Now that COVID-19 is slowly falling victim to “the vaccine,” it might be appropriate to reivsit the AIDS epidemic in the early 1980s.
When AIDS exploded onto the scene in 1981-82, times were so frightening I sometimes wished that I could fall asleep and then, like Rip Van Winkle, wake up when it was all over.
I first heard of AIDS on a street in Center City from Henri, an RN, who told me, “They just found out that [gay] sex causes the brain to rot.” The look in his eyes was one of sheer terror as he explained that he had read about the new disease in The New England Journal of Medicine. This was some weeks before the iconic New York Times article about a strange gay cancer.
Naturally I assumed that Henri was playing me for a fool.
My friend, Steve McPartland, was in his mid-twenties and on the verge of what probably would have been a successful ice skaing carrer when he broke his back on the ice. I met Steve while working at Chester County Hospital while living in West Chester, Pennsylvania. Not many years later, Steve became one of the first men in Philadelphia to contract AIDS. Reality hit home in a big way for me when I saw a picture of him in a hospital bed on the front page of the Philadelphia Gay News.
The year was 1983, well before there was a test to detect the virus or even a drug to ward off secondary infections of the immune system. It took Steve about two years to die. Although he eventually left the hospital, he became a common sight on the streets of Center City, hobbling along on his crutches, an AIDS buddy by his side. His slow demise was difficult to process. I last saw him on Spruce Street one summer still on crutches eating a vanilla ice cream cone.
After Steve McPartland’s death, the names of the sick and deceased in the gay press seemed to quadruple. We were now in the grip of a plague, first known as Gay Cancer, then GRID (Gay Related Immune Defiency), and finally AIDS.
Albert Camus’ novel The Plague had nothing on this thing. A disease caused by sex that “eats the brain” and that puts ugly marks on the body was now causing some people to suggest that AIDS patients be quaranteened.
There were moments when many thought that gay men would be forced into medical camps.
Fast forward to 2012, namely to a middle row seat on a U.S. Airways flight from Philadelphia to San Fransciso. I was thinking of Steve McPartland while reviewing a program booklet entitle The Evolution of HIV/AIDS Therapies, a short panel disccusion due to take place at the Gordon and Betty Moore Foundation in Palo Alto, California. The seminar focused on the progress achieved in HIV therapies, as well as the global challenges still to be met.
I went to cover the event as a journalist. The trip got me thinking of another friend who died of AIDS, Dr. William H. Miller, of Tacoma, Washington who was a Harvard med student when I met him one night in the Cambridge Common.
Bill Miller hailed from Ashville, North Carolina, birthplace of American novelist Thomas Wolfe, and attended Harvard Med with the aim of going into general practice. We were both 20 years old old.
In those days Bill Miller talked about what it was like to be a Harvard med student, like how his personal lab dissection shark fell from a shelf into his lunch, ruining a good Liverwrust sandwich. Sometime later, Miller left for Washington state to do his residency program. I never saw him again although we kept in touch through letters and postcards. He’d send me pictures of his exotic travels to Vienna, Paris, or Central America. After that we lost touch, not an unusual situation when friends take divergent life paths.
But years later, in a Hitchockian twist, I met an elderly Seattle physican through a friend of a friend and on a whim, asked this physician if he had ever heard of the North Carolina-born doctor. The Seattle physician told me that he’d been a friend of Dr. Miller’s for many years, and had even gone to a party or two at Bill’s Washington state forest cabin. Then he told me that Miller had died of AIDS some nine years before.
I knew there would be more memories once I was front and center at the Moore Foundation to hear Gregg H. Alton and Norbert W. Bischofberger, both from Gilead Sciences, and Sir Richard G.A. Feachem and Paul A. Volberding, from the University of California..
At the conference, Volberding jolted the audience with recollections about walking around San Francisco General Hospital in the early days and seeing the first person with Kaposi Sarcoma (KS).
“It was literally the start of the epidemic,” he said. “It took a while before we realized it was an infectious disease, but once we did there was terror because we didn’t know how it was transmitted. So there was a sense of personal risk in dealing with the patients.”
It was a common pratice for men with AIDS to cover their KS spots with Clearasil tubes or Cover Girl maleup sticks but often the blemish scabs were so pronounced, it was impossible to cover them.
In the gamey world of pornographic films of the period, the reality of AIDS hit hard: Popular actor Eric Stryker, for instance, failed to hide the KS spots on his body despite a heavy application of makeup. Watching these old films, the effect is haunting and creepy. Viral infections like pneumonia, herpes and KS were secondary infections and they could only be treated with drugs that addresed these secondary symptons, but treating the immune system as a whole went unattended, meaning that the infections came back until they killed the patient.
