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The Left Atrium
Contents
• Road to nowhere [PDF] • Vox audita perit [PDF] • The reluctant patient [PDF] • Soul searching [PDF] Road to nowhere
Shots in the dark: the wayward search for an AIDS vaccine 
A colleague, dismayed at the chaos in AIDS research and treatment, once remarked that the virus has no ego — and it is winning the war. In his view, part of the problem was that no one with sufficient moral and scientific authority had emerged to lead the international battle against HIV.
In Shots in the Dark Jon Cohen, a noted journalist with Science magazine, meticulously chronicles the disappointing and depressing history of AIDS vaccine development. Although he acknowledges the complexity of HIV itself and the biological impediments to developing an AIDS vaccine, Cohen attributes the failure to develop an effective vaccine to human characteristics: pride, self-righteousness and avarice. Cohen's book is the culmination of a 10-year investigation into "how the AIDS vaccine field suffered from disorganization, fractiousness, sleazy politics, sloppy science, a shaky marketplace, greed, unbridled ambition and leaders with shockingly limited powers." Not even the revered Jonas Salk, who entered the AIDS vaccine quest in 1986, nor Jonathan Mann, the human rights crusader and former head of the World Health Organization's Global Programme on AIDS, could successfully bring their stature to bear on AIDS vaccine research, "a road that was not heading anywhere in particular." In the second of 15 chapters, Cohen outlines eight requirements for the "road to success," including the identification of an AIDS vaccine hero in the mould of polio's Jonas Salk. In the rest of the book he recounts in a blow-by-blow fashion the failure of government, scientific leaders, industry and activists to meet the standards necessary for AIDS vaccine development. At the heart of what Cohen terms a "standstill" in AIDS vaccine research is an ongoing struggle between the reductionists, whose focus is on basic science and on determining the mechanisms of HIV disease (the practical implications of their research being secondary) and the empiricists, who hold that testing promising vaccines in animals and humans is justifiable even without a full understanding of how they work. Reductionists generally support the use of limited financial resources to answer basic science questions, which they believe will ultimately accelerate the search for a successful vaccine. Empiricists argue that AIDS has been so devastating, particularly in developing nations, that vaccine testing cannot wait for bench scientists to complete their work. Cohen cites the development of the Salk vaccine and even Edward Jenner's cowpox experiment as examples of the benefits of empiricism. The tension, and sometimes outright hostility, between reductionists and empiricists has paralysed decision-making and contributed to a lack of collaboration and the failure to establish a single authoritative leadership. (Cohen describes an international vaccine meeting in 1998 at which delegates refused to vote on the central scientific issue of the meeting and then "refused to vote on whether they should vote on it.") But, according to Cohen, the reductionist–empiricist conflict is only one of many that have slowed vaccine research to a crawl. Since the beginning of the epidemic, virologists have clashed with immunologists over treatment approaches, the former tackling HIV itself and the latter being more concerned with immune system responses. Early vaccine researchers focused almost exclusively on HIV-neutralizing antibodies while disregarding the crucial role of cell-mediated immunity. (Cohen argues that questions over the role of each will not matter if a successful vaccine is developed.) Battles have raged in United States government offices and in granting agencies over which type of research is deserving of funding: targeted and directed applied research, or investigator initiated and driven basic science research. Cohen does not let AIDS activists ("as anachronistic as hippies") off the hook. He chides activists for their tardiness in bringing advocacy to the AIDS vaccine domain. The epidemic-old competition for resources between treatment and prevention found its way into the vaccine field: more money spent on vaccine development would mean less money for antiretroviral treatment development. Further, a successful vaccine might effectively end the search for a cure, leaving those who are already infected stranded with only the therapies that are currently available. Cohen also has little patience for the pharmaceutical industry, which, motivated by profit and wary of liability risks, shrank away from vaccine development. In 1994 Salk, who was disengaging himself from AIDS vaccine research, declared that the industry had "come up with the value of a human." Cohen's solution is to establish a single $1 billion research organization called the March of Dollars (akin to polio's March of Dimes) to support clinical trials and pursue "alluring leads" neglected by researchers. He proposes that the March of Dollars be led by a person of the same stature and with political connections equivalent to those of the March of Dime's Basil O'Connor, President F.D. Roosevelt's former law partner. Supported with 49 pages of notes, Cohen's account is credible and exhaustive. His grasp of HIV pathophysiology and immunology is greater than that of most physicians. And he has an intimate knowledge and understanding of the systemic and scientific obstacles that have hindered the development of an AIDS vaccine. This treatise will serve as a new and definitive baseline against which to measure progress toward the development of a safe and effective vaccine. It will also serve as a document of accountability for all involved in the vaccine effort. Failure is not acceptable. Fred Sebastian National Archives of Canada / PA-120960
Philip P. Berger Contents
• Road to nowhere [PDF] • Vox audita perit [PDF] • The reluctant patient [PDF] • Soul searching [PDF]
Contents
• Road to nowhere [PDF] • Vox audita perit [PDF] • The reluctant patient [PDF] • Soul searching [PDF] Room for a view The reluctant patient
The change in expression was reassuring: her face was animated and bright and no longer lined with torment. The medication had obviously kicked in, likely the first time she had been pain-free in weeks, maybe months. Now in her middle 70s, she exuded warmth. She smiled, and the skin around her eyes crinkled. And with that smile, despite the hospital gown and the sterile surroundings, the years peeled away. I caught a glimpse of a youthful, vibrant woman. She had, I imagined, turned a few heads in her day.
