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Pandemic Nursing: Forty Years of Advocacy

To honor and elevate the history and relevance of providing care with love to populations that have been stigmatized or marginalized, we invited a guest author, Kristopher J. Jackson, to share his voice on the COVID-19 and AIDS crisis. 

Kristopher J. Jackson, MSN, ACNPC-AG, CCRN
PhD Candidate, University of New Mexico College of Nursing, Albuquerque, NM
Acute Care Nurse Practitioner, UCSF Medical Center, San Francisco, CA

“Across the United States, wards of patients admitted to the hospital with an unusual pneumonia became more commonplace. Little was known about these patients’ condition, their projected illness course, or how to treat them.”

For those who have worked in the acute care setting during the last fifteen months, these statements certainly sound as though they were intended to describe the thousands of Americans hospitalized with severe COVID-19. However, the sequestration of patients afflicted with a poorly understood viral illness is not a novel practice. For those in clinical practice four decades ago, many may recall a different viral illness that created similar panic and confusion among healthcare professionals: the beginning of the AIDS epidemic. Undoubtedly, AIDS patients who presented with pneumocystis pneumonia in the 1980’s differed clinically from present-day COVID-19 patients today in a myriad of ways. Clinically speaking, the two diseases have almost nothing in common at all. Despite the overwhelming number of differences between AIDS and COVID-19 as clinical entities, there are some poignant similarities in the American public’s reaction to these two pandemics and they tend share a common theme: a fear of the unknown.

As both pandemics began to ravage communities in the United States, providers and public health officials found themselves having to answer challenging questions: How is the virus spread? How do nurses, providers, and hospital staff care for a patient with a potentially deadly disease? What protective equipment do providers need to take care of these patients? Who should take care of these patients? Meanwhile, the American public had many questions of its own: How do we protect ourselves? Where did this virus start? Who is to blame? Who should we ostracize? As both pandemics began to jeopardize the “American way of life,” fear and anxiety plagued a nation.

In the early 1980’s, more patients died from a disease initially referred to by scientists as “gay related immune deficiency” or “GRID” and – more colloquially – “gay cancer.” In 1982, one particularly reprehensible reporter and White House correspondent, Lester Kinsolving, once mockingly referred to the disease as the “gay plague” in a press conference with former President Ronald Regan’s acting press secretary, Larry Speakes. Despite the thousands of American deaths, Kinsolving’s remarks were met with jokes and laughter by members of the White House press corps. While reporters and government officials in Washington D.C. amused themselves with commentary about those suffering and dying from AIDS, these patients were being abandoned and spurned by their families and communities. Fearing what they did not understand, some physicians and nurses refused to see or care for patients living with the virus. Other members of the American public felt an HIV diagnosis was some sort of karmic punishment for the gay men and intravenous drug users that contracted the first cases of the disease. These are beliefs that, to this day, remain deeply embedded into the very fiber of some sects of American society.

Nearly forty years later, in December 2019, early reports emerged of a bizarre coronavirus-associated pneumonia in China. As the World Health Organization and international public health experts began to investigate this new virus in the weeks that followed, the American public prepared a response of its own. Videos of Asians or individuals of Asian descent consuming bats or “bat soup” plagued the internet. Much like the early years of the AIDS epidemic, the American “way of life” was in jeopardy and the American people needed to hold someone accountable. Former President Donald Trump would later come to refer to COVID-19 using a variety of derogatory, xenophobic, anti-Asian epithets including: “China virus,” “Wuhan virus,” “China plague,” and the “Kung-Flu.” As the leader of the free world ‘dialed-up’ his anti-Asian rhetoric to provide Americans a target for their rage, Asian-Americans faced more violence and more racism; hate crimes committed against Asian-Americans became more commonplace.

While decades apart, the early failures and relative inaction of the executive branch of the U.S. Federal Government during the beginning of both the HIV/AIDS and COVID-19 pandemics are well documented. The first cases of HIV surfaced in 1981 and the virus itself was isolated in 1983. Sadly, President Ronald Regan would not publicly utter the word “AIDS” until 1985. According to the Centers for Disease Control, more than 50,000 Americans would be diagnosed with HIV between 1981 and 1987 when President Regan formed the Watkin’s Commission to investigate the AIDS epidemic. More than 95% of Americans diagnosed with HIV as a result of President Regan’s flagrant disregard for the disease died during this same period.

