The ICC was an ugly futuristic building constructed of steel and glass. Security guards, anticipating outbursts from AIDS activists, were everywhere and made the place more forbidding. The wan light of fluorescent bulbs illuminated the halls and rooms, as in any modern convention center. Navigation would be tricky, I thought. The interior was multitiered with stairs and escalators radiating in every direction. Thousands of people would be attending, adding to the disorder. Already they milled around everywhere, carrying black shoulder bags emblazoned with the orange logo of the conference, Halloween colors in late spring.
The conference itself, which began the next morning, depressed me. It had no particular theme and at times seemed more like a carnival than a solemn gathering of sincere individuals united to combat a deadly disease. I struggled to drum up excitement as each sad day passed. In the opening lecture Dr. Michael Merson, the director of WHO’s Global Programme on AIDS, set a pessimistic tone by declaring that millions of people worldwide had been infected with HIV despite all the efforts of to control its spread. In all ways, he said, the pandemic was truly global in scope. Although we’d learned much about how to help people avoid behavior that put them at risk of sexual and blood-borne transmission of HIV, such measures alone were insufficient to slow the pace of new infections. Political leaders had vastly underfunded efforts to find effective treatments and curb risky behavior. Without greater commitment AIDS could not be controlled, he warned. In another lecture Dr. J. M. A. Lange from Holland offered a glimmer of hope that there were promising new drugs and drug combinations on the horizon. But the effects of monotherapy—that is, the use of a single agent like AZT to treat HIV—were modest and transient, Dr. I. V. D. Weller concluded. It’s not surprising that I found myself much more interested in global public health issues than basic or even clinical sciences.
Every day saw a breakfast meeting sponsored by Burroughs Wellcome, the pharmaceutical giant that marketed AZT. These were intended to bring more than one hundred clinicians and experts together to review the previous day’s presentations with the goal of producing a booklet for American physicians caring for people with HIV/AIDS. There was a time in the earliest years of the epidemic when I was honored to participate in these affairs and hobnob with the AIDS glitterati, the movers and shakers in the scientific community from San Francisco, Los Angeles, New York, and Chicago who’d been the first responders in the war against AIDS. Because of the number of AIDS patients in my practice, I was feted like an important person, first by infectious disease specialists in Chicago who needed patients for their scientific studies, then by companies that developed treatments for opportunistic infections, and now by companies that marketed treatments against the virus itself. Pharmaceutical reps courted and flattered me, invited me to dinners at expensive restaurants, and paid me a stipend for conducting community forums at which I would speak about AIDS to audiences of vulnerable gay men. I sat on so-called advisory boards with colleagues from around the country, expressing my opinion about the value of a particular medication or the direction research should take. I enjoyed the limelight yet felt a bit like one of the Beverly Hillbillies, fawned over because of their accidental wealth.
But by 1993 I was no longer enamored. A few of the glitterati had morphed into nothing more than Burroughs Wellcome whores, I thought, paid hefty sums for their time and effort. Unfortunately, Big Pharma influenced them too profoundly. A pioneering AIDS physician from one of the university hospitals in California headed my breakfast table. For a member of the glitterati he was a very pleasant man, down-to-earth, personable, and genuinely concerned about the welfare of his patients. Sometimes one had to make a pact with the devil to advance a scientific cause, I mused. The other physicians at my table, mostly infectious disease specialists, were also amiable. I was the only primary care physician, the lowest man on the totem pole, a foot soldier, not a high-ranking officer, in the war against AIDS. At times I was just a hot mess, full of contradictions and inconsistencies. One moment I hated being in the limelight because my ego wasn’t large enough to embrace and enjoy it. The next moment that same ego bristled at the thought that the glitterati and other infectious disease specialists didn’t take me seriously as an expert on equal footing with them.
The results of the Concorde Study dominated the conference. Essentially, the study demonstrated that AZT alone in patients who had no symptoms of HIV did not improve survival or impede progression to AIDS. Following the CD4 count (known less accurately but more commonly as the T cell count) was not a useful marker for success of therapy, though the count tended to rise in those who took the medication, hinting at a beneficial effect on the immune system. Dr. Maxime Seligmann, a respected French immunologist, presented a detailed analysis of the study, taking care not to extrapolate the findings to individuals with symptoms of HIV or to the possible effectiveness of drug combinations. But other data about combinations of anti-HIV agents were equally disappointing, he said.
What was I to tell my patients when I returned to my practice? What hope could I offer them? Did I continue to cling to AZT despite the Concorde study, and despite the fact that AZT was expensive and some insurance companies refused to cover it? When it was not covered, only the wealthiest people could afford AZT, though now it seemed that they’d squandered their money anyway.
We discussed little else at the breakfast sessions. By the end of the conference many of us felt frustrated, confused, and defeated. Despite the negative data, some of the glitterati stuck by AZT, insisting on its efficacy. How difficult it is to give up something you’ve spent years supporting! I thought. I should know something about that psychological phenomenon. How much time did I waste trying to salvage my relationship with Art despite the odds against its success? Too long! With the deepest sincerity, we had all wanted to believe that AZT could save our patients. AZT was released as an investigational drug in 1986; ddI and ddC, similar drugs, followed a few years later. The results of the Concorde study confirmed what most of my colleagues and I now believed: these three medications were ineffective in stopping the progression of AIDS. Yet I had to prescribe something for my patients.
