Chicago, Illinois and Madison, Wisconsin
I had just returned from a sabbatical leave at the National Institutes of Health in April 1981 to my position in Pathology, Medicine, and Microbiology at the State University of New York in Syracuse when each of two Infectious Disease specialists asked me to consult on one of his patients: 23-year-old Gordy Turner and 36-year-old Jeffrey Hartford. Both had unusual infections, at least unusual for those with intact immune systems and both had lost at least 20 percent of their body weight. Their blood work demonstrated decreased lymphocytes and then decreased T4, also known as C4, or helper lymphocytes. Neither profile fit any of the then known immune deficiency states.
These two men had been healthy until the last few months. There was no family history of similar problems. There was no evidence of any known systemic disease such as cancer. Both had lived robust lives. Now both were losing much weight for inexplicable reasons. They did not know each other. Gordy Turner was in his mid-twenties and was about to be married. Jeffrey Hartford was in his mid-thirties and was openly gay.
Our next patient was a prisoner in shackles from the New York State Penitentiary in Auburn, N.Y. He had injected drugs, sharing needles with other drug users. Even when he was in the dark and forbidding intensive care unit, with a white curtain surrounding his bed, gasping for oxygen, speechless, and immobile, Doug Dupuy remained in foot shackles. And that is how he died. His death released another set of connecting chains; linking his death to fear of infection and death, fear of the unknown, fear of a plague, creating a vise of near-panic around the already confined souls of the other inmates and prison guards from Auburn Penitentiary.
All three of these men died. Jeffrey passed away about twenty months after I first met him on December 31, 1982. At the time, he was the longest known survivor of AIDS. His physician called to let me know that Hartford had died but also to ask if we could do the post-mortem. And that is how Bruce Davis, Larry Miller, and I spent New Year’s Eve 1983—in a overly quiet, over-sized autopsy room at University Hospital. We wore goggles and were gowned up, masked up, and double-gloved. The room was lit mainly by an overhead single incandescent fixture and dark shadows played hide and seek with the bright light as we tried to find the reason that the person beneath our scalpels had died.
We finished at 6 AM.
The funeral was on January 3, 1983 at Whelan’s funeral home in downtown Syracuse. The day was a typical one for Syracuse in January, cold, overcast, and with the constant threat of lake-effect snow.
Jeffrey’s mother sat in the front row with his housemate, Joe Fortunato and other friends. Jeffrey’s four brothers, two sisters, and their many children quietly sat through the solemn, dignified service. The entire group then mingled, offering mutual support and comfort. I was surprised to witness the acceptance by the family of Jeffrey’s other family. Clearly their love for their son, their brother, and their dear uncle transcended the dictates of much of society and of the church. Thus began my introduction to an epidemic named a year or so later Acquired Immune Deficiency Disease with the misleading acronym of AIDS.
By the end of 1982, the CDC counted 1,519 persons diagnosed with AIDS; 620 of whom had died.
The epidemic intensified along with the media scrutiny and public fear. As we accumulated more patients, homosexual and bisexual men, intravenous drug users, and prisoners from around the state, two residents and I opened a clinic at State University Hospital. We treated each infection and tumor, each new ailment often with success; success that was always short-lived. Once diagnosed, almost all those afflicted died within 12-18 months. We soon recognized the need for other services.
Led by two remarkable men, we formed a community outreach group, partially financed by New York State, grants, and donations. We named the organization The AIDS Task Force of Central New York. The ATF brought food to those too ill to shop, found housing for those without, and served as ombudsmen between the client-patient and insurance companies, physicians, and any others.
This was a new disease. It was deadly and dramatic. My laboratory began to study the mechanisms and cause of this ailment. During my Sabbatical at the National Institutes of Health, I had been made aware and worked with components of a new pathogenic virus called HTLV, Human T Lymphoma or Leukemia Virus. This was the first retrovirus discovered to cause human disease, distinct types of T cell lymphoma and T- cell leukemia.
With my colleague, Dr. Bernie Poiesz, our laboratories used several different techniques to identify the etiological agent including electron microscopy. On April 3, 1983, I entered another world as the reticent pathologist Tony Planas brought me copies of the black and white high gloss electron microscopy photographs of a virus lying within the cells from an AIDS patient. . Tony thought it was cellular debris; Bernie disagreed. I looked long and hard at the shiny pictures; I gathered photographs of known retroviruses from reference sources and compared them to the structure within the cells from one of our patients with AIDS. I moved the glossies around to reduce the reflection from the overhead fluorescent light.
