January 27, 2017
Prologue: War Games
What's past is prologue
William Shakespeare. The Tempest, Act 2, Scene 1
In terms of AIDS, what’s past is indeed prologue. Shakespeare said it first in The Tempest, only under different circumstances
Today, 35 years after the first case of AIDS was described, we talk about ending the HIV epidemic by 2020. To understand what it will take to bring new HIV cases below epidemic levels, we need to know how we got to this point.
This book is for the record. It is my effort to document the early era from the first case reports in 1981 through the advent of combination HIV drugs in the early 1990s. The so-called three-drug “cocktail,” officially known as highly active antiretroviral therapy or HAART, was transformative. The term HAART was an important part of the vernacular of the era.
Today, all of the HIV drugs in common use are potent or “highly active.” The approval of the HIV viral load test in 1996 helped us understand whether HIV drugs were working or not. That test helped to make HIV a chronic, more manageable disease.
In the early years, we never imagined we would reach a point where we could talk about ending the epidemic. It was a different era. So many words spun around in our heads while we tried to make sense of what they meant and how they fit together:
Body fluids, health crisis, incurable illness, the epidemic, pandemic, AIDS crisis, death sentence, AIDS hysteria, the virus, lymphadenopathy-associated virus (LAV), high-risk groups, safe sex, safer sex, injection drug use, hemophiliacs, Haitians, AIDS babies, children with AIDS, women with AIDS, transfusions, occupational exposure, antibody test, gay-related immune deficiency (GRID), AIDS-related complex (ARC), gay plague, AIDS victims, Pneumocystis pneumonia, inhaled pentamidine, dextran sulfate, AL-721, Compound Q, Kaposi’s sarcoma, Cryptosporidiosis, molluscum contagiosum, hairy leukoplakia, thrush, lymphadenopathy syndrome, AIDS wasting, and the ACT UP advocates’ signature: “Silence=Death.”
My Patients. Each one of them, in ways small and large, taught me something about the human condition. It has been a privilege to be their doctor.
My colleague and Community Health Network’s (CHN) head nurse, Carol Williams, said recently, “It was the best of times, it was the worst of times.” She was right; it was both.
We experienced the best of times when community people rose to the occasion to get involved in some way. The epidemic forced us to think in new ways, combined the art and the science of medicine in the best interest of patients, put condoms on the map, brought discussions of sex and sexuality front and center, linked the community together, and took gay rights, women’s rights, advocacy, access to healthcare, and empowerment to new levels.
By 1986, there were 10,000 cases of AIDS reported in the U.S. The fatality rate was 75 percent. That same year, Jackie Nudd, executive director of AIDS Rochester, and I went to Auburn State Prison to do an educational program for prison staff. Almost 200 cases had been reported in New York State prisons by that time. Condoms weren’t allowed, so we couldn’t talk about sex in prisons. We promoted HIV testing, but testing was complicated in the corrections system, and it would be another year before AZT would be available. They served us lunch for our efforts. It’s true what they say about prison food.
Also in 1986, 101 new cases of AIDS were reported in Rochester. The HIV antibody test had been approved a year earlier, and there were 200 people in care. As the number of patients in the clinic began to increase, I met with Dan Meyers and Jerry Algozer, two friends and community leaders. I asked for their help raising money for patients. “Of course,” was their answer, and they went to work, mobilizing their social networks. The result was “Helping People with AIDS” (HPA), a fundraising group that, over the next 17 years, would raise more than a million dollars for patient care. It would be another four years before any real federal funding for patient care was available through the Ryan White Care Act, so we were desperate. Also, this was before social media had a grip on us, and we relied on conventional media and word of mouth to promote our efforts.
The HPA concept was simple. People hosted dinners in their homes, and then the guests converged on one place for the after-party of dancing, drinking, entertainment, and dessert. We held the first event at the Village Gate and created a nightclub vibe with low lighting and black plastic trash bags covering the concrete columns. It was beautiful; only later did we realize that the fire marshall would have closed down our important event as a fire hazard.
We had no idea if this first AIDS fundraiser would work. We knew we had a hit on opening night when Dan Meyers and I peeked outside and saw a line of people down the block waiting to enter. Inside, I knew we were on track as I stood in a corner of the room, listening to the band, and watched the dancing skills of Richard Sarkis “dip” the black-sequined Diane Chevron.
Deemed a tremendous success, this first event raised $39,000. Later, HPA would be led by Craig Nenneau and hundreds of volunteers. HPA had no paid staff. Eventually, “Dining for Dollars” became a $100,000 annual event when it was held at downtown Rochester’s old Midtown Plaza. Over those 17 years, thousands of people participated and did something about AIDS. HPA helped pay for medication before federal funds were available, created a wish list for patients, and saved lives.