"Thank you," she said, cupping my hand in hers and squeezing. The IV was visible on the dorsum of her right forearm. She moved this hand gingerly, respecting the line that had allowed her nurse to deliver such comfort. "To you and the nurses. For all that you've done."
Then her energy withered, her face darkened and her hands fell back to the stretcher. Before me again lay an ill, elderly soul.
She was thanking us, I understood, for relieving her pain and for admitting her to hospital. She had reached a point where she could no longer walk or limp or even crawl in her own home. But, having arrived at a tentative diagnosis, I couldn't help feeling uneasy, as if I personally had uncaged the beast that she had struggled to contain.
I had felt a certain foreboding from my first glance at her chart: "six months of hip pain." Problems of such duration irritated the emergency physician in me. I have lost, over the years, any desire or capacity to address chronic conditions. Surprisingly, though, this patient had not had any medical attention in the preceding half year. I felt liberated from the usual overlay of unsuccessful therapeutic interventions, as if hers were an acute condition.
As the history and physical examination unfolded, I felt a tension rising within myself. Cancer, it seemed, was the diagnosis of exclusion. She had lost her appetite and, along with it, many pounds. The pain bore into her at night, making sleep difficult. The muscles of her left hip and knee were contracted, guarding the joints in flexion. Any pressure applied to the leg, any attempt to move the limb, elicited shrieks of pain. Three hard subcutaneous nodules, one nearly the size of a golf ball, were palpable on her trunk.
"Why haven't you seen your doctor before this?" I asked, trying to keep the alarm out of my face. How could she have endured such misery?
"I called my family doctor but he had retired — suddenly, it seemed to me. No one was found to replace him. Every doctor's office I called was full; no one was taking new patients."
I nodded; hers was not an unfamiliar story. "I'm sorry that happened. You're having so much pain, though — why didn't you come here sooner? Maybe we could have helped."
So it is with certain hardy souls, I thought, who are self-reliant and independent. Too, people of her generation often possess a deep confidence in their own physicians. But hardiness and loyalty alone could not explain her reluctance to come to hospital. There must have been an element of denial, surely. Though I didn't ask, I also wondered if all the media coverage of ER crowding had discouraged her from seeking help.
As it turned out, a plain x-ray demonstrated patchy irregularities in the left side of the pelvis, indicative of metastatic cancer. And while cancer of the breast was a possibility, the physical examination did not support this diagnosis. The chest x-ray revealed the lung as the likely source of the primary malignancy.
"Mrs. Johnston, the x-rays don't look so good," I said, looking into her eyes, hoping to find trust reflected back.
"Oh?" she said, turning away from my gaze, pain visible on her brow.
"I'm afraid not. There is something in the bones around your hip that shouldn't be there, which is causing all this discomfort." I waited, watching her face, and wondered if the thought of cancer had occurred to her, if perhaps the fear of it had prevented her from seeking help sooner. She seemed to understand that I had avoided labeling her condition, yet she did not ask me to elaborate. I realized that she wasn't ready for me to confirm her apprehension; I held my tongue.
"I'm going to admit you to hospital. Looks like we haven't controlled that pain yet, so we'll give you some more medication in the intravenous. You'll receive a regular dose of strong painkillers to keep you comfortable. I'll speak to our doctor-of-the-day. She's very nice and a good family doctor. You'll like her."
"Oh, I hope so."
As the day proceeded, Mrs. Johnston rested on her stretcher. I checked on her later to find that she was numb with morphine. Eventually, this elderly woman with death on the tip of her tongue, her life in flashes before her eyes, was pushed to the back of my consciousness. The team, the nurses and I, carried on with the work at hand. She was still in the department long after I left for the day.
A few weeks later, I ran into the physician who had been assigned to her care. "How is Mrs. Johnston?"