In early 2020, as international public health experts warned of the severity and virulence of the novel coronavirus, the executive branch of the federal government failed to heed these warnings. However, perhaps more disturbing, is that former President Donald Trump offered the American people false assurance and abject lies. On April 7th, 2020, President Trump told the American people: "…so, you know, things are happening. It's a -- it's -- I haven't seen bad. I've not seen bad." The day before this announcement, the death toll of Americans who had succumbed to COVID-19 surpassed 10,000. By April 11th, more than 20,000 lives had been lost to COVID-19. The Federal Government also failed to issue a federal mask mandate or mandatory guidelines regarding social distancing, instead allowing individual states to choose how they would respond to this public health emergency. This leadership failure translated to a highly partisan response to a deadly virus, as well as unnecessary death and human suffering. To date, nearly 600,000 Americans have died as a result of COVID-19.

Despite the early failures of the U.S. Government to lead or act during either of these viral pandemics, everyday heroes worked to answer the desperate calls for help from patients, providers, and their communities. One of the first specialized AIDS wards in the country was opened at San Francisco General Hospital using an all-volunteer nursing staff. Shortly after the formation of Gay Men’s Health Crisis in New York City, the oldest AIDS organization in the United States, nurses offered volunteers trainings on basic caretaking skills. Over time, as HIV care transitioned to the outpatient setting and overburdened clinics, advanced practice nurses answered these calls for help and now play an integral role in the treatment and management of HIV in the United States today. Decades later, as COVID-19 wreaked havoc across New York City, more nurses answered pleas for volunteer assistance in the city’s overburdened hospitals than could be processed. During the last year, nurses across the United States stepped out of their outpatient clinics and lower acuity settings and into makeshift intensive care units to care for our country’s sickest and most vulnerable patients.

The AIDS and COVID-19 pandemics are merely two examples of public health emergencies where nurses have worked —proudly — on the front lines in their communities. While government leaders and policymakers may have been slow to respond to these crises, nurses were among the first to care and advocate for these vulnerable patients. Unfortunately, new threats to public health continue to emerge, almost daily, that further jeopardize the status of sexual and reproductive health care in America. Unlike AIDS or COVID-19, we as nurses know what these threats look like; we know how these threats will adversely affect the health and well-being of our patients. Taken together, these crises represent public health emergencies that require the same diligence and commitment to our patients that we have shown throughout history. The future of person-centered, quality sexual and reproductive health care in the United States rests on our shoulders.

Care During Crisis

The following is a summary of a conversation between Victoria Fletcher, MSN, ARNP, FACNM and Nikki Duffney, NSRH Director of Membership about the similarities from her history and lived experiences between the HIV/AIDS crisis and the COVID-19 pandemic. Edits have been made for length and clarity.

Victoria Fletcher, MSN, ARNP, FACNM is a certified nurse-midwife, NSRH founding member, and NSRH board member. She was contracted in 1990 to provide health education to healthcare professionals in the beginning of the HIV/AIDS crisis. Topics included etiology, transmission, prevention, treatment and caring for patients with HIV/AIDS. We sat down with her to discuss her experience working in healthcare during the HIV/AIDS crisis and COVID-19 pandemic, and what similarities and differences she has noticed between the two.

In the early days of the HIV/AIDS crisis and the COVID pandemic when little information was known, it invoked similar human reactions: stigma, shame, and fear. Health outcomes were driven by lack of evidenced based information, limited access to care, and health disparities. There are overlapping emotions that came to light as these two very different pathogens took hold of populations:

Stigma

Stigma toward the population that seemingly started it or had/has the highest incidence of infection was felt during both crises. HIV/AIDS saw initial stigma pointed at gay men and the LGBTQ populations, and Chinese people and government had the global finger pointing at them as the source or reason for the COVID-19 pandemic. Some even called COVID the “Chinese” virus, which can be directly tied to the increase in Asian-American Pacific Islander hate crimes.

Unknown transmission

At first, people didn’t know how HIV/AIDS or COVID-19 was transmitted and this ignorance led to fear, wide-ranging theories of transmission, and irrational ways to prevent transmission and to treat the diseases. Since there was early information about HIV/AIDS compromising immune function, the first AIDS patients who were hospitalized were cared for in protective isolation; staff and visitors had to gown and glove before entering their rooms to prevent a vulnerable person from contracting infections from staff or visitors. This changed as people received effective treatment for HIV/AIDS, hospitalizations were decreased and severe immune compromise avoided.

Having celebrities and athletes testing positive for HIV/AIDS gave the general population a different perspective on who could get the virus and how the virus could be transmitted. Magic Johnson, a pro-basketball player and considered a vision of health, revealed his status in 1991. Freddie Mercury died from AIDS related illnesses in 1992, the same year pro-tennis player Arthur Ashe’s status was revealed and traced to a blood transfusion. One year later Philadelphia, the first major Hollywood production on the topic of AIDS, was released.

