Positive: One Doctor's Personal Encounter with Death, Life, and the US Healthcare System by Michael Saag; Greenleaf Book Group Press
It appears for the last two years we have been experiencing a springtime of remembrance. Beginning with the poignant and harrowing documentary We Were Here, and continuing with the forthcoming May HBO TV version of Larry Kramer's seminal play The Normal Heart, apparently enough time has elapsed so we can begin recollecting the painful HIV epidemic years which killed thousands of Americans from the early 1980s to 1996, the miracle year of the retroviral cocktail that commuted the death sentence of AIDS into a chronic disease. As part of this retrospective journey, one of the principal researcher/clinicians in the fight against HIV, Dr. Michael Saag, has written an elegiac memoir, spanning the earliest years of the "plague" to its contemporary incarnation.
Serendipitously, Saag's residency in infectious disease with a specialty in molecular virology at the University of Alabama at Birmingham (UAB) coincided with the onset of AIDS. His critical research contributions are too numerous to list, but he describes many of his discoveries in lay not-too-technical jargon. His key legacy was the concept of the 1917 Clinic at UAB, a comprehensive HIV outpatient center in which patient care was provided in conjunction with clinical outcomes research, so a "dynamic interface" was created among the medical investigators, caregivers, and patients, with the latter receiving the latest innovative treatments. Prior to its start in 1988, Saag visited San Francisco General Hospital for a day and its celebrated Ward 86. He not only observed staff and patients, but also asked everyone the same question, "If you were starting over from scratch, how would you design an AIDS clinic?" and took reams of notes. Thus he founded the 1917 Clinic as a new, improved version of Ward 86.
From this clinic, the haunting, inspiring stories of patients become the core component of Saag's book. We realize what an extraordinary doctor Saag is, in that he was able to engender hope and confidence during a time of intense suffering, institutional malfeasance, and certain death. Particularly heartbreaking were those who tested positive for HIV, and in helping their partners and friends already stricken with the disease saw their grim future, but "most of them loved well enough to continue providing care despite their own illness or illness-to-come." The straight Saag was exposed to the stigma of being gay and remarked astutely that "after coming out, patients became dead to their families, but with HIV were dying again." It is astounding how Saag's compassionate portrayals of his patients resurrect them from the dead, with their struggles and triumphs seeming as relevant today as they did 30 years ago.
One case in particular brought me to tears. Michael, a dancer with the Joffrey Ballet and National Ballet Company, was given a diagnosis of pneumocystis pneumonia in 1987 and had to be put on a ventilator for six weeks to be kept alive. For most of that time, he was totally paralyzed by a drug to keep his muscle contractions from interfering with the ventilation. How did he persevere through this normally intolerable process where one day can seem like a week, with a tube down his throat and the perpetual sensation of breathlessness? He insisted his treatment begin each day at 5:30 a.m., when he would imagine himself performing his previous moving exercises, from stretches to rehearsing every step of every dance routine he had ever performed. "As the ventilator pumped out 20 breaths per minute, Michael used its cadence as his metronome." All Saag's case studies are exhilarating, gut-wrenching, and triumphs of the human spirit amidst travail, including his still-living cousin and AIDS advocate, Mary Fisher, who contracted the illness from her husband. She gave the historic star-making AIDS talk at the 1992 Republican Convention, challenging the party to "set aside prejudice and politics to make room for compassion and sound policy."
Aside from the AIDS memoir, half the book is a manifesto attacking our broken healthcare system and offering a vision of a more comprehensive, accessible system focused more on patients and less shaped by politicians, insurers, and lobbyists. Saag details throughout his book why the US healthcare system even with Obamacare lags in all categories behind Canada and Europe except cost, where many procedures and drugs are among the most expensive in the world. Saag's remedies (i.e., eliminating fee-for-service and establish use on an as-needed basis; patient first in all decision-making, including end-of-life decisions; creating metrics for clinical outcomes, rewarding hospitals and providers that meet the standards and paying less to those that don't; mandating that all electronic medical records systems speak the same language; allowing the government to bid competitively for drug prices) are all reasonable with well-articulated and intelligible (if sometimes policy-wonkish) justifications that will appeal to left-leaning SF Bay Area residents.
Saag has, in effect, written two books that have been crammed into one, alternating chapter by chapter, diluting the emotional power of both, especially the memoir. Two separate books would have been more compelling, which could then have provided space for longer and additional stories from the AIDS years that are far more captivating than dreary healthcare statistics, even though Saag effectively uses examples from his HIV practice to bolster his reform arguments.
Even with this critique, Saag's memoir is crucial reading, for it records for posterity the historic scientific and sociological fight against HIV in which we are still actively engaged. Quoting her speech to celebrate the 25th anniversary of the 1917 Clinic, Mary Fisher said, "I've returned today as evidence that death did not have the last word on AIDS." We are blessed with committed doctors like Michael Saag who fought ostracism, the status quo, government bureaucracy, hospital institutionalism, pharmaceutical back-pedaling, and a cunning virus, to make Mary's statement a reality today for thousands of thriving HIV+ patients.