Notes

INTRODUCTION

1. “About the Crisis,” Partnership to Fight Chronic Disease, www.fightchronicdis ease.org/issues/about.cfm.

2. “SWHR Timeline,” Society for Women’s Health Research, www.womenshealthresearch.org/site/PageServer?pagename=about_timeline.

3. Porter, The Greatest Benefit to Mankind, 15.

4. Sontag, Illness as Metaphor and AIDS and Its Metaphors, 3.

5. Porter, Greatest Benefit to Mankind, 29.

CHAPTER 1: FROM PLATO TO POLIO

1. Wall, Encounters with the Invisible, 8.

2. Kamen, All in My Head, 90.

3. Sontag, Illness as Metaphor, 6.

4. Partnership to Fight Chronic Disease, “The Growing Crisis of Chronic Disease.”

5. Kamen, All in My Head, 63.

6. Morris, “How To Speak Postmodern,” 1.

7. Ibid., 2.

8. Ibid.

9. Adler, Medical Firsts, 8.

10. Ibid., 9.

11. Ibid., 10–11.

12. Ibid., 11.

13. Porter, Greatest Benefit to Mankind, 56.

14. Bergdolt, Wellbeing, 37–38.

15. Ibid., 38.

16. Ibid., 39.

17. Kennedy, A Brief History of Disease, 28.

18. Ibid.

19. Porter, Greatest Benefit to Mankind, 84.

20. Ibid.

21. Kennedy, A Brief History of Disease, 33.

22. Herek, “Thinking About AIDS and Stigma,” 595.

23. Kennedy, A Brief History of Disease, 76.

24. Porter, Greatest Benefit to Mankind, 122–123.

25. Ibid., 123.

26. Ibid., 125.

27. Ibid., 130.

28. Ibid., 257.

29. Kelly, Medicine Becomes a Science, 1.

30. Ibid.

31. Ibid., 8.

32. Porter, Blood and Guts, 44.

33. Kelly, Medicine Becomes a Science, 12.

34. Sontag, Illness as Metaphor, 14–15.

35. Maugham, “Sanatorium,” 545.

36. Kelly, Medicine Becomes a Science, 24–25.

37. United States Department of Health and Human Services, “The Great Pandemic,” http://1918.pandemicflu.gov/the_pandemic/04.htm.

38. Grob, The Deadly Truth, 264.

39. Porter, Greatest Benefit to Mankind, 15.

40. Ibid.

41. Kelly, Medicine Becomes a Science, 84.

42. Ibid.

43. Grob, The Deadly Truth, 192.

44. Kelly, Medicine Becomes a Science, 85.

45. Porter, Greatest Benefit to Mankind, 277.

46. Grob, The Deadly Truth, 245.

CHAPTER 2: AN AWAKENING

1. Roberts, “The Commission on Chronic Illness,” 296.

2. Ibid., 295.

3. Ibid., 296.

4. Ibid.

5. Sidell, “Adult Adjustment to Chronic Illness,” 6.

6. Joffe, “Is This Duo Doable?”

7. Sidell, “Adult Adjustment to Chronic Illness,” 2.

8. Elliott, Better than Well, 44.

9. Nakazawa, The Autoimmune Epidemic, 24.

10. Ibid., 36.

11. Ibid., 38.

12. Centers for Disease Control and Prevention, “Chronic Disease Overview,” www.cdc.gov/chronicdisease/overview/index.htm.

13. Ibid.

14. Rao, “Looking Back and Looking Forward,” Preventing Chronic Disease.

15. Rothman, Strangers at the Bedside, 51–53.

16. Sontag, Illness as Metaphor, 64–65.

17. National Institutes of Health, “The 1971 National Cancer Act: Investment in the Future,” www.nih.gov/news/pr/mar97/nci-26c.htm.

