Looking Back to Look Forward

Abstract

In 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