Guest Commentary JANAC Vol. 15, No. 5, September/October 2004 10.1177/1055329004269089 Starr / Looking Back to Look Forward
Looking Back to Look Forward Greg Starr, MSN, RN, ACRN
n reading Richard Sowell’s editorial in a recent issue of JANAC (May/June 2004), I was moved to sit down at my computer and put my thoughts and feelings in what could be called an extremely condensed version of my experiences working with persons with HIV/ AIDS over the past two decades. Dr. Sowell’s passionate words in favor of a comprehensive global approach to HIV/AIDS care for all world citizens sparked my personal memories to the appearance of HIV/AIDS in the United States, when it was thought to be a disease reserved for a select group of people within our national borders. My work in HIV/AIDS goes back to Los Angeles, California, in January 1982, where as a fairly green oncology RN, I was introduced to the first known GRID (the nomenclature for what we now know as Acquired Immune Deficiency Syndrome was then known as Gay-Related Immune Deficiency) patient brought to my hospital. Prior to this period, the media and public called it “gay cancer,” due to the Kaposi’s sarcoma lesions that were noted in many of the presenting patients. The disease we now know as AIDS was soon revised from “gay cancer” to GRID, although publicly it was also called the “gay plague.” Early on in the reporting of this illness, the disease was presenting only in gay males. It was later in 1982 that the AIDS designation was coined by the Centers for Disease Control and Prevention (CDC), as the disease process was found in people other than those in the gay community, such as heterosexual men and women, hemophiliacs, and those using intravenous drugs. It was to be yet another year before the codiscovery of HIV (Human Immunodeficiency Syndrome), the causal agent of the disease state, by Luc Montagnier, MD, of the Pasteur Institute in France and Robert Gallo, MD, of the National Institutes of Health in the United States.
Back at my unit in early 1982, the stated reason for the patient’s admission to the oncology floor was simple: The patient showed signs of immunosuppression, just as the chemotherapy-treated oncology patient would. It seemed logical to those in charge of patient care to place the patient on the oncology floor. Total isolation was ordered for the patient, and because there were two negative-pressure rooms on the oncology floor, we were tapped. The nurse manager immediately asked nurses to “volunteer” to work with the new patient, as there was a great deal of fear among the staff regarding the communicability of this new disease. The stories many of you remember, or those of you who are too young have heard of and/or read about, describing the irrational fears of many health care professionals and the general public at the time are unfortunately, in many cases, quite true. It was promised to the staff that did volunteer that a hospital psychologist would hold regular group meetings to allow us to vent our concerns, fears, and feelings if we chose to take care of the GRID patients. This was a time long before laws such as the Americans With Disabilities Act, which was signed by President George H. W. Bush in 1990. Staff members, including nurses, doctors, nursing attendants, and all other ancillary staff were not compelled to care for this particular category of patient; thus, necessary care could, and sometimes did, fall by the wayside if a willing and/or compassionate staff member was not available. There were indeed staff members (including nurses) who dressed-up in so-called “moon suits” to give even the simplest of care to the GRID/AIDS patient, such as taking a paper dinner tray in to the room. It was as if the care provider was literally taking a space walk, anticipating contact with a species from another planet. I witnessed instances of family members of nurses coming to the hospital floor and
JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 15, No. 5, September/October 2004, 71-73 DOI: 10.1177/1055329004269089 Copyright © 2004 Association of Nurses in AIDS Care
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demanding that their loved one stop working with those affected by GRID/AIDS for fear that they might well bring the disease home and spread it among the family. I never understood at the time the ease with which some physicians and nurses disregarded their Hippocratic oath and Nightingale pledge. All this time, as a volunteer myself, my colleagues and I were wearing latex gloves when caring for our patients, although we did put on a gown and mask if a patient was on respiratory precautions, actively bleeding, or had a great deal of diarrhea due to any host of gastrointestinal opportunistic infections. Considering the panic and fear in the United States at the time regarding GRID/AIDS, imagine the concern of the staff nurses and others, including patient family members and friends, and then consider the feelings of the patient affected with this dreaded disease. I will not say that I was not fearful myself. I was. However, as an openly gay man, I felt that if this “gay disease” had been out there for sometime, I might well be ill myself, so taking care of those who most needed my skills seemed a necessity and the right thing to do. I was afraid at times, but I was determined. I was a fairly new registered nurse who felt that no matter what the assignment presented to me in my role as a staff nurse, it was my duty to carry it out to the best of my ability. I was young, full of fervor for nursing (which happily remains today), and felt, as a gay man, that it was somehow a giving back to a community of people who had taken me in with care and acceptance when I took the great personal step to “come out” and acknowledge my sexual orientation. I saw the faces of my friends and mentors in the ever-growing succession of admissions (and yes, some of our patients eventually and inevitably were women) and was committed to caring for my community but also, as always, to the greater community in all its diversity. To have been a new nurse at that particular time and place was auspicious. I feel absolutely fortunate to have been given such a challenge in my career and personal life. Granted, there were many difficult times for me and thousands of nursing colleagues across the country, but that situation paled in comparison to what our patients had to deal with. The widespread panic in the country, which was fueled by the often sketchy information on the disease available from the federal government, taken and then irresponsibly whipped up