Actor Tom Hanks contracted COVID-19 while filming in Australia in March, 2020. A study found that public opinion surrounding the then-new coronavirus shifted after he was diagnosed, with some individuals taking the coronavirus more seriously as a result. Most participants wrote that the virus now seemed like more of a serious threat in their minds, and one said they felt “panicked” because Hanks “is rich and protected. He can get it. Anyone can get it.” (source: Huffington Post, 2/6/21)

Lack of education

There was a surprising lack of education and research available to professionals. Treatment options available in both the AIDS crisis and the pandemic were under-shared and left people uncertain about their options. Studies have shown that it can take up to 10 years for new medical guidelines and practice standards to reach doctors and nurses and become the standard of care. That timeline must be shortened, as we don’t have the luxury of time in situations like the AIDS crisis or COVID-19.

With COVID, there is a similar lack of information about transmission and treatments. There are Rx options like monoclonal antibodies for people who test positive that could lessen the virus’ impact and prevent hospitalization and death. Many healthcare providers and potential recipients don’t know about this option, and the treatment modality is not universally available throughout the US. Where is the standardized training related to COVID-19? What education and training needs to be mandated and required for all healthcare workers?

I wish I could believe that similar diseases are not on the horizon and it would be another lifetime before we encounter novel diseases such as the two discussed above. What is needed are rapid cycle strategies to identify new potentially devastating infectious diseases, mechanisms to crack the code on mode of transmission, identify prevention modalities and evidenced based treatment options. Also required is a clear, accurate communication plan for healthcare professionals and the general public especially the most vulnerable populations. We need to broaden our definition of emergency response to include protracted crises that last several months or even years. If we can accomplish this and reside in a state of perpetual readiness, then there is hope that we can learn from past experiences and improve response to the next pandemic or crisis.

This story is shared to capture the personal experience and feelings of a nursing professional that has offered support and care through these two unique and difficult periods. 

Do you have a story to tell? We welcome you to submit your story or blog idea to us so we can feature you in our newsletter or on our blog. Email us at [email protected] or message us on social media @NursesforSRH.

How to Network to Build Community

Networking, community, connection, synergy, contacts, friends, colleagues, comrades, buddies, or companions. We have so many names and ways to categorize connectivity with other people, yet the basics of how to make friends and build relationships can be challenging for many of us. Why do some people buzz in the middle of the room or have a large presence on social media? Is it because they are better in some way than others? I think not; they have often done the hard work at some point in creating their community intentionally, and I’d like to share a few ideas of how this can be done.

Networking plays an important role for nurses. From attaining that clinical rotation and building a network of nurses to support each other in getting jobs, to specific needs like having a doctor vouch for you when working on a complicated medical case if you are an APRN. Networking in nursing can even affect how people are able to get care. Not to mention, nurses need community! When you’ve worked three back-to-back 12 hour shifts, it’s important to have people in your corner who understand what you are going through.

Here are 3 ideas that may be helpful in your work or social space to expand your community intentionally. 

  1. Show up in the places that bring like minded people together.
    • This can feel overwhelming at first since you could be showing up to a room full of people you don’t know (yet!). Take this first step and ease into connecting with others by asking questions, sharing experiences, or offering to help.
  2. Start asking questions.
    • Learning the group norms by asking questions can help set us up for success when building relationships. By understanding how the community interacts with each other, we are more likely to connect with others quickly.
    • Once comfortable with asking group questions, start asking people relationship building questions. These questions don’t need to be too personal; start with more generic, accessible topics. Easy examples can be:
      • What brought you to this group?
      • What do you do with your time outside of this group?
      • Why do you like to participate with this group?
    • Remember that we are all experts at ourselves, so asking someone an open ended question about who they are can show you some of the important factors in their life. We can ask about family, pets, hobbies, or sports & recreation.
  3. Be direct and ask plainly for your needs.
    • If you are looking to build a dynamic relationship that involves exchange of information or mentor/mentee opportunities, go directly for it!
    • Be transparent about your goals and interests
    • Ask pointed questions that get you results, that could be “What is your biggest challenge outside of time or money?”

Lastly, meeting new people and tending to young relationships is FUN! It can feel a lot like dating, and there is potential for let down or disappointment; however, the connectivity with a community reaps such great rewards. It is worth the minor risk.

Wondering where you can build community with like minded people? Join the NSRH membership to gain access to a trusted community of nurses disrupting the status quo to serve patients with dignity and care. We are here to support you.