Open Heart

by Jay Neugeboren

  Readers should also see “How Sick Is Modern Medicine?” by Richard Horton, New York Review of Books (November 2, 2002), pages 46–50 (especially page 50).

  41 And the key element: Jerry has published a number of papers on adherence and antiretroviral therapy, papers demonstrating that adherence is central to successful suppression of HIV, and that trust—the doctor-patient relationship—is central to successful adherence. He has also, in these and many other papers, suggested strategies that make trust—and success—more likely. See, for example: A. Williams and G. H. Friedland, “Adherence, Compliance, and HAART,” AIDS Clinical Care 9:7 (1997), pages 51–54,58; F. L. Altice and G. H. Friedland, “The Era of Adherence in Antiretroviral Therapy,” Annals of Internal Medicine 129 (1998), pages 503–505; G. H. Friedland and A. B. Williams, “The Future: Attaining Higher Goals in HIV Treatment: The Central Importance of Adherence,” AIDS 13, Suppl 1 (1999), pages S61-S72; B. Soloway and G. H. Friedland, “Antiretroviral Failure: A Biopsychosocial Approach,” AIDS Clinical Care 12:3 (2000), pages 23–25,30; and F. Altice, F. Mostashari, and G. H. Friedland, “Trust and the Acceptance of and Adherence to Antiretroviral Therapy,” Journal of Acquired Immune Deficiency Syndromes (2001), pages 47–58.

  43 Nor, in two-thirds: Klaidman, page 222, argues that “invasive treatments such as surgery and angioplasty are being used without good evidence that they provide any survival benefit over drugs. Where a benefit is provided, it is in pain relief and exercise tolerance.” See also pages 180–181.

  Rates of restenosis—a return of blockages after angioplasty, stenting, or bypass—vary widely. A study in Circulation (November 2001) reports as many as 40 percent of patients having a return of blockages and requiring additional treatment; after six months, 607 out of 2,690 patients (reported on in this study) had blockages of 50 percent or more in the arteries where angioplasty had been performed. Early studies of stents coated with an immunosuppressive drug are promising and show restenosis rates below 5 percent. See “Comparison of Angioplasty with Stenting, with or Without Abciximab, in Acute Myocardial Infarction,” by Gregg W. Stone et al., in NEJM 346:13 (March 28, 2002), pages 957–966; and also “A Randomized Comparison of a Sirolimus-Eluting Stent with a Standard Stent for Coronary Revascularization,” by Marie-Claude Morice et al., in NEJM 346:23 (June 6, 2002), pages 1773–1780.

  When I ask Rich about this, he writes back: “Restenosis: without stent—30–50% after 3–6 months; with stent—20–30% after 3–6 months; with drug coated stent—< 5%. But this is based on VERY preliminary experimentation, and history shows that early enthusiastic reports do NOT hold up. Should be helpful, but how much (in my mind) is an open question.”

  44 “a significant mental decline”: As to postsurgical depression, according to the New York Times, “there are no conclusive statistics about the incidence of depression after surgery. Estimates vary widely, from fewer than a third of patients to more than three-quarters” (Randi Hutter Epstein, “Facing Up to Depression After a Bypass,” New York Times, November 27, 2001). The quotation regarding mental functioning after bypasses is from “Mental Decline Is Linked to Heart Bypass Surgery,” by Denise Grady, New York Times, February 8, 2001. See also, for example, Circulation 105:1176 (2002).

  45 “the kinds of things”: Thomas, pages 35–42.

  4. It’s Not Viral, Goddamnit!

  49 My journal entry: I have transcribed my journal entries as in the original, complete with abbreviations, spelling errors, grammatical errors, and gross lapses of judgment.

  64 “V worried”: When Rich reads this journal entry, he writes that he is struck by two things: First—your deep premonition and recognition that you had a life-threatening illness, despite what your doctors were telling you. I’ve long believed that on some level, patients know how sick they really are, and how close they are to death, but for whatever reason (overwhelming fear, admission of vulnerability), need to keep it a deep, dark secret within. Second is that the pain was…often too in chest… shit!” You certainly NEVER told me about that, and I doubt you told your docs. I’ve long suspected that patients often keep crucial tell-tale symptoms from “the doctor,” know that the diagnosis they dread will probably then be made…

  65 “The Berlin-born”: Nuland, How We Die: Reflections on Life’s Final Chapter, page 33.