into a frenzy by some in the news media, was a fact of daily life. I clearly remember caring for a young man with a diagnosis of Kaposi’s sarcoma whose outward symptoms presented as large, purplish raised cutaneous lesions over much of his body, but the lesions were also internally widespread, causing great abdominal distress, bleeding, and diarrhea. He was losing weight quickly and was ashamed of his inability to get to the bedside commode in time prior to bouts of explosive and sometimes bloody diarrhea. He was weak and at the end of his rope emotionally. On one particular night as I was taking care of this patient, a television news brief came on prior to the late night news program stating that persons with AIDS were spreading the disease knowingly and casually among the public. I stood slack-jawed as I took these words in, but I was immediately concerned for my patient who had also heard the television announcement. He broke down crying, once again shamed because he was suffering with this horrible disease and bore the stigma in a very identifiable way. The television news writers and the announcer did not know this patient and clearly did not think that someone with the disease mattered enough to think about modifying the script in consideration of those living with AIDS. I finished my care and immediately strode to the phone. I obtained the phone number for the local television affiliate that had aired the statement and asked to speak with the news director. He came to the phone, and I calmly let him know my position as a registered nurse and the patients that I took care of on my unit. I politely told him that I took exception with the style and wording of the news brief, which was clearly not based in science and seemed calculated to get more viewers to watch the news later on in the evening. I asked if in the future, he and his news writers could take more care in previewing the news, knowing that many persons living with HIV/ AIDS, their families, and their friends would be watching and would be greatly concerned, not to mention the general public who already had very little information on the disease and were likely to be frightened to a greater degree. His response was none too pleasant. In effect, he told me that he believed that the disease was indeed passed casually, and he felt it was his duty to put such warnings out to the public. He showed no sign of care or respect for those who were
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truly suffering mightily with the disease (remember, antiretrovirals and prophylaxis for the more common opportunistic infections were not yet tested or available, and thus progression from diagnosis of symptomatic disease to death was relatively quick in the majority of patients. There wasn’t even an HIV antibody test available until 1985!), and he made it clear that he would continue to warn the community at large of this terrible threat. I was surprised at his attitude but not completely shocked. The atmosphere at the time was one of too little information from the CDC, no treatments, an unresponsive elected federal government, and an atmosphere of ignorance and fear across the United States. I had no answer or comfort for my patient that night as to why that television station in Los Angeles chose to spread fear in such an irresponsible manner. I lacked the power and ability to make it all better for him and many other hundreds of patients I took care of in the early years of the pandemic. All I knew was that I could, at least on a local patient-bypatient basis, try to make their lives more comfortable, in what was equivalent at the time to hospice care. We sit on the threshold of making many of the same errors in judgment that were made at the genesis of the appearance of HIV/AIDS among us. We are certainly much farther along in confronting the disease, through funding of the Ryan White Care Act, numerous privately funded national initiatives to combat ignorance of the disease in diverse communities, and many locallevel organizations to educate and assist persons living with HIV/AIDS, along with their families and friends. One thing we seem to lack in this country is the insight and ability to look outward to our brothers and sisters living in both other Western-style democracies and, even more important, developing countries with little or no health care. We must, as individual nurses
dedicated to the care of those living with HIV/AIDS, actively promote local, state, and federal funding to go to the care of those outside our borders while taking care to continue the battle against HIV/AIDS in our communities and in our country. We are the richest and most technologically advanced country in the world, and exactly because of those two gifts, we are morally bound to help those who seem to have no real hope of improving their situation in the greater world community. We have choices, whether it is contributing funds or volunteering your time to an HIV/AIDS organization or perhaps taking an HIV/AIDS update course and taking the information back to your home, hospital, clinic, school, or community. For some who have the desire, traveling to countries in need to see firsthand the devastation of HIV/AIDS outside our borders is essential, so that we can begin to understand the “oneness” that we share with our fellow women and men around the world, and through that experience, we can work to improve and heal, if only on a very small scale, the physical, psychological, and spiritual terror this powerful virus promulgates without exception, across boundaries of sex, economic, and religious status or political affiliation. As nurses and members of the Association of Nurses in AIDS Care, it is up to us to be leaders in the need to globalize the fight against HIV/AIDS in the minds of the citizens and politicians of the United States. Working as a nation with the World Health Organization to help those who cannot help themselves, we will ultimately receive the personal satisfaction that comes with such service but, more important, the personal affirmation of our moral compass that tells us we are doing something truly good that will translate to a healthier and safer world, one that truly has no borders.