18. Rothman, Strangers at the Bedside, 1.

19. Ibid., 16.

20. Ibid., 30.

21. Ibid., 15.

22. Ibid.

23. Ibid., 144.

24. NPR, “Remembering the Tuskegee Experiment,” www.npr.org/programs/morning/features/2002/jul/tuskegee/.

25. Centers for Disease Control and Prevention, “The Tusekegee Timeline,” www.cdc.gov/tuskegee/timeline.htm.

26. NPR, “Remembering the Tuskegee Experiment.”

27. Skloot, The Immortal Life of Henrietta Lacks, 4.

28. Rothman, Strangers at the Bedside, 3.

29. National Institutes of Health, “Timeline of Laws,” http://history.nih.gov/about/timelines_laws_human.html#1949.

30. Rothman, Strangers at the Bedside, 155.

31. Lepore, “The Politics of Death,” 64.

32. National Hospice and Palliative Care Organization, “NHPCO Facts and Figures,” 5.

33. Long, “June 11, 1985: Karen Ann Quinlan Dies,” www.wired.com/science/discoveries/news/2008/06/dayintech_0611.

34. Lepore, “The Politics of Death,” 66.

35. Centers for Medicare and Medicaid Services, “Tracing the History of CMS Programs,” 1.

36. Ibid., 3–4.

37. Daaleman, “Reorganizing Medicare.”

38. Centers for Medicare and Medicaid Services, “Tracing the History of CMS Programs,” 5.

39. Rothman, Strangers at the Bedside, 11.

CHAPTER 3: DISABILITY RIGHTS, CIVIL RIGHTS, AND CHRONIC ILLNESS

1. Wendell, “Unhealthy Disabled,” 19.

2. Ibid., 21.

3. Ibid., 25.

4. Goffman, Stigma: Notes On the Management of Spoiled Identity, 4.

5. Disability Rights and Independent Living Movement, “Introduction,” http://bancroft.berkeley.edu/collections/drilm/introduction.html.

6. King, Pink Ribbons, Inc., 106.

7. Quigley, “Hospitals and the Civil Rights Act of 1964,” 455.

8. Ibid., 457.

9. Hoffman, “Health Care Reform and Social Movements,” 80.

10. Disability Rights and Independent Living Movement, “Timeline,” http://bancroft.berkeley.edu/collections/drilm/resources/timeline.html.

11. Barnartt and Scotch, Disability Protests, 18.

12. Rothman, Stranger at the Bedside, 205.

13. Disability Rights and Independent Living Movement, “Timeline.”

14. Minnesota Statewide Independent Living Council, “A Chronology of the Disability Rights Movements,” www.mnsilc.org/chronology.htm.

15. NPR, “A Look Back At ‘Section 504,’” www.npr.org/programs/wesun/features/2002/504/.

16. Disability Rights and Independent Living Movement, “Timeline.”

17. Ibid.

18. Wendell, “Unhealthy Disabled,” 31.

19. Ibid.

20. Disability Rights and Independent Living Movement, “Timeline.”

CHAPTER 4: THE WOMEN’S HEALTH MOVEMENT AND PATIENT EMPOWERMENT

1. Kamen, All in My Head, 98.

2. Gilman, “The Yellow Wallpaper,” www.library.csi.cuny.edu/dept/history/lavender/wallpaper.html.

3. U.S. Department of Health and Human Services, “A Century of Women’s Health,” 17.

4. Kaysen, The Camera My Mother Gave Me, 63.

5. Ibid.

6. Barnartt and Scotch, Disability Protests, 20.

7. Womenshealth.gov, “Infertility: Frequently Asked Questions,” www.womenshealth.gov/faq/infertility.cfm#b.

8. American Autoimmune Related Diseases Association, “Autoimmunity: A Major Women’s Health Issue,” www.aarda.org/women_and_autoimmunity.php.

9. Ibid.

10. U.S. Department of Health and Human Services, “A Century of Women’s Health,” 9.

11. Hoffman, “Health Care Reform and Social Movements,” 75.

12. King, Pink Ribbons, Inc., xiii.

13. Morgen, Into Our Own Hands, x.

14. National Organization for Women, “NOW FAQs,” www.now.org/organization/faq.html#found.

15. U.S. Department of Health and Human Services, “A Century of Women’s Health,” 3.

16. Ibid., 19.

17. Morgen, Into Our Own Hands, 4.

18. Morgen, Into Our Own Hands, 4–5.

19. Ruzek, “Transforming Doctor-Patient Relationships,” 182.

20. Ibid.

21. Rothman, Strangers at the Bedside, 144.

22. Ibid., 143.

23. Ibid.

24. U.S. Department of Health and Human Services, “A Century of Women’s Health,” 3.

25. Ibid.

26. Boulis and Jacobs, The Changing Face of Medicine, 2.

27. Morgen, Into Our Own Hands, 129.

28. Ibid., 4–5.

29. Ibid., 122.

30. Hoffman, “Health Care Reform and Social Movements,” 80.

31. Kamen, All in My Head, 98.

CHAPTER 5: CULTURE, CONSUMERISM, AND CHARACTER

1. “The Denver Principles,” http://actupny.org/documents/Denver.html.