  66 I have dinner: When I call my friend John O’Sullivan, a physical therapist, and describe my symptoms for him and tell him that Doug thinks the problem is muscular but that I’ve been worried it might be my heart, he says it doesn’t sound like a muscular or rotator cuff problem, and advises me to see a cardiologist. (I call him after I arrive home from Yale-New Haven. “You were right,” I say, and tell him the story.)

  70 This property of aspirin: For the story of Dr. Craven and aspirin, see Weatherall, pages 103–104; and LeFanu, pages 311–312. For more recent views of aspirin’s uses, see Weatherall, pages 103–104; LeFanu, pages 311–312; Michael S. Lauer, “Aspirin for Primary Prevention of Coronary Events,” NEJM 346:19 (May 9, 2002), pages 1468–1474; and both “Aspirin: Superhero or Problem Pill?” and “How Aspirin Works Its Magic,” by Abigail Zuger, New York Times, April 18, 2000. See also an October 24, 2002, article in NEJM by Dennis T. Mangano and others, “Aspirin and Mortality from Coronary Bypass Surgery,” which concludes that “early use of aspirin after coronary bypass surgery is safe and is associated with a reduced risk of death and ischemic complications involving the heart, brain, kidneys, and gastrointestinal tract” (vol. 347, pages 1309–1317).

  5. Coronary Artery Bypass Graft Times Five

  77 I think of: Susan Sontag, Illness as Metaphor, page 31.

  6. The Ponce de Leon Thing

  86 “Indeed”: Gerald Grob, The Deadly Truth: A History of Disease in America, page 1.

  87 “Our lack of success”: Weatherall, page 88.

  87 “Our ability”: Ibid., page 92.

  90 “it was time”: When Gerald Grob and Dan Fox, director of the Mil-bank Memorial Fund, tried to trace the origin of the surgeon general’s statement, it turned out that he had never made it. “What probably happened was that he was misquoted,” Gerald Grob says, “and the misquote was passed down from author to author” [personal communication].

  90 “developments in research”: William B. Schwartz, Life Without Disease: The Pursuit of Medical Utopia, pages 149, 153.

  90 “The virtual disappearance”: Weatherall, page 18.

  91 In 1900: When considering the 1900 figures, note that in 1900 only eight states and the District of Columbia were regularly reporting causes of death; coverage would expand gradually, but complete national coverage would not occur until 1933. In addition, in the years prior to 1933 urban areas were overrepresented, and rural areas underrepresented. The differentials between white and nonwhite populations, thus, were somewhat overstated, though urban blacks probably had higher death rates than blacks from the rural South, the region where most blacks then lived. See “Trends in Infectious Disease Mortality in the United States During the 20th Century,” by Gregory L. Armstrong, Laura A. Conn, and Robert W. Pinner, JAMA 281 (January 6, 1999), pages 61–66; and Grob, page 316, footnote 32.

  I’ve taken statistics on mortality from the National Center for Health Statistics (NCHS) and the U.S. Census Bureau. See especially NCHS, Health, United States, 2000, with Adolescent Health Chartbook, Hyattsville, MD, 2000.

  From 1911 through 1935: Figures on mortality are from Grob, Chapter 9, “The Discovery of Chronic Illness,” pages 217–242.

  91 “Of the fifteen leading causes”: The statistics are taken from Grob (pages 200ff and 248) and John B. and Sonja M. McKinlay, “The Questionable Contribution of Medical Measures to the Decline of Mortality in the United States in the Twentieth Century,” Milbank Memorial Fund Quarterly: Health and Society 55:3 (Summer 1977), pages 405–428.

  92 “Unsurprisingly”: Herrick’s remark is quoted in Klaidman, page 19. Although Herrick’s theory: See Klaidman, pages 15–19, for more about Marcus DeWood’s confir
mation of Herrick’s theory.

  93 In 1900: See Grob, page 192.

  94 94 The mortality rates: The death rates for those under one year of age was 162.4 per thousand, while the comparable figure for the one-through-four-year-old group was 19.8 per thousand. (The death rate represents the percentage of deaths in any given year relative to total population; the mortality rate represents the percentage of a specific age group dying by a certain age—for example, infant mortality represents the number of live-born babies dying within the first year of life.) Grob, pages 192–193.

  94 However, by 1940: The infant mortality rate in 1940 was 47 per thousand. For this and the figures concerning the falling mortality rates of infants and toddlers, see Grob, pages 200–201.

  94 Moreover, infectious disease: For the decline of measles, whooping cough, and scarlet fever as causes of death, see Grob, page 205.