Jeff Kost, a community member had just launched his career in his family’s retail business. He described how volunteerism grew organically in the 1980s and became an essential response to the urgent needs of friends and families. He spoke of how the feeling of helplessness, in the face of the sickness and death of friends, inspired him to get involved with HPA and other AIDS activities. Later, he would leave the family business to become the first development director at AIDS Rochester.
Today, the HPA archives, thanks to Tim Tompkins, who led HPA in its last 5 years, and LGBTQ community historian Evelyn Bailey, are housed at the Smithsonian’s National Museum of American History. At the transfer ceremony in Rochester in 2012, the museum’s archivist described the collection as an example of the grassroots efforts growing out of the LGBTQ community in the 1980s in response to the AIDS crisis.
What was the worst of times during the early days of the epidemic? AIDS gutted a generation of people. Patients died. Lives and careers were interrupted. Families were in turmoil. A new kind of stigma emerged. Fear of contagion. Homophobia. At one point, it seemed as though all of my patients were 32-year-old men who were facing death.
The social climate of the era waxed between benevolence and cruelty. The death of a partner from AIDS called into question a whole series of relationship and grieving issues that had not been seen before on such a large scale.
The loneliness experienced by some patients was compelling. Survivors often didn’t do much better. I saw many episodes of family members wanting to rid themselves of the surviving partner. There were squabbles over wills, real estate, bank accounts and household goods.
Validation of gay relationships was on shaky ground in those days; hopefully, it well be less so today with marriage equality. One of my patients went into therapy after his partner of eight years died. He was overwhelmed by sadness. He thought that he could weather the emotional storm until the partner’s parents told him that he was not welcome at the funeral and that he would have to move from the house they shared for 10 years since it was owned by the deceased.
There was no will leaving the house to the survivor. “Not only have I lost my partner and best friend,” he told me during one visit, “but I lost my home.” The bickering back and forth over possessions also became a huge distraction from the surviving partner’s healing. He wasn’t allowed to grieve peacefully.
The contagion wars were no better. Fear of contagion drove people into a frenzy of irrational behavior and thinking. There were calls to quarantine people with AIDS and efforts to outlaw gay bathhouses, gay bars, and adult movie theaters and bookstores. Jackie Nudd, AIDS Rochester’s executive director, and others of us shot back and said those efforts would drive people underground and that education, outreach, and HIV testing were better alternatives. The discussions were endless, frustrating, and, at times, ugly.
For a time during the early years, I wore army fatigue pants, a black t-shirt, and combat boots around the house in the evening and on weekends. I remember telling Steve Scheibel that I needed to set the mood, even though it was totally out of character for me. We laughed about it, but deep down, we knew it wasn’t funny
Why the war games mentality? It helped cut the tension on several fronts. One was the culture war around AIDS. LGBTQ communities in conflict with conservatives kept us vigilant. We needed a response to those who promoted AIDS as a form of punishment. The medical war required us to think ahead, advocate for patients, and be aggressive. We never knew what decisions would need to be made when we went to the office each day. In fact, we learned to expect the unexpected, waiting for the other shoe to fall. We were slogging through a thick fog of matters none of us had ever encountered; quick decisions to be made, patients sick and in crisis, and death everywhere. These were very long days. The sense of urgency was constant and often overwhelming.
I had done media interviews in the past, but once AIDS hit, I found myself in front of the camera or a reporter, being photographed and quoted in the next day’s newspaper or being filmed for the evening news. Unlike my previous limited media experience, I learned quickly that anything related to AIDS in those days was politically charged.
I tried to watch what I said and how I said it, knowing that my media mentor, Bob Loeb, medical center public information director, and my mother were both watching and reading. Bob’s coaching on how to speak in sound bites saved me from falling into many a rabbit hole.
By the time Community Health Network, our HIV medical clinic, opened in 1989, almost 25,000 people in the U.S. had died of AIDS. CHN was poised to be on the forefront of the AIDS effort. Our early, aggressive “hit hard, hit early” mantra was gaining traction slowly. However, the final consensus for treating HIV patients as early as possible wouldn’t be settled until 2013.
Lisa Brozek, CHN’s clinic infusion nurse, said recently that the pace and devastation around her felt like a “war zone.” She was right. The pace was frenetic. Sid Metzger, CHN social worker, once said that she felt like a caged mouse, running on a wheel in the cage that never stopped.
Bishop Matthew Clark of the Roman Catholic Diocese set the tone for religious leaders in the effort. Recently, he quoted Pope Francis in reference to the era, saying that “the Church during a health crisis is like a field hospital during wartime.”
