by John Donvan
pounding on the lectern: The scene was vividly recalled by Independent journalist Jeremy Laurance, in interview with authors, and in Jeremy Laurance, “I Was There When Wakefield Dropped His Bombshell,” Independent, January 29, 2010.
“It’s a moral issue for me”: Jeremy Laurance, “Health: Not Immune to How Research Can Hurt; Jeremy Laurance Talks to the Man at the Centre of the Controversy over the MMR Vaccine,” Independent, March 3, 1998.
storied history of vaccine skepticism: In 1885, for example, 100,000 people marched against a mandatory program of vaccination for smallpox in the city of Leicester.
they were a fringe: A systematic survey published in 2007 discovered a scattering of small “vaccine skeptical” organizations, with membership enrollments as small as 60 people, and none larger than 2,000. See P. Hobson-West, “ ‘Trusting Blindly Can Be the Biggest Risk of All’: Organised Resistance to Childhood Vaccination in the UK,” Sociology of Health and Illness 29, no. 2 (2007): 198–215.
immunization rates above 90 percent: See Figure 2 in Dan Anderberg, Arnaud Chevaliera, and Jonathan Wadsworth, “Anatomy of a Health Scare: Education, Income and the MMR Controversy in the UK,” Journal of Health Economics 30, no. 3 (2011): 520.
Britain’s program was not mandatory: G. L. Freed, “Vaccine Policies Across the Pond: Looking at the U.K. And U.S. Systems,” Health Affairs 24, no. 3 (2005): 755–57.
most ardent supporters acknowledge: See, for example, the statement “Vaccines can and do cause harm” in G. A. Poland and R. M. Jacobson, “Understanding Those Who Do Not Understand: A Brief Review of the Anti-Vaccine Movement,” Vaccine 19, no. 17–19 (2001): 2440–45.
some adverse effects will occur: An excellent discussion of complex practicalities and politics of this cost-benefit balance can be found in Arthur Allen, Vaccine (New York: W. W. Norton & Company, 2008).
ever really listened to them: More than a decade later, the families still made this assertion. See, for example, Fiona Macrae and David Wilkes, “Damning Verdict on MMR Doctor: Anger as GMC Attacks ‘Callous Disregard’ for Sick Children,” Daily Mail, January 29, 2010.
“frankly alarmed by suggestions”: Sarah Boseley, “Jab Warning ‘Wrong; WHO Chief Attacks Doctors over Claim of Vaccine Link with Autism,” Guardian, March 12, 1998.
provided numbers as well as an animated graphic: ITN report, Independent Television News, “MMR Vaccine: Autism Link Story,” February 26, 1998, reference number BSP270298055, www.itn.source.com.
“advising parents against”: Sarah Boseley, “MMR Vaccination Fears ‘Not Justified’; No Evidence of Link to Autism or Bowel Disease, Scientists Say,” Guardian, March 25, 1998.
Tony Blair stumbled: Sarah Womack, “Blair Silent over Leo’s MMR Jab,” Telegraph, December 21, 2001.
scores of them: See, for example, A. J. Wakefield, “Enterocolitis in Children with Developmental Disorders,” American Journal of Gastroenterology 95, no. 9 (2000): 2285–95.
Wakefield resigned his position: Lorraine Fraiser, “Anti-MMR Doctor Is Forced Out,” Telegraph, December 2, 2001.
he told The Lancet: Sarah Ramsay, “Controversial MMR-Autism Investigator Resigns from Research Post,” Lancet 358, no. 9297 (December 8, 2001): 1972.
“I’m not going to whinge”: Lucy Johnston, “US Research on Controversial Vaccine May Vindicate Consultant Who Was Forced to Resign; New Tests Back Expert Who Sounded Alarm over Triple Jab for Children,” Sunday Express, December 9, 2001.
fallen to 79 percent: Maxine Frith, “Measles Alert in MMR Crisis,” Evening Standard, July 3, 2002.
“a question mark still hangs”: Linda Steel, “Parents: ‘It Is Not About the Science. It’s About Belief’: Andrew Wakefield—the Doctor Who First Linked MMR and Autism—Has Resigned. But Does That Mean He Was Wrong About the Vaccine?” Guardian, December 5, 2001.
made into a feature film: Hear the Silence, directed by Tim Fywell, Channel 5 (UK), original airdate December 9, 2002.
chief witness was Andrew Wakefield: Wakefield’s testimony in “Autism: Present Challenges, Future Needs—Why the Increased Rates?” Hearing Before the Committee on Government Reform, House of Representatives, April 6, 2000.
at yet another vaccine hearing: “Mercury in Medicine—Are We Taking Unnecessary Risks?” Hearing Before the Committee on Government Reform, House of Representatives, July 18, 2000.
Since the 1930s, mercury had been added: These accounts of the history of the development of thimerosal can be found in the July 18, 2000, committee report cited above, and in Paul Offit, Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure (New York: Columbia University Press, 2008), 96–97.
more than thirty separate vaccines: Anne M. Hurley, Mina Tadrous, and Elizabeth S. Miller. “Thimerosal-Containing Vaccines and Autism: A Review of Recent Epidemiologic Studies,” Journal of Pediatric Pharmacology and Therapeutics 15, no. 3 (July–September 2010): 173.
warrant an alarm call: The US Food and Drug Administration makes this point, in publishing and updating guidelines on safe levels of mercury in food consumed. See, for example, the pamphlet “Mercury in Fish: Cause for Concern?” 1995, Food and Drug Administration, downloadable at http://www.fda.gov/OHRMS/DOCKETS/ac/02/briefing/3872_Advisory%207.pdf.
