The AIDS EPIDEMIC, A talk delivered at the Franklin Inn Club, 2015

When AIDS became a full blown epidemic 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 over. Since that could never be, I had to deal with the fact that a mysterious virus was killing gay men, and that my own life was at risk. The fact that there were still more questions than answers regarding the virus meant that gay men had to question every form of intimacy, be it saliva exchange during a simple kiss to more complicated forms of personal interaction. I first heard of AIDS on a street in Center City from Henry, an RN who sometimes crusied city streets dressed as a drag queen or a Catholic nun. Henry, his eyes as big as saucers, said, “They just found out that gay sex causes the brain to rot.” The look in his eyes was one of sheer terror but I did not believe him. At the time we were looking into a shop window at 13th and Walnut Streets after celebrating a boy’s night out that ended with a sumptuous omlette at one of the local greasy spoons. I assumed the pronouncement was just another one of Henry’s sick jokes. Henry told me he 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. Those early days for most gay men were quite confusing. Many of us were still basking in the libertine shadow of the 1970s. It was a naughty and undisciplined time when the worst that could happen to a fellow was a case of the clap or syphillis, but even these misfortunes were easily fixed with a shot of penicillian—and a band-aid, of course, in case the test needle brusied the skin. The baths in those days had health clinic nights when medical personnel offered free blood tests for STD’s. It was standard procedure for customers to fly in and out of clinic nights, then don a towel and join in on the Satyricon fantasy. Some years before, in the city of Boston—where I came out at age 18—I found the alchemists cure for years of teenage sexual repression: the gay bar, then an institution often raided by the police but at the same time frequented, in Boston at least, by the likes of Neueue, Robert Mitchim and even a very drunk Judy Garland. In Boston I’d take occasional Greyhound bus trips to Manhattan to the ritzy Continental baths where a brassy woman entertainer—a young unknown by the name of Bette Midler—inrterrupted the action with a lounge act that would soon go viral. I remember Bette Midler as a blob-like figure with a micrcophone as Barry Manilow played the piano. Meanwhile, back in Boston in the Brahim townhouses of the well connected, there was the occasional public orgy, an after hours event that would be advertsied by loud calls just before the bars closed at 2 AM: “Orgy at 72 Pickney Street, Beacon Hill!” You can’t make this stuff up, as they say. These were not BYOB events but, as they say, living life to the fullest, tapping into what poet Arthur Rimbaud called the “derangement of the senses,” even if the one orgy I attended was only as an observer—today I would compare that observer status to being an interfaith guest at the Second Vatican Council. At this particular party, I was sitting off to the side on a sofa beside a young Alan Helms, then a twenty-six year old ex New York actor turned Boston University English progessor, who would go on to write a well known scandulous memoir of the period, Young Man from the Provinces, a book praised by Gore Vidal, Terrence McNally and Edmund White. On page 149 Helms relates how he met me at this orgy, referring to yours truly as a sweet young painter with a terrible, terrible case of acne. Ouch! As it happened, I left the orgy not at all impressed by the pile of twisted, discombobulated bodies, in which nobody apparently left satisfied or happy. When it was confirmed that the new disease was caused by sex, I cut and slashed abuses in my romantic life with the vehemence of a Milton Freedman or an Alan Greenspan offering cuts to federal programs. The discipline did me good; the problem, however, were reports that said the disease had a long latency period, meaning that what I did five years ago could conceivably come back to haunt. Marks of the new disease could appear overnight: while stepping out of the shower or putting on a pair of socks one might notice a pimple or a bruise with the medical name, Kapsi sacaramoa. These were dreadful, scary times.