2. Ibid.

3. Sidell, “Adult Adjustment to Chronic Illness,” 5.

4. Kerson, Understanding Chronic Illness, 32.

5. King, Pink Ribbons, Inc., 48.

6. Elliott, Better than Well, xvii.

7. King, Pink Ribbons, Inc., 48.

8. Elliott, Better than Well, 61.

9. Boehmer, The Personal and the Political, 12.

10. Frontline, “25 Years of AIDS,” www.pbs.org/wgbh/pages/frontline/aids/cron/.

11. Ibid.

12. Ibid.

13. Herek, “Thinking About AIDS and Stigma,” 595.

14. Ibid., 596.

15. Hoffman, “Health Care Reform,” 81.

16. Boehmer, The Personal and the Political, 3.

17. The Body, “A History of the People With AIDS Self-Empowerment Movement,” www.thebody.com/content/art31074.html?ts=pf.

18. “The Denver Principles,” http://actupny.org/documents/Denver.html.

19. King, Pink Ribbons, Inc., 121.

20. Ratcliff, Women and Health, 105.

21. Susan G. Komen for the Cure, “Breast Cancer Statistics,” ww5.komen.org/BreastCancer/Statistics.html#US.

22. Kedrowski and Sarow, Cancer Activism: Gender, Media, and Public Policy, 20.

23. Ibid., 21.

24. Ibid.

25. U.S. Department of Health and Human Services, “A Century of Women’s Health,” 31.

26. Khan, “Susan G. Komen Apologizes,” http://abcnews.go.com/blogs/politics/2012/02/susan-g-komen-apologizes-for-cutting-off-planned-parenthood-funding/.

27. Kedrowski and Sarow, Cancer Activism: Gender, Media, and Public Policy, 24.

28. Ibid., 25.

29. Ibid.

30. Boehmer, The Personal and the Political, 25.

31. King, Pink Ribbons, Inc., xx.

32. Ibid., 49.

33. Ibid., xxiii.

34. Susan G. Komen for the Cure, “United Against Breast Cancer,” 6–9.

35. Sulik, “Enter the Komen Bandits,” http://gaylesulik.com/?p=8813.

36. King, Pink Ribbons, Inc., 122.

37. Rosenthal, Everything Changes, 7.

38. Wall, Encounters with the Invisible, 209.

39. Ibid., xvii.

40. Ibid.

41. Huibers and Wessely, “The Act of Diagnosis,” 3.

42. Ibid.

43. Wall, Encounters with the Invisible, 9.

44. Strauss, “History of Chronic Fatigue Syndrome,” 3.

45. Ibid., 5.

46. Klonoff, “Chronic Fatigue Syndrome,” 182.

47. Centers for Disease Control and Prevention, “CFS Case Definition,” www.cdc.gov/cfs/general/case_definition/index.html.

48. Wall, Encounters with the Invisible, 24.

49. Tuller, “Chronic Fatigue Syndrome and the CDC,” www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale.

CHAPTER 6: A SLIGHT HYSTERICAL TENDENCY

1. Tuller, “Chronic Fatigue Syndrome No Longer Seen as ‘Yuppie Flu,’” www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-ess.html.

2. Morris, The Culture of Pain, 20.

3. American Pain Foundation, “The Problem with Pain,” www.painfoundation.org/get-involved/problem-with-pain.html.

4. Chronic Pain Research Alliance, “Women in Pain,” 3.

5. U.S. Department of Health and Human Services, “A Century of Women’s Health,” 2.

6. Society for Women’s Health Research, “SWHR Timeline,” www.womenshealthresearch.org/site/PageServer?pagename=about_timeline.