"Well, she seemed to go along okay, initially. I excised one of those subcutaneous nodules, which confirmed a primary lung carcinoma, a large-cell."
She had been switched to oral morphine and anti-inflammatories. Arrangements for a consultation at the cancer clinic were made to see if palliative radiation was an option. She never made it. One morning, practically the day after the diagnosis was confirmed, she woke up and announced she was no longer interested in eating. She died within a few days.
But she was comfortable, apparently, right to the end.
Art Explosion
Brian Deady Contents
• Road to nowhere [PDF] • Vox audita perit [PDF] • The reluctant patient [PDF] • Soul searching [PDF] Lifeworks Soul searching
There's an inevitable intimacy that develops when one looks at the photographs of Andrea Modica. Perhaps it's the luminescent quality and small scale of her prints that force the viewer to bond with her images. Or perhaps it's the doting attention she gives to her subjects that enables us to lose ourselves in their stories. Either way, whatever the subject, her images always engage us in narratives that allow us to share in a wider vision. This blanket of intimacy extends into Modica's recent work, Human Being, which premiered at the Edwynn Houk Gallery in New York City from May 10 to June 30 this year.
Working alongside scientists, Modica spent over a year photographing skulls unearthed on the grounds of the Colorado Mental Health Institute in Pueblo, Colorado. In 1993 prison inmates breaking ground for a new hospital wing discovered the skeletons of 100 people secretly buried in a mass grave a century ago. A monograph accompanying the exhibition includes descriptions by forensic anthropologist Michael Hoffman of the skulls' evidence of syphilis, dental abcesses and mental retardation. Although Modica's artistic examination is equally precise, it takes a dramatically different direction.
To make her images, Modica uses an 8" * 10" view camera; this cumbersome equipment, and the slow working pace that it requires, compliments the thoughtfulness and contemplative imagination with which she approaches her subject. Paradoxically, Modica has noted that it was because of the formality and precision of her images that the skulls began to take on a more human aura. This humanness is in striking contrast to the scientific language used to describe the skulls. The forensic description of A15: male, 56 years old, for example, tells us that there is a lesion involving the bone above the left front teeth, "probably the result of an abcess." However, Modica's image stares in quiet contemplation. There is a desperation in the sad tug of the eyes. This is a portrait, not a record of physical remains. Repeatedly we see that while medical examination attempts to reconstruct some aspect of physicality, Modica's examination manages to reestablish the presence of a soul.
Unfortunately, reproductions of these works do not come close to expressing the warmth and breadth of the original photographs. The platinum–palladium process that Modica uses in making her 8" * 10" contact prints produces a greater tonal range than can be achieved in the silver prints more commonly used in black-and-white photography. The beauty of C4: male, 39 years old lies in the delicate subtlety of the surface texture, the pattern and the flow of the suture lines. This beauty and softness counteracts our more instinctive reaction to these images. Nonetheless, like the "vanities" of 17th-century still-life painting, the skulls force us to contemplate the inevitability of death.
Modica has gained widespread acclaim for her masterful ability to find beauty in difficult subject matter. She made her name with an ongoing series of photographs published under the title of Treadwell. This work follows an overweight, impoverished young girl and her family from rural America as they struggle to subsist. Modica turns that same empathy to the contemplation of these skulls and our fears of death.
In a time when the predominant method of dealing with thoughts of death and dying is to put them out of mind, Modica's work echoes the 19th-century practice of creating memento mori by photographing the dead on their death-beds or in their coffins. Similarly, Modica photographed these skulls on the ordinary cardboard boxes in which they were stored when she first encountered them. These skulls become a memento mori of anonymous people, people who ended up in an asylum and whose bodies went unclaimed after their deaths. Modica not only demonstrates a reverence for each death, but also respect for the person that was. Backed by her fantasies of lives that we will never know in any other way, her photographs allow us to rebuild the imaginary and to invent the stories behind these remains — not only of their physicality, but of their dreams, desires and pleasures. Andrea Modica is a graduate of Yale University. She has been a Guggenheim Fellow as well as a teacher at the International Center of Photography in New York. Her work has been collected by the Metropolitan Museum of Art, the Museum of Modern Art, the San Francisco Museum of Modern Art, the Whitney Museum and the Bibliothèque Nationale in Paris, as well as by private collectors worldwide. A monograph of this work, Human Being, has been released by Nazraeli Press. A selection from this exhibition can be found at www.houkgallery.com. Andrea Modica is represented exclusively by Edwynn Houk Gallery in New York.
Jonah Samson
Copyright 2001 Canadian Medical Association or its licensors |
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"Perhaps. But I trusted my own doctor and, really, I'm not the kind of person who runs to the hospital with every ache or pain."
