresented individuals are well represented in the initiative. The program is open to people, both healthy and sick, from all communities. Unlike a single research study focused on a specific disease or population, All of Us will serve as a national resource for thousands of studies, covering a wide variety of health conditions. This is important to PLWH as they age and encounter other diseases such as diabetes, cardiovascular diseases, and other chronic conditions. Being included in general health research could also be a stigma reducer. Although not part of our original motivation for joining, this notion is taking on more credence as we think about various approaches to reducing external and internal stigma.
ANAC is participating with other nursing organizations in national efforts to shine a light on the special role that nurses have in research by educating our members about All of Us. It is also an opportunity to enroll ourselves. It is a great insight into the tremendous contributions our patients have made to clinical research. I enrolled and it is easy and all online (https://www.joinallofus.org/en). But in doing so, I realized I owe a big thank you and acknowledgment to all of those who have ever participated in trials. The bravery and commitment of those who participated in early clinical trials is a debt that we owe them for starting the amazing HIV treatment and prevention advances available today.
Viewing 5B in the context of current research and advances in treatment and prevention is a powerful experience. Acknowledging the many nurses who have worked along that continuum is an important and overdue event. I look forward to sharing that with you. There are moments triggered by the film where we will remember and honor individual patients, many who did not make it. In that moment, I hope that you can also remember the little acts of compassionate care that you provided, making a big difference to your patient. For nurses, that can be difficult to recall because-well [horizontal ellipsis] it is what we do.