Still, there were lighter moments. On some chaotic days at Community Health Network, we would laugh at the irony and drama of it all. As Steve Scheibel said more than once, “I love this place when it sizzles!”
True to Shakespeare’s past as prologue quote, my growing-up years provided a dress rehearsal for what I would confront many years later when the AIDS crisis hit.
I was a serious kid. I never went through a stage where I wanted to be a cowboy. I always wanted to be a doctor. My inspiration for a career in medicine was my great-uncle, Dr. James Chiappetta, my mother’s uncle and an internist in the Public Market neighborhood of Rochester. Along with my parents and Dr. Jonas Salk, who developed the first polio vaccine, he was my hero.
When I was in high school, I had an assignment to interview someone whose occupation was the one I wanted when I “grew up.” The decision was easy. I interviewed Uncle Jim. We sat in his exam room after office hours one day, and I asked the questions. I remember only the last question: “What does it take to be a good doctor?” His response was eloquent: “A genuine love of humanity.” End of interview. I was on my way to a white coat and stethoscope.
Uncle Jim died in 2014 at the age of 107. Over the years, I have met many of his patients. They all say the same thing: “He was a fabulous doctor. He took care of our entire family. He made house calls. He didn’t charge us when we were broke.” My later mentor, Dr. Lawrence “Larry” Chessin, one of my early mentors as an intern, who knew Uncle Jim from the staff at Genesee Hospital, once told me that he was a “fine physician of the old school” and a “real gentleman.”
My parents had clear expectations that set the course for my life as well: Save your money, work hard, pay attention in school, and be nice to people. Since I grew up in the polio era, we also learned how to wash our hands vigorously before eating and after using the bathroom. It seems like I’ve spent a good part of my life dealing with matters of contagion. My parents’ hand-washing lessons would serve me well as the Strong Memorial hospital epidemiologist many years later.
The art of running a small business came from my wise father who ran a wholesale produce business at 16 Public Market in Rochester. We worked side by side for many years on weekends and summers. I was bored by the experience, thinking that I was cut out for greater things. He encouraged me in my career plan and told me more than once that I could do anything I wanted if I put my mind to it. At home, he tried to instill in me a love of classical music. As we filled plastic tubes of tomatoes on the packing machine conveyor, he would offer bits of advice. Many years later, I would put the pieces together and come to appreciate his strategic approach to business and life and his love of music.
We were fortunate to have a stay-at-home mother. An avid reader, letter writer, and news junkie, our mother was a constant presence during our growing-up years. My first “risk-benefit analysis” was as a second-grader when my mother, at the young age of 28, enrolled my sister Elizabeth and me in the Salk polio vaccine trial. She and Uncle Jim had caucused, and he reassured her that the benefits of the trial far outweighed the risks.
In research-nurse style, she explained that there was a chance we would get the “sugar injection,” her words for placebo. The vaccine trial started, and she went to work with her daily rosary to ensure that we received the real thing.
I recall my classmates lining up in the school library for the three injections. In the vaccine trial, 623,972 schoolchildren across the U.S. were injected with the vaccine or placebo, and more than a million others participated as “observed” control subjects. The largest field trial ever conducted, the results were announced in 1955. The trial showed that the vaccine was 80–90 percent effective in preventing paralytic poliomyelitis.
When I was seven years old, I went with my mother to Sibley’s department store in downtown Rochester during a March of Dimes campaign, the organization that funded Salk’s polio vaccine work. An iron lung, a monster of a steel tube, was on display. One type of polio (bulbar polio) paralyzed your breathing. The iron lung helped expand and contract your lungs to help you breathe. And that’s where some polio survivors were doomed to spend the rest of their lives.
What a cruel disease, I thought. In modern terms, living in an iron lung would be like spending your life in the confined space of a CT machine. I was alone in the room, and I tapped my knuckles on the cold metal cylinder. I can still hear its hollow, clanking sound.
At the end of the vaccine trial, wearing a big smile, my mother gave us the good news. Elizabeth and I both received real vaccine and not placebo. I can imagine the sigh of relief she felt when she read the morning paper, as she did every morning. Newspapers screamed in 6-inch headlines: “SALK’S VACCINE WORKS!”
Nice work, Mom. You saved us from the iron lung. We received lapel buttons that said “Polio Pioneers.” After the trial was completed, polio became yesterday’s news. Our two younger brothers, Jim and Richard, would never know a world with polio.
My new hero, Dr. Jonas Salk, left me with an indelible impression of the noble work of wiping out disease. Imagine your life’s work resulting in preventing polio, the scourge of the day. Just imagine being a part of the eradication of a terrible disease.
I do. I imagine a world without AIDS. Every day.