There were interesting, if less sensational, presentations on the pathogenesis (the causal mechanism) and immunology of HIV infection by Dr. Anthony Fauci, from the National Institute of Allergy and Infectious Diseases at the National Institutes of Health, and Dr. Jay Levy, from the University of California at San Francisco. I couldn’t say that I understood them thoroughly, but I left impressed with the breadth of our collective knowledge and the progress in understanding the natural history of HIV/AIDS. Dr. Robert Gallo and Dr. Luc Montagnier, who’d carried on a dispiriting battle about priority in the discovery of HIV as the cause of AIDS, also made presentations. Dr. Gallo came across as a cowboy with his antics on stage—the loud voice, the exaggerated expressions, and a flair for the histrionic. Dr. Montagnier, a less flamboyant figure, was incomprehensible, and not because of his French accent or a poor command of English. I comprehended every word, not the content. Perhaps he described some sort of medical or scientific breakthrough, but I wouldn’t have known it.
The short lectures varied in quality. Some were downright terrible because of the disorganization of the presenter, obscure topic for discussion, or meager data. I searched in vain for gems among the stones. And the poster sessions were formidable, five thousand of them, I heard. I could review only a handful of them before I succumbed to sensory overload. “Plasma Fibronectin Levels and Prophylactic Use of Intravenous Gammaglobulin in Children with HIV-1 Infection”; “Use of Microculture Technique for HIV Isolation from Peripheral Blood Mononuclear Cells (PBMC) of Infected Person”—to name a couple at random. My brain overheated and I felt overwhelmed.
Because of my focus on Namibia, I concentrated on presentations from Africa. I was impressed by the sheer volume of small studies conducted there. How difficult it must have been for these individuals to get to Berlin, and how expensive it must have been for private and public
institutions to support them. Because of the size and scope of the conference, I wound up missing a presentation by Dr. Boadu from Namibia, who discussed the role of traditional healers in the transmission of HIV. I would have enjoyed speaking to him afterward.
The activists were ubiquitous. On the first day they rushed the main stage with a banner emblazoned with “Tear down the walls!” Adorning themselves with accoutrements of the marginalized—earrings, punk hairstyles, leather bands around their wrists and ankles—they chanted and shouted slogans until security officers dragged them away. I didn’t know who these people were or where they came from. They weren’t people I interacted with. I had a hard time taking them seriously at first; they seemed too farcical.
But the activists raised valid points. A flyer that members of ACT-UP, AIDS ACTION BALTIMORE, and TAG (Treatment Action Group) distributed targeted a pharmaceutical company, Hoffman LaRoche (HLR), that marketed one drug (ddC), had two others in the pipeline, and had developed a novel test (PCR) to measure the amount of HIV in an infected patient’s blood. Although HLR had brought ddC to market in record time after FDA approval, it had made no firm commitment for a larger trial to establish ddC’s effectiveness against HIV. Two years after conducting trials on another promising HIV medication, HLR still had released no data.
“Why the stall tactics?” the activists asked, accusing HLR of using US government funds to support its research while stockholders benefited from the enormous profit it derived from its potential medications and diagnostic tools, and then proclaimed, “THE WORLD WILL NOT PERMIT ROBBER BARON DRUG COMPANIES LIKE HLR TO MAKE HUGE PROFITS AT THE EXPENSE OF PEOPLE WITH HIV AND AIDS. HLR MUST STOP DEVELOPING ITS PROMISING AIDS COMPOUNDS ON-THE-CHEAP!”
Ironically, earlier rebels like Martin Delaney from Project Inform in San Francisco now seemed mainstream. A knowledgeable and articulate nonphysician, Delaney shared the podium with leading immunologists, infectious disease experts, and epidemiologists to discuss the value and limitations of community-based research. That conversation was directed toward groups like the one I belonged to, CPCRA (Community Programs for Clinical Research on AIDS), a consortium of HIV/AIDS practitioners throughout Chicago that I’d help set up. Was our organization, which included similar groups of clinicians from around the country, going to compete with academic and government research centers for scarce dollars or focus on testing unorthodox therapies in common use by HIV-infected gay men and community standards of care, as originally conceived? I agreed with him that we were losing our identity, but the management of AIDS was changing so rapidly that studies we designed became obsolete by the time an oversight committee approved them.
I thought the organizers of the conference were wise to have included the voices of the disenfranchised. But what more could be done to satisfy the protestors? I wondered. Although their level of frustration was understandable, their demands sometimes seemed unreasonable to me.