7. U.S. Department of Health and Human Services, “A Century of Women’s Health,” 14.

8. Society for Women’s Health Research, “SWHR Timeline.”

9. Ibid.

10. U.S. Department of Health and Human Services, “A Century of Women’s Health,” 33.

11. Society for Women’s Health Research, “SWHR Timeline.”

12. U.S. Department of Health and Human Services, “A Century of Women’s Health,” 4.

13. Ibid., 33.

14. Ibid.

15. Hoffman and Tarzian, “The Girl Who Cried Pain,” 21.

16. Ibid.

17. Chen et al., “Gender Disparity in Analgesic Treatment,” 416.

18. Tuller, “Chronic Fatigue Syndrome No Longer Seen as ‘Yuppie Flu.’ “

19. Thernstrom, The Pain Chronicles, 8.

20. Medicalnewstoday.com, “More Difficult for Doctors to Diagnose Complex Sources of Pain,” www.medicalnewstoday.com/releases/71607.php.

21. Morris, The Culture of Pain, 4.

22. ScienceDaily.com, “Chronic Fatigue Syndrome Not Linked to XMRV,” www.sciencedaily.com/releases/2011/05/110504151337.htm.

23. Cohen, “Updated: In a Rare Move, Science without Authors’ Consent Retracts Paper,” http://news.sciencemag.org/scienceinsider/2011/12/in-a-rare-move-science-without-a.html#.TyM7mf8EZP4.mailto.

24. U.S. Department of Health and Human Services, “A Century of Women’s Health,” 16.

25. Marts and Resnick, Society for Women’s Health Research, “Scientific Report Series,” 1.

26. Ibid., 6.

27. Ibid.

28. Ibid.

29. Ibid., 4.

30. Fillingim et al., “Sex, Gender, and Pain,” www.sciencedirect.com/science/article/pii/S1526590008009097.

31. Greenberger, “Why One Size Doesn’t Fit All,” www.boston.com/bostonglobe/editorial_opinion/oped/articles/2009/02/23/why_one_size_doesnt_fit_all_in_medicine/.

32. Chronic Pain Research Alliance, “Women in Pain,” 9.

33. Institute of Medicine Report Brief, “Relieving Pain in America,” 2–3.

34. Ibid., 3.

35. Thernstrom, The Pain Chronicles, 8.

CHAPTER 7: INTO THE FRAY

1. Aronowitz, “Lyme Disease,” 97.

2. Ibid., 100.

3. Centers for Disease Control and Prevention, “Surveillance for Lyme Disease,” www.cdc.gov/mmwr/preview/mmwrhtml/ss5710a1.htm.

4. Infectious Diseases Society of America, “Frequently Asked Questions,” www.idsociety.org/lymediseasefacts.htm.

5. Fox, “The Social Life of Health Information,” 5.

6. Ibid.

7. Feder et al., “A Critical Appraisal of Lyme Disease,” 1428.

8. Ibid., 1422.

9. Grann, “Stalking Dr. Steere over Lyme Disease,” www.nytimes.com/2001/06/17/magazine/17LYMEDISEASE.html.

10. Ibid.

11. Connecticut Attorney General’s Office, “Attorney General’s Investigation Reveals Flawed Lyme Disease Guidelines Process,” www.ct.gov/ag/cwp/view.asp?a=2795&q=414284

12. Weintraub, Cure Unknown, 8.

13. Fox, “The Social Life of Health Information,” 2.

14. Fox and Purcell, “Chronic Disease and the Internet 2010,” 2.

15. Ibid., 3.

16. Ibid.

17. Fox, “The Social Life of Health Information,” 6.

18. Ibid.

19. Ibid., 20.

20. Grann, “Stalking Dr. Steere Over Lyme Disease.”

21. Ibid.

22. Tiejte, “The Worst Things People Say About Unvaccinated Kids,” http://blogs.babble.com/being-pregnant/2011/07/15/the-worst-myths-about-unvaccinated-kids/.

23. Frontline, “Interview: Anthony S. Fauci, M.D.,” www.pbs.org/wgbh/pages/frontline/vaccines/interviews/fauci.html.

24. Wallace, “An Epidemic of Fear,” www.wired.com/magazine/2009/10/ff_waronscience/all/1.

25. Frontline, “Interview: Jenny McCarthy,” www.pbs.org/wgbh/pages/frontline/vaccines/interviews/mccarthy.html#ixzz1UHiLAv1X.