  94 “nearly 85%”: This and other statistics on infant and child mortality are from “Annual Summary of Vital Statistics: Trends in the Health of Americans During the 20th Century,” by Bernard Guyer, Mary Anne Freedman, Donna M. Strobino, and Edward J. Sondik, in Pediatrics 2000, vol. 106, pages 1307–1317.

  For the poor record of the United States, see Garrett, page 550.

  95 The belief: “The military metaphor has historically had the most pervasive influence over both the practice and financing of medicine in the United States,” George J. Annas writes in Some Choice: Law, Medicine, and the Market, page 45. “Examples are legion,” he continues. “Medicine is a battle against death. Diseases attack the body, uniformed physicians intervene. We are almost constantly engaged in wars on various diseases, such as cancer and AIDS…”

  96 The U.S. remains: See a New York Times interview with Dr. Sandra Adamson Fryhofer and Dr. Richard Dolinar, conducted by Gale Scott, August 21, 2001, “Facing Off: Prescription Pitches—Are Direct-to-Consumer Pharmaceutical Advertisements Confusing to Patients?”

  96 In widely dispersed: I quote from a Dan Reeves ad in the New York Times, December 19, 2000.

  96 Columbia Presbyterian: The Columbia/Cornell ad appeared in the New York Times on June 18, 2000. The America’s Pharmaceutical Companies ad is from the New Yorker (June 5, 2000).

  97 Phil is blunt: Consider, with respect to direct-to-consumer advertising, a sixteen-page brochure promoting Bayer aspirin—“Become a Heart-Strong Woman”—in which Bayer invites women to “Get Smart About Cardiovascular Disease.” (“Did You Know…,” the headline on the front page reads, “Heart Disease Is the Number 1 Killer of Women in the United States?”)

  “Women—take charge of your health,” the brochure advises, and after listing the common symptoms of heart attacks and stroke (and advising: “Consider Aspirin to Prevent a Stroke”), it asks women to assess their risk factors. To do this, women are given a Heart/Stroke Quiz (“Factors You Can Control”). There are eleven questions. A woman receives 3 points for every “a” answer (increases risk), 1 point for every “b” answer (lowers risk), and 2 points for every “c” answer (“don’t know”). If a woman answers “b” for all eleven questions—that is, if a woman does not smoke, has a cholesterol level below 200, does not have high blood pressure, is not overweight, exercises often, is not frequently tense, angry, or irritable, follows the USA-recommended daily diet, does not have a family history of heart disease or stroke, is not African American, is not going through menopause or postmenopausal, and does not have diabetes, her score will be 11. “Now, add up your points,” the brochure says, and if your score is between 11 [sic] and 17 points, the brochure announces, “you have some risk factors for heart attack and stroke” (italics added).

  97 “I call it”: For an excellent summary concerning the sham and scam of anti-aging remedies, see “No Truth to the Fountain of Youth,” by S. Jay Olshansky, Leonard Hayflick, and Bruce A. Carnes, in Scientific American (June 2002), pages 92–95, and the accompanying website: www.sciam.com/explorations/2002/051302/aging/. The article’s lead headline reads: “Fifty-one scientists who study aging have issued a warning to the public: no anti-aging remedy on the market today has been proved effective. Here’s why they are speaking up.” Not only do none of the remedies slow, stop, or reverse aging, but some, the scientists warn, “can be downright dangerous.”

  97 “The belief that disease”: The quotations regarding the unknown etiologies of many modern diseases are from Grob, pages 2–5.

  97 Then, too: “Certainly,” LeFanu writes concerning the genetic causes of disease, “the imagery of DNA as the ‘master molecule, the blueprint from which everything flows’ is vivid enough, but genes by themselves can do nothing without interacting with other genes operating within the context of the whole cell within which they are located” (page 278). And based on a study of 44,788 “pairs of twins listed in the Swedish, Danish, and Finnish twin registries,” conducted “to assess the risks of cancer at 28 anatomical sites for the twins of persons with cancer,” the authors of a study in NEJM conclude, “Inherited genetic factors make a minor contribution to susceptibility to most types of neoplasms. This finding indicates that the environment has the principal role in causing sporadic cancer” (italics added). Paul Lichtenstein, Niels V. Holm, et al., NEJM: 343:2 (July 13,2000), pages 78–85.

  For a comprehensive listing of single-gene diseases, of which there are over four thousand, see Victor A. McKusick, Mendelian Inheritance in Man: A Catalog of Human Genes and Genetic Disorders.