On the penultimate day of the conference, protestors heckled Dr. F., one of the glitterati from the University of Miami. An enraged HIV-infected physician asked her what he was to do, having wasted two years of his life on ddC and AZT. How could she be so positive about her data, which showed that AZT improved life expectancy as compared to a placebo? When he added, “Your data is invalid because it wasn’t analyzed by intent-to-treat” (that is, didn’t include people who’d dropped out of the study for one reason or another, which made the data appear better than they were), someone shouted, “Intent-to-cheat, intent-to-cheat!” Dr. F. responded in a tremulous voice, less from intimidation than from anger. “Why direct your anger at me?” she asked. “No one’s claiming that these drugs are panaceas!”
HLR wasn’t the protestors’ only villain. Astra Pharmaceuticals also came under fire for the astronomical cost of Foscavir, a new treatment for CMV retinitis. At one point a hostile crowd surrounded Astra’s booth in the conference hall like vengeful bees swarming around someone plundering honey from their hive, forcing the marketing team to flee. Deathly black stickers with a slogan I don’t recall were plastered onto the display’s tottering walls.
The meeting was such an odd mixture of people: citizens of the resource-rich and resource-poor countries; men and women; gays and straights; world-class scientists and humble clinicians; well-coiffed pharmaceutical representatives and ragamuffin activists. One world, one humanity, I thought. AIDS threaded through our social fabric, stitching together the disparate elements into an ungainly giant garment.
Doctors strive to give their patients hope; terminally ill people yearn for a cure; pharmaceutical companies lust for profits. This combination of cross-purposes has pushed medications onto the market too quickly, I thought. Look how much money we’ve spent on these drugs and yet how little benefit patients derive from them. In desperation patients would continue to search for alternative, unproven therapies in even greater numbers, I imagined. It was an interesting fact that European AIDS specialists hadn’t embraced AZT. We Americans had bought into the Big Pharma model with a vengeance.
In resource-poor countries, people were fatalistic. Every day thousands died of diseases that we in resource-rich countries could treat, like pneumonia or malaria. Thirty percent of the global population had been exposed to tuberculosis, 75 percent of them in the so-called Third World, or resource-poor countries. HIV-infected individuals died of treatable diseases long before they developed untreatable ones. The Concorde study meant nothing to Africans or Asians, who could barely afford aspirin. To them our debates about it must have seemed ludicrous or gratuitous.
As much as I railed against the sell-out glitterati, I was a bit of a sell-out too. One evening I attended a reception at the Museum of Natural History in East Berlin sponsored by Caremark, a corporation that supplied many of the intravenous solutions and medical equipment for treating my patients at home or in the outpatient setting. We sipped wine and munched on appetizers amid dinosaur skeletons and didn’t complain about the ungodly cost of such a frivolous event.
I left Berlin with no new information and little hope for those I cared for. My reflections shifted into a darker sphere. AIDS mirrored our times, I penned in my journal. AIDS seemed like one more marker in humanity’s road to destruction. As we reached our carrying capacity on Earth, we were starving ourselves, polluting our environment, threatening to destroy ourselves with nuclear weapons, and now there was a new plague. We couldn’t support ourselves on this planet with our current and projected numbers. By the time we fully comprehended these problems as a species, it would be too late. Humans were as destructive as any giant asteroid or massive volcanic eruption [in] the planet’s distant past. All species had a carrying capacity. They proliferated until the ecosystem could no longer sustain them, and then the imbalance corrected itself. As a species, we would probably vanish. Such was my mood that second week of June 1993.
But my experiences in Namibia and Berlin weren’t pointless, at least from a personal perspective. With encouragement from my advisor at UIC, I cobbled together my findings in a paper that I published two years later. “As Namibia formulates its national strategy for health care, struggling to guarantee health care and equal access for all, and seeks out funding from shriveling sources for the implementation of its AIDS guidelines,” I concluded, “the HIV virus continues its relentless spread into susceptible populations. These strategies will take years to evolve, a period of time the country can ill afford if it hopes to wrest some control over what is rapidly becoming one of the greatest worldwide public health crises of this century.”
It was my first and last scientific paper. For me, academia was becoming a dead end. By choice and by necessity, I continued instead down a road with no end in sight.
: 13 :
Turning Point (1996–2004)
Bruce refused to die. Once athletic and well toned—in his spare time he taught spin classes—by January 1996 he’d become skeletal, like most AIDS patients at the end of their lives. His eye sockets were hollow, his cheeks were sunke
n, and the skin of his face was drawn tightly like a membrane of a drum stretched over a hollow shell. His sticklike arms and legs protruded from a hospital gown that seemed far too large for his shrunken frame. His situation was beyond hope, yet he couldn’t let go; his parents wouldn’t let go. They begged me to do everything I could to save his life.
In the 1980s I saw Bruce intermittently for minor ailments. In May 1991 I declared him at the age of thirty-four to be “healthy,” although I didn’t know his HIV status because he turned down my requests to test him. Without effective treatment at the time, I didn’t press the issue. But between that visit and the next one, nearly two years later, he’d been diagnosed with AIDS after hospitalization in the suburbs for PCP. Just before his February 1, 1993, office visit, a test showed profound immune suppression. He could tolerate only half the recommended dose of AZT because he claimed it caused anxiety, but I urged him to increase the dose and added another anti-HIV medication and three others to prevent other opportunistic infections.
Plague Years Page 19