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 when I lived in West Chester, PA. Steve had just discovered that he was gay and wanted someone to talk to, so I introduced him to my partner and we three became friends. 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. Even then I had to wonder as I stood talking to him, “If I lean over and take a lick, will I become infected myself?” Almost immediately after Steve’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 also puts ugly marks on your body was now causing some people to suggest that AIDS patients be quaranteened. What would this mean, I wondered: would all gay men be forced into medical camps? Fast forward thirty years or so when I found myself in a middle row seat on a U.S. Airways flight from Philadelphia to San Fransciso. I’m thinking of Steve 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’m traveling with two representatives of the event’s co-sponsor, what was then known as the Philadelphia’s Chemical Heritage Foundation, an independent nonprofit dedicated to chemistry and to helping science find ways to help meet contemporary social challenges. I don’t know whether my two CHF colleagues on board had friends who died of HIV-AIDS. I didn’t ask them, my head being too full of the faces of other buddies who died of the disease, like Dr. William H. Miller who was a Harvard med student when I met him in Harvard Square’s Cambridge Common.

Bill Miller was from Ashville, North Carolina, birthplace of American novelist Thomas Wolfe. and attending Harvard Med with the aim of going into general practice. We met years before AIDS came on the scene when we were both twenty years old. Boys, basically. Later, Bill would fill me in on the life of a Harvard med student and tell me stories like how his personal lab dissection shark fell from a shelf into his lunch, ruining a good Liverwrust sandwich. He also told me how he was planning to move in with a heterosexual couple in Boston’s Roxbury section. A little later, he left for Tacoma, Washington, to do his residency program. I never saw him again although for years Bill and I 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 paths. But years later, in a Hitchockian twist, I met an edlerly Seattle physican through a friend of a friend and on a whim, asked him if he had ever heard of a North Carolina-born physiciam named Dr. Miller in the Tacoma area. The Seattle physician told me that he’d been a friend of Bill’s for years and had even gone to parties in Bill’s Washington state forest cabin, but that, tragically, Bill had died of AIDS some nine years before. Gay but in the closet, the Seattle MD was a sort of society physican, tall with white hair, very patrician-like whose company women found especially compelling. He told me more about Bill than I needed to know after which he went on to explain a few things about himself, one of them being the time he gave a physical examination to Robert F. Kennedy—father of RFK Jr.-- when the latter campaigned for president. Kennedy took sick in Seattle and needed a doctor. “Robert Kennedy was the nastiest patient I’ve ever examined,” my physician friend told me. “A nasty man, however when he took off his shirt I noticed that he had pure white chest hair while not a single strand of the hair on his head was white. That’s when I knew that he would not live long” Although there’s zero medical logic to such an equation, the Seattle doc insisted that every patient he’d examined who had white chest hair but normal head hair had died shortly after he gave them a physicial examination. Kennedy, in fact, was killed in Los Angele’s Ambassasor Hotel three weeks later. I thought that I had processed the deaths of Bill and Steve long ago, but here I was at 3 0,000 feet going through an emotional rolodex of sorts, as if the word ‘evolution’ in the program title had somehow got me thinking about the past. Whatever it was, 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. “It was literally the start of the epidemic,” he says. “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 grainy, gamey world of pornopgraphic films of the period, the reality of AIDS hit hard: Popular Adonis actor Eric Stryker, for instance, failed to hide the KS spots on his body despite a heavy application of makeup. 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 particularily 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 straight people no longer invited their gay friends to dinner, and some stopped seeing them altogether. Relatives stopped kissing their gay sons or siblings on the mouth, and 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 dentist said to me several times, “Are you sure you are alright? Are you sure? Really? Are you sure?” This Q and A went on for several years. Many times I felt he wanted me to say, “No, I am not alright, I am dying right before your eyes,” 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. Then there was the mosquito factor. One summer, the woman instructor of my evening aerobics class, agonzied for weeks over whether mosquitos can transfer the tainted blood of AIDS patients into the bloodstreams of healthy people as they fly from person to person. Not an unreasonable fear, I suppose, but her fear was so profound that she stopped going out dancing with me in the gay discos, where there were no mosquitos but where dance floor perspiration might be a cause for concern. Discrimination and fear even reached into the corridors of hospitals, especially Ward 54 in San Francisco General, the so called AIDS wing, where so many young men died. Volberding recalls: “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. Not to say that that was common, but it happened often enough that we found ourselves doing a lot of work putting out those fliers. It just became clearer and clearer that this was a very complex disease, and we were going to see more of it.” “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.” How many times did I hear of familes preventing the partners of dying sons from visiting them in the hospital? The stories were endless, of men who had spent years together suddenly told that their relationships didn’t matter.