“Tony, there is something there. “ I believed that we were looking at the cause of AIDS but I knew that we were far from proving it. Bernie Poisez agreed with me that it was a T-cell trophic retrovirus. Tony’s photographs and our serological evidence pointed away from HTLV but towards another, hitherto, unknown retrovirus. The race to identify the cause of AIDS was on and we had at least tied on our sneakers.
As 1985 concluded, the CDC reported 22,049 persons with AIDS, 12,347 had perished.
By the end of 1982, it had been clear that the illness could also be passed on through the blood. Thus, recipients of blood or blood products were at risk. This included persons with hemophilia. The pediatric hematologists, Marie Stuart and Jim Stockman asked me to study and help care for their 40-50 hemophilia patients. We began to meet with these patients and their parents. Most of patients were children, under the age of fifteen.
The date: March 30, 1985. The place: the large conference room at State University Hospital, Syracuse, New York. It is early evening and the room is packed with more than 100 parents and patients. This was the group most directly and many would say most innocently affected by the AIDS epidemic, putting their trust in medical care for themselves and their children. Paradoxically the more treatment they received, the more likely they were to be infected. The medical community had inadvertently given these children a non-treatable deadly disease. These folks had dealt with multiple traumas in life; bleeding emergencies; hospitalizations; possible death by every fall or bump; guilt by parentage; what more must they endure. They must endure this, the possibility, the strong possibility, that their love will turn to death.
As I spoke, several parents began to cry and my voice cracked and faltered. I fought tears to try to complete my assignment. “We promise to do everything we can to help you and your children get through this.” And we did.
At the end of 1987, the CDC reported 68,433 persons with AIDS and 40,006 deaths.
In the middle of 1987, the Chair of Pathology, Burt Goldberg and the CEO of the University of Wisconsin Hospital and Clinics, Gordon Derzon, asked me to look at a position in Madison. I had looked at several other positions and rejected them for one reason or another. The job in Madison offered me something beyond the usual personal and professional resources and challenges: a Nobel Laureate, Howard Temin. Howard and I were both originally from Philadelphia and both had graduated from the same high school, Central High School (he a few years before me). He had won his Nobel for co-discovering retroviruses or more specifically, the ability of organisms to make DNA from RNA, the opposite direction of the most common process.
In the mid-90’s, Dr. Temin developed lung carcinoma of the type not associated with smoking. We began to meet at least once a week and spoke of many things. A well-known cancer physician, Paul Carbone, headed the team treating Howard Temin. In a twist of fate, I worked in Carbone’s laboratory when he was at the National Institutes of Health. Howard maintained his laboratory and served as advisor and consultant to several national and international AIDS groups up to the day he died, a professional and personal loss for many including me. With Howard’s help, we were able to obtain resources and establish a functioning AIDS research program at the University of Wisconsin.
More than 650,000 Americans have died of AIDS and another 1.22 million have been infected. Globally, more than 1.2 million die every year with thirty-seven million infected. The AIDS epidemic has continued unabated with one major exception. Due to the development of anti-viral drugs, the death rate has plummeted. Those infected with HIV, the virus causing AIDS, have lives more similar to other chronic diseases such as Diabetes rather than acute disasters such as Ebola. The AIDS epidemic has left long-lasting legal, social, and sexual impacts. Our responses have altered our society and guided our preparations for subsequent epidemics such as MERS, SARS, Ebola, and now Zika. The hope remains that never again will we allow fear and prejudice to prevent our society from performing the basic tasks of humanity.
Dr. Russell Tomar retired as Chair of Pathology at Stroger Hospital of Cook County and Professor of Pathology, Rush University in 2009. Prior to that he served as Professor of Pathology, Population Health, and Medicine at the University of Wisconsin and Professor of Pathology, Medicine, and Microbiology at the State University of New York, Syracuse. He received his Medical Degree from George Washington University, training at Washington University of St. Louis, the University of Pennsylvania, and the National Institutes of Health. He is credentialed in Clinical Pathology, Immunopathology, and Allergy and Immunology. This article is based on Don’t Stop Dreaming, a memoir about the early years of the AIDS epidemic. It was in Syracuse that he first encountered the disease that became known as “AIDS.”