  98 Writing in: Daniel Callahan, “Death and the Research Imperative,” NEJM 342:9 (March 2, 2000), pages 654–656.

  98 “Since we are”: William Haseltine, quoted by Nicholas Wade, “Apostle of Regenerative Medicine Foresees Longer Health and Life,” New York Times, December 18, 2001.

  7. Listen to the Patient

  103 According to figures: The figure on infant mortality is from 1996 and is in Health, United States, 2000, published by the NCHS, page 157.

  106 Thus, in one recent: Meir J. Stampfer et al., “Primary Prevention of Coronary Heart Disease in Women Through Diet and Lifestyle,” NEJM 343:1 (July 6,2000), pages 16–22.

  107 So dramatic: The study about type 2 diabetes, “Prevention of Type 2 Diabetes Mellitus by Changes in Lifestyle Among Subjects with Impaired Glucose Tolerance,” is from NEJM (May 3, 2001), pages 1343—1350, and is reported in the New York Times (“Diet and Exercise Are Found to Cut Diabetes by over Half,” by Kenneth Chang), August 9, 2001.

  107 Most of us: In 1935, for example, 6.5 million Americans—5 percent of the population—were over age sixty-five; in 2001, 13 percent of the population—more than 35 million Americans—were in this age group. These statistics are from Jane E. Brody, “Ways to Make Retirement Work for You,” New York Times, July 24, 2001, page 225.

  The distinction between “life span” and “life expectancy” is from Steven Harrell’s letter to the editors, New York Review of Books (December 16,1999).

  108 Consider the following: Grob, page 61. Malaria was also present in New England; though of lesser significance than in the Chesapeake area and southern colonies, it did not disappear from New England until the end of the eighteenth century (Grob, page 60). For information on mortality and disease in early American colonies, see Grob, especially Chapter 3, “Colonies of Sickness,” pages 48–69.

  108 In the United States: For the decline of infant mortality in the United States, decade by decade, see S. Jay Olshansky and A. Brian Ault, “The Fourth Stage of the Epidemiologic Transition: The Age of Delayed Degenerative Diseases,” Milbank Quarterly 64:3 (1986), page 375.

  There is little evidence of infectious disease being important at any age in hunter-gatherer societies. Instead, as Kim Hill explains, “trauma, accident, violence, parasites, etc. are much more common in hunter-gatherers (indeed, theoretical work in epidemiology would lead one to doubt whether small human residential groups could be effective reservoirs for most modern infectious diseases). Human hunter-gatherers are like most other mammals. Mortality rates of the young are very high, but not from
infectious diseases usually” [personal communication].

  Approximately 55 percent of foraging hunter-gatherer (!Kung, Hadz, Agta, and Cuiva) children survive to age fifteen. About 65 percent of Ache and Kutchin children survive to fifteen. But “it is clear,” writes Renée Pennington, “that adults living under the worst conditions (such as the Agta) have a good chance of surviving the reproductive span.” Given the high proportion of survivors during the adult years—among Ache living on reservations since 1970, 40 percent of those who live to twenty live to seventy; among !Kung Bushmen, those who live to fifteen probably live past seventy—it is apparent,” Pennington notes, “that most 15-year-olds have a better chance of surviving the next 35 years than they did getting through the first 15.” The quotation is from “Hunter-Gatherer Demography,” in Hunter-Gatherers: An Interdisciplinary Perspective, page 194.

  Given how utterly wretched the living conditions are for these hunter-gatherers, these findings tell us much about the history of our species’ mortality. I am indebted to Kim Hill, Henry Harpending, Renee Pennington, and Magdalena Hurtado for a brief glimpse into this fascinating world, and refer readers to Hill and Hurtado’s Ache Life History and Nancy Howell’s Demography of the Dobe !Kung.

  109 The introduction of antibiotic: See Pediatrics, 2000, for information on child and infant mortality.

  109 “that the introduction”: McKinlay and McKinlay, page 406.

  109 “after which”: Ibid., pages 414 and 408. See also Thomas McKeown et al., “An Interpretation of the Decline of Mortality in England and Wales During the Twentieth Century,” Population Studies 29, pages 391–422 [422].

  110 Dr. Thomas McKeown: “The main influences on the decline in mortality,” McKeown states, “were improved nutrition on air-borne infections” and “reduced exposure (from better hygiene) on water- and food-borne diseases,” and he suggests that “the advancement in nutrition was the major influence” on the decline of mortality.