In an oral history interview that was not presented as part of the conference, Volberding recalls the general paranoia among physicans. “There was about a year and a half period where the anxiety was so great that AIDS was just not permitted as a discussion item at home. There was so much anxiety attached to it that if I'd say, "Gee, I'm worried about taking care of these patients. I'm worried I have a fever, maybe this is PCP," my wife, Molly, wouldn't let me talk about it. I got calls from other people. A physician friend (Jerry Groopman) when he was still at UCLA called me once and said, "I've got it." He had developed a hepatitis and a fever, and was absolutely convinced (incorrectly, of course) that he had caught AIDS. So I really do think that that period at the end of '82, and then all of '83, into '84 until we had the [HIV antibody] test available, was a high stress period for us, with a lot of anxiety.” In the 1980s I had a biweekly column in Philadelphia’s Welcomat, where I wrote about gay issuess, both personal and political, for a straight audience. When fellow Welcomat writer, Patrick Hazzard, wrote a piece suggesting that gay men brought the disease on themselves, ACT UP raided the offices of then editor Dan Rottenberg and demanded an editorial retraction or that Hazzard be fired. When none of those things happened—the philosophy of the Welcomat was to publish a variety of opinions on different issues---ACT UP called for a boycott of the newspaper and suggested that all gay Welcomat writers resign in protest. One food writer did resign but I did not. Because I did not resign, minor trouble followed, such as getting shoved by activists in the street, though little else—besides not getting invited to parties-- happened to me. Years later, Philadelphia ACT UP leader Scott Tucker personally apologized to me for his treatment of me at this time.

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 adds, “it had to be given 4 hours around the clock.” He tells the assembly about a San Francisco community health seminar he attended at the time, and how the room erupted in beeps when 4, 8 and 12 o’clock rolled around because people had to take the drug in 4 hour intervals. “There were some benfits to AZT, but not many,” he adds. That’s an understatement. 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 from 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 lumphoma, a deadly cancer. According to an article in The Miami Herald in 1990, AIDS acitivts 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 waas 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 continues to defend 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. You could literally watch skeletal bodies flesh out to three-dimensional forms. In conjunction with therapies that helped prevent other infections, for the first time, patients began to live a little longer than the nine-to-11-month life span to which they had been destined before.” 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, While AZT killed the virus quickly, it caused the viral strains it didn’t kill to multiply fast, thereby giving them immunity. The cocktails went after these strains and made sure they did not multiply, increasing a patient’s chances of getting down to a viral load of zero, or the eradication of killer strains. For many, like Steve McPartland and novelist Paul Monette (whom I once interviewed by phone as he lay dying of AIDS in his home in Los Angeles screaming through the receiver about the heartlesness of then President Ronald Reagan and the pharmaceutical industry in working to find a cure), this development came too late. ( Monette, incidentally, won the National Book Award for nonfiction in 1992 for his autobiography, “Becoming a Man: Half a Life Story.” The writing of this memoir, Monette claimed, “literally kept me alive after my AIDS diagnosis. Although he thought that “Becoming a Man” would be his last book, he went on to write “Last Watch of the Night,” before his death at age 49, while hooked up to three intravenous tubes. Monette, in fact, described his repressive middle class childhood in Massuchesstes this way: “Never lost my temper, never raised my voice. A bland insipid smile glazed my face instead, twin to the sexless vanilla of my body.” But thanks largely to ACT UP—which did some fine work aside from its misguided raid of the Welcomat--the pharmaceutical world was forced out its apathetic slumber. Steve McPartland and Monette would be shocked, were they able to come back to life today, on hearing Volberding say how managebale the disease has become: “With my patients now who are motivated and take the drug, it is as easy to treat as hypertension.” . THOM NICKELS ”