26. Ibid.

27. Lin II, “Measles Are on the Rise,” http://articles.latimes.com/2011/may/14/local/la-me-measles-20110514.

28. Offit, Deadly Choices, xv.

29. Ibid., 173.

30. Centers for Disease Control and Prevention, “How Many Kids Have Autism?” www.cdc.gov/ncbddd/features/counting-autism.html.

31. Wang et al., “Common Genetic Variants.”

32. Parker-Pope, “Autism Risk for Siblings Higher than Expected,” http://well.blogs.nytimes.com/2011/08/16/autism-risk-for-siblings-higher-than-expected/.

CHAPTER 8: PARTICIPATORY MEDICINE AND TRANSPARENCY

1. Fox, “Peer-to-Peer Healthcare,” 6.

2. Ibid., 7.

3. E-Patientdave.com, “About ePatient Dave,” http://epatientdave.com/about-dave.

4. KevinMD.com, “About Kevin Pho, MD,” www.KevinMD.com/blog/about-kevin-md.

5. Ferguson and the e-Patient Scholars Working Group, “e-Patients,” ix–x.

6. Haig, “When the Patient Is a Googler,” 1, www.time.com/time/health/article/0,8599,1681838-1,00.html.

7. Trotter, “A Patient by Any Other Name,” www.fredtrotter.com/2010/12/21/a-patient-by-any-other-name/.

8. Barnes et al., “Complementary and Alternative Medicine Use,” 2.

9. Nakazawa, The Autoimmune Epidemic, 224.

10. Barnes et al., “Complementary and Alternative Medicine Use,” 1.

11. Ibid., 6.

12. Ibid., 1.

13. Porter, The Greatest Benefit to Mankind, 689.

14. National Center for Complementary and Alternative Medicine, “About NCCAM,” http://nccam.nih.gov/about/.

15. Alkon, “More Medical Schools Offer ‘Alternative’ Training,” http://yourlife.usa today.com/health/healthyperspective/post/2011/12/More-Medical-Schools-Teaching-About-Alternative-Medicine/585142/1.

16. Novella, “The Rise of Placebo-Based Medicine,” www.sciencebasedmedicine.org/index.php/the-rise-of-placebo-medicine/.

17. Nakazawa, The Autoimmune Epidemic, 224.

18. Barnes et al., “Complementary and Alternative Medicine Use,” 6.

19. Elliott, Better than Well, 147.

20. Barber, “Are We Really So Miserable?” www.salon.com/life/feature/2009/08/26/barber_age_of_anxiety/index.html.

21. Ibid.

22. Angell, The Truth About the Drug Companies, xx.

23. Donohue, Cevasco, and Rosenthal, “A Decade of Direct-To-Consumer Advertising,” 673.

24. Barber, “Are We Really So Miserable?”

25. Donohue, Cevasco, and Rosenthal, “A Decade of Direct-To-Consumer Advertising,” 673.

26. News-Medical.net, “Only 15 US Pharmaceutical Ads Adhere,” www.news-medi cal.net/news/20110819/Only-15-US-pharmaceutical-ads-adhere-to-FDA-Prescription-Drug-Advertising-Guidelines.aspx.

27. Ibid.

28. FDA.gov, “Prescription Drug Advertising: A Glossary of Terms,” www.fda.gov/Drugs/ResourcesForYou/Consumers/PrescriptionDrugAdvertising/ucm072025.htm#F, “F.”

29. Dreifus, “A Doctor Puts the Drug Industry Under the Microscope,” 5.

30. FDAzilla.com, “About FDAzilla,” http://fdazilla.com/about.aspx.

31. Gever, “Medical News: Advocacy Groups Mum on Pharma Ties,” www.medpagetoday.com/PublicHealthPolicy/Ethics/24328.

CHAPTER 9: WHAT FUTURE, AT WHAT COST?

1. American Diabetes Association, “Type 1,” www.diabetes.org/diabetes-basics/type1/?utm_source=WWW&utm_medium=DropDownDB&utm_content=Type1&utm_campaign=CON.

2. Roman, “Why Everyone Is So Angry,” www.philly.com/philly/blogs/public_health/Why-is-everyone-so-angry-at-Paula-Deen-.html.