KS was particularly devastating in that it was external, a blatant Scarlet Letter that told the world that you had the plague. Prior to AIDS, KS was mostly a skin condition seen in the very old Eastern European or Mediteraran men. First described in 1872 by a Hungarian dermatologist named Moritz Kaposi, non-AIDS related KS was seen as being caused or affected by infrequent bathing, or as a condition that hit people with a history of asthma and allergies. To date, AIDS-related KS is rarely seen in children and is most prominent in Africa and other underdeveloped countries.
In the early days of the epidemic, health paranoia affected familes and destroyed relationships. In Philadelphia and elsewhere, many heterosexual couples stopped inviting their gay friends to dinner, while some stopped seeing them altogether. Relatives stopped kissing their gay sons or siblings on the mouth; some even had worried looks on their faces when they kissed them on the cheeks, as if the virus hibernated in pores or blew out of the nostrils in the nose.
City dentists began to be wary of their gay patients and imagined weight loss when there was none. “You look awfully thin,” my Center City dentist at the time said to me. “Are you sure you are alright? Are you sure? Really?” This Q and A went on for several years. Many times, I felt he wanted me to say, “No, I am not alright,” so that he could tell me to go find another dentist. Because relatives and straight friends were always imagining weight loss when there was none, even these simple questions led to nights of unnecessary worry and panic because of the ‘What If’ factor.
Discrimination and fear even resched into the corridors of hospitals, especially Ward 54 in San Francisco General, the so called AIDS wing, where so many young men died. Volberding recalled:
“We heard horrible stories of patients who had to get up and change
their own beds during the night, the night sweats, and would
have to go beg for Tylenol from the nursing station.
“People went blind,” Volberding continued, “and were unable to care for themselves, while caught in the middle was the social issue and the fact that they were gay and families would often descend on the deathbed and try to take over the care from the lover.”
Steve McPartland died before the discovery of AZT in 1987, even if AZT was no panacea but a drug with a host of unwanted toxic side effects. “AZT was a troubled introduction,” Volberding said, “it had to be given 4 hours around the clock.”
AZT, in fact, was developed by Burroughs Wellcome, a British Pharmaceutical firm, from on old compund they had sitting around on their shelves. AZT was developed in 1964 from herring-sperm extract as a possible cancer treatment but was quickly discounted as too toxic. But it was given new life when it was packaged as a drug that would help delay the onset of AIDS in healthy people infected with the virus. When this happened, the Burroughs Wellcome stock surged to the heavens, in effect capturing the entire scientific community so that there were no scientists left to explore the possibility of other drug treatments. AZT at that time was the most expensive prescription drug manufactured, and the campaign supporting its useage was the biggest government medical research project in history. The drug itself was referred to by one AIDS activist, comedian Michael Callen, as “Drano in pill form.” Patients who took AZT had to have weekly blood transfusions and suffered from nausea and insominia while their bodies wasted away to skin and bones.
When British scientists discovered that AZT could only provide 6 months of benefits before the treatment backfired and started killing the patient, the information was not only ignored by the American press but AZT continued to be encouraged by a government appointed physician, Margaret Fischl, who urged the 650,000 Americans infected with HIV to continue taking the drug despite yet another finding: a National Cancer Institute report that stated that at least one half of the people who had taken AZT for 3 years could expect to develop an aggressive form of lymphoma, a deadly cancer. According to an article in The Miami Herald in 1990, AIDS activists were onto the Burroughs-Wellcome stranglehold on the development of new AIDS drugs early in the game, and began calling Fischl a murderer. For years Fischl’s hospital answering machine was flooded with messages from familes of the deceased accusing her of killing their sons.
Panel member Paul Volberding worked with Dr. Fischl at this time, and spoke out in defense of AZT then on a number of occasions. This fact was not mentioned or alluded to at the conference, although Volberding defended his early support of AZT.
“I remember how the world changed when AZT arrived,” he said in the 1990s. “It was a potentially toxic drug, but it brought the first real light of hope back into people’s eyes. It had demonstrable activity against HIV, and, most important, some AIDS patients who took AZT actually got better.”
Many died, however, causing one playwright activist, Larry Kramer, who died in May 2020 to write the following 1988 open letter to Dr. Anthony Fauci, an early proponent of AZT:
“…Anthony Fauci, you are a murderer and should not be the guest of honor at any event that reflects on the past decade of the AIDS crisis. Your refusal to hear the screams of AIDS activists early in the crisis resulted in the deaths
of thousands of Queers….”
1996 saw the first large trials of triple therapy, namely Protease Inhibitors being combined with various side drugs, that turned the disease around. These were the infamous cocktail drugs, sometimes amounting to thirty pills a day.
For many, like Steve McPartland and novelist Paul Monette (whom I interviewed by phone as he lay dying of AIDS in his home in Los Angeles), this development came too late.
But thanks largely to ACT UP, the pharmaceutical world was forced out of its apathetic slumber. Steve McPartland and Paul Monette would be shocked, were they able to come back to life today, on hearing Volberding say how manageable the disease has become: “With my patients now who are motivated and take the drug, it is as easy to treat as hypertension.”