The following excerpt is from Paging Doctor Leff: Pride, Patriotism & Protest. Paging Doctor Leff is the biography of an idealistic boy from New York who joined the Civil Air Patrol for God and country and never looked back. Dr. Arnie Leff, MD has fought many wars, overseas and at home. He stood up to his superiors in the Air Force during Viet Nam; locked horns with corporations and state bureaucracies as health commissioner of Cincinnati; jumped into the trenches at the beginning of the AIDS pandemic; and has pulled no punches with his often controversial opinions about drugs, euthanasia, health care and medical marijuana. He is presently a professor at Stanford University School of Medicine.
In 1986, people were just starting to feel their way through the dark when it came to understanding and treating AIDS.
Dr. Leff, who had been in public health for over 20 years (as an officer in Viet Nam, director of the Cincinnati Public Health Department and Cincinnati free clinics) decided to go into private practice for the first time in his life. This was no easy leap of faith and involved a different kind of personal responsibility than he was used to.
“I found a doctor on Seabright Avenue in the city of Santa Cruz, Dr. Blackwell, who at 80 years of age was still running a large geriatric practice. He was going to retire soon and let me use his office in the afternoons,” Arnie says. “Before I even left the health department, a man named Ray Martinez walked in my door and said, ‘I hear you’re going into private practice. I want to be your first patient.’ Ray had AIDS, and he became my first patient with HIV.”
After Dr. Blackwell retired, Dr. Leff took on many of his elderly patients and an ever-increasing number of people with AIDS. “I became the ‘AIDS doctor’ and was in the trenches for over eight years,” says Dr. Leff. “It was like a war. People got tested, discovered they were HIV Positive, and went through hell trying to stay alive and figure out what worked and what didn’t.”
In those days there was little information about AIDS, but Dr. Leff scoured the literature and spoke with everyone who knew anything about the disease. “I had to learn it all,” he says. “The first report I saw was in the New England Journal of Medicine about Kaposi’s sarcoma and pneumocystis pneumonia. These two diseases are very uncommon except in immune compromised people, and the Kaposi sarcoma was uncommon period. At first they thought it was a gay related immune disorder and called it GRID (Gay Related Immune Disorder). It took about five years for everybody to figure out how big the problem was and that it was not restricted to gay men, even though they were the primary people affected in the U.S. at that time. It wasn’t until about 1984 or ’85 that we had a blood test to identify it.
“So, I had a lot of public health background and obtained what knowledge of the disease I could, but had no clinical experience in treating it. In fact, I had little clinical knowledge at all. I was really jumping into boiling oil when I took this on. It was like I was a baby thrown to the wolves, but in this case the wolves took me in, protected me, and helped me learn what I needed to know to survive and help them survive, as long as possible. It was quite a shift from seeing 20 people a month [his last major clinical experience, when he saw police officers in Cincinnati] to 20 people a day.
“In the beginning of the epidemic, it was primarily oncologists who saw AIDS patients, because it manifested with Kaposi sarcoma, which is a cancer. Now, that is rarely seen. After a brief period, however, the oncologists passed on their AIDS patients because they didn’t know how to treat all the other underlying symptoms. There were also a few infectious disease docs in town treating the disease, but a number of gay men had problems with their attitudes and bedside manner. Because of these realities and concerns, I became the defacto ‘AIDS doc’ in town. I kept up on the literature and frequently spoke with Paul Volberding, who is now a professor of medicine at UC San Francisco, but at the time was the director of the AIDS clinic at San Francisco General.”
“We had all these young patients whose immune systems were shot, but were otherwise healthy,” Dr. Leff says. “The dying process for these patients was very difficult. We had hospice services at the time, but they were learning along with the rest of us about what worked and what didn’t. During those years, I believe I made more referrals to hospice than any doctor in the county, other than oncologists.
“The physical challenges were staggering. Histoplasmosis is a fungal disease that occurs in the Midwest. It is like a flu. Most people get it, don’t feel well for awhile, and then recover. Candida is a disseminating yeast that can effect healthy people, but is not life threatening. For people with AIDS, both Histoplasmosis and Candida were deadly. We also saw them picking up meningitis from a fungal disease, as well as lymphomas and central nervous system lesions (toxoplasmosis). To top it all off, many of those afflicted also developed dementias.
“I remember one patient who was admitted to the psychiatric unit at the hospital because he had HIV dementia. He couldn’t control himself or his bodily functions. He was a mess. We got him into a halfway house, but the mental health people refused to put him in their system. They said they couldn’t handle AIDS dementia because it was physical and not psychological. I told them the guy was clearly psychotic and had no place else to go. The nursing homes wouldn’t take him because he was psychotic, and the mental health folks wouldn’t take him because AIDS was his primary diagnosis. He wound up staying as an inpatient at Dominican Hospital for four and a half months. It was tragic; a young man living, most of the time able to ambulate, in the hospital for over four months, and dying there, too.
“That was some of the war-like quality the epidemic presented. I felt like I had to beat down some barriers, even if it took force. I spent eight years teaching every doctor in town, every specialist, nurse, x-ray tech, and health professional I could speak with, about AIDS. Some didn’t like it, some walked out, and some refused to treat them. It was frustrating and sad. I told them the truth that yes, they could possibly die from coming in contact with an infected needle, but that was already true in their profession; it was part of the risk they took every day already. I’ve had four or five needle sticks in my career. It was scary. I got myself tested again and again and again, to make sure.
“I was having enough trouble dealing with all the deaths and loss by itself, let alone having to continually confront a system that didn’t want to budge. I was having, on average, one patient a week dying from the disease. I probably had 50 or more deaths in one year. Some of those were geriatric patients as well, but it was enough to warrant a significant support system. When I first went into practice, there had only been one person who died of AIDS in the entire county.”
“People didn’t understand,” said Dr. Leff. “I was watching people die, and often there was nothing I could do about it. We had no treatment, no cure. It was the first major epidemic since Polio, which died out in the ‘60s, though in some areas it has now resurfaced. I saw myself as a soldier in the war against disease, and the reality was that there were casualties on both sides. The docs, the patients, the nurses, were all affected emotionally, if not physically. There continue to be casualties to this day.”