3. Partnership to Fight Chronic Disease, “The Growing Crisis of Chronic Disease in the United States,” http://fightchronicdisease.org/resources/research.cfm.

4. Porter, The Greatest Benefit to Mankind, 15.

5. Ibid., 29.

6. Ibid.

7. Centers for Disease Control and Prevention, “Heart Disease Facts,” www.cdc.gov/heartdisease/facts.htm.

8. American Diabetes Association, “Diabetes Statistics,” www.diabetes.org/diabetes-basics/diabetes-statistics.

9. The President’s Council on Fitness and Sports, “Physical Activity Facts,” www.fitness.gov/resources_factsheet.htm.

10. Ibid.

11. Ibid.

12. Centers for Disease Control and Prevention, “Children and Diabetes,” www.cdc.gov/diabetes/projects/cda2.htm.

13. The President’s Council on Fitness and Sports, “Physical Activity Facts.”

14. Centers for Disease Control and Prevention, “Childhood Obesity Facts,” www.cdc.gov/healthyyouth/obesity/facts.htm.

15. Painter, “Study: US Obesity Rates Expected to Climb,” http://yourlife.usatoday.com/fitness-food/diet-nutrition/story/2011-08-29/Study-Obesity-rates-projected-to-climb-in-US-and-UK/50180424/1?csp=ylf.

16. Pollack, “Disease of Rich Extends Its Pain,” www.nytimes.com/2009/06/13/health/13gout.html?emc=eta1.

17. Ibid.

18. National Cancer Institute, “Cancer Trends Progress Report,” http://progressreport.cancer.gov/doc.asp?pid=1&did=2007&mid=vcol&chid=71.

19. National Association of Chronic Disease Directors, “Health Reform, Prevention, and Chronic Disease,” 2.

20. Partnership to Fight Chronic Disease, “2009 Almanac of Chronic Disease,” 16.

21. Center for Science in the Public Interest, “Food Additives,” http://cspinet.org/reports/chemcuisine.htm#nitrites.

22. Pollan, “Unhappy Meals,” http://michaelpollan.com/articles-archive/unhappy-meals/.

23. Bittman, “Vegan Before Dinnertime,” http://well.blogs.nytimes.com/2009/02/27/vegan-before-dinnertime/.

24. Centers for Disease Control and Prevention, “Basic Statistics,” www.cdc.gov/hiv/topics/surveillance/basic.htm.

25. Centers for Disease Control and Prevention, “2011 CDC Health Disparities and Inequalities Report,” 3.

26. Ibid., 2.

27. Lichtenfeld, “Cancer Facts and Figures 2011,” www.cancer.org/AboutUs/DrLensBlog/post/2011/06/17/Cancer-Facts-and-Figures-2011-Poverty-is-a-Carcinogen-Does-Anyone-Care.aspx.

28. American Cancer Society, “Cancer Facts and Figures 2011,” 24.

29. Puhl and Heuer, “The Stigma of Obesity,” 1.

30. Ibid., 4.

31. Asthma and Allergy Foundation of America, “Information About Asthma,” http://www.aafa.org/display.cfm?id=9&sub=42.

32. Ibid.

33. ScienceDaily.com, “Air Pollution Alters Immune Function,” www.sciencedaily.com/releases/2010/10/101005171042.htm.

34. Nakazawa, The Autoimmune Epidemic, 45.

35. Ibid., 51.

36. Ibid., 75.

37. Ibid., 248.

38. Harmon, “Where’d You Go with My DNA?” www.nytimes.com/2010/04/25/weekinreview/25harmon.html.

39. National Institutes of Health, “Stem Cell Basics,” http://stemcells.nih.gov/info/basics/basics1.asp.

40. Jan, “Most GOP Candidates Oppose Stem Cell Funding,” www.boston.com/news/science/articles/2011/08/07/most_gop_candidates_oppose_stem_cell_funding/?rss_id=Boston.com+%2F+Boston+Globe+–+National+News.

41. Henry J. Kaiser Family Foundation, “Summary of New Health Reform Law,” 1.

42. Hoffman, “Health Care Reform and Social Movements,” 76.

43. Ibid.

44. Ibid.

45. Ibid., 77.

46. Ibid., 78.

47. Ibid.