60 micrograms of methylmercury: Calculation based on mean amount of methylmercury—0.035 ppm—reported in canned albacore tuna by the US Food and Drug Administration for the years 1990–2010, in the online publication “Mercury Levels in Commercial Fish and Shellfish (1990–2010),” www.fda.gov.
warnings about tuna: See, for example: “Fish: What Pregnant Women and Parents Should Know,” draft updated June 2014, FDA and EPA, http://www.fda.gov/Food/FoodborneIllnessContaminants/Metals/ucm393070.htm.
several thousand Iraqis: F. Bakir et al., “Methylmercury Poisoning in Iraq,” Science 181, no. 4096 (July 1973): 230–41.
0.1 micrograms per kilogram: “How People Are Exposed to Mercury,” United States Environmental Protection Agency online circular, December 29, 2014, http://www.epa.gov/mercury/exposure.htm.
25 micrograms of mercury: “Uproar over a Little-Known Preservative, Thimerosal, Jostles U.S. Hepatitis B Vaccination Policy,” Hepatitis Control Report, Summer 1999, 4:2. http://www.hepatitiscontrolreport.com/articles.html.
as the mercury found in food: The methylmercury found in the food chain is molecularly different from the ethylmercury produced when thimerosal is metabolized by the body. A Centers for Disease Control online guide explains: “Ethylmercury is formed when the body breaks down thimerosal. The body uses ethylmercury differently than methylmercury; ethylmercury is broken down and clears out of the blood more quickly.” http://www.cdc.gov/vaccinesafety/Concerns/thimerosal/thimerosal_faqs.html#b.
began to tally up: Hepatitis Control Report, op. cit.
soon, more shots were added: Ibid.
187 micrograms: Ibid.
immunization experts decided: An account of the scientists’ reasoning and actions can be found in Arthur Allen, “The Not-So-Crackpot Autism Theory,” New York Times Magazine, November 10, 2002.
released coordinated statements: Statement by Public Health Service carried in “Notice to Readers: Thimerosal in Vaccines: A Joint Statement of the American Academy of Pediatrics and the Public Health Service,” Morbidity and Mortality Weekly Report, Centers for Disease Control, July 9, 1999, 48(26): 563–65.
remarks by the academy’s president: “Press Release: AAP Address FDA Review of Vaccines,” July 14, 1999. Accessed at: http://www.aap.org/advocacy/archives/julvacc.htm.
Lyn Redwood might never have suspected: Author interview with Lyn Redwood. A detailed account of Redwood’s journey can also be found as a main story line in David Kirby, Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy (New York: St. Martin’s Press, 2005).
“My worst fears”: Redwood testimony before House Government Reform Committee Hear
ing, July 18, 2000.
demanding faster action: “Cure Autism Now Calls for Removal of Mercury-Based Preservative in Children’s Vaccinations,” PR Newswire, July 17, 2001.
nonprofit called SafeMinds: The name is an acronym for “Sensible Action for Ending Mercury-Induced Neurological Disorders.”
the full range of alternative therapies: Such therapies were and remain widely advertised online, especially on sites that promote the vaccine theory of autism. A critical but accessible assessment of these approaches can be found in Trine Tsouderos and Patricia Callahan, “Risky Alternative Therapies for Autism Have Little Basis in Science,” Chicago Tribune, November 22, 2009.
injecting boys with Lupron: A blogger/investigator’s exhaustive and critical report on this practice can be found in Kathleen Seidel, “Autism and Lupron: Playing with Fire,” Neurodiversity.com, February 19, 2006, http://web.archive.org/web/20120204153600/http://neurodiversity.com/weblog/article/83/autism-testosterone-lupron-playing-with-fire.
state of the available research: The background and findings of the IOM review can be found in Immunization Safety Review: Thimerosal-Containing Vaccines and Neurodevelopmental Disorders (Washington, DC: National Academy Press, 2001).
Mercury Moms never doubted: Lyn Redwood interview. In addition, Kirby’s Evidence of Harm depicts multiple scenes where parents are afforded direct access to top policymakers.
boasted in an online posting: The account of this confrontation appears in Kirby, Evidence of Harm, 104.
“to hide the risks”: Robert Kennedy Jr., “Deadly Immunity,” Rolling Stone, July 14, 2005, and Salon.com, June 16, 2005, http://www.rollingstone.com/politics/news/deadly-immunity-20110209.
“two sides to every good story”: Kirby, Evidence of Harm, xii.
“hellish, lost world”: Ibid.
“Evidence of Harm” Yahoo! group: The “Evidence of Harm” group subsequently evolved into one called “Environment of Harm,” with a restricted membership: https://groups.yahoo.com/neo/groups/EOHarm/info.
optioned for a Hollywood movie: Per EvidenceOfHarm.com (now defunct), https://web.archive.org/web/20060815043144/http://www.evidenceofharm.com/.
Combating Autism Act: The text and legislative history of the law can be found at https://www.congress.gov/bill/109th-congress/senate-bill/843.
glittered with the names of experts: “HHS Secretary Leavitt Announces Members of the New Interagency Autism Coordinating Committee,” News Release, US Department of Health and Human Services, November 27, 2007.
CHAPTER 41: AUTISM SPEAKS
the NBC network devoted: An NBC press release stated: “ ‘Autism: The Hidden Epidemic?’ is part of a weeklong series of special autism coverage airing across the various networks of NBC News during the week of February 21. ‘Today,’ ‘Nightly News with Brian Williams,’ CNBC, MSNBC, Telemundo and MSNBC.com will all provide extensive information and reports on the disorder.” Source: PRNewswire, “NBC 10 to Air One-Hour Special ‘Autism: The Hidden Epidemic?’ ” February 16, 2005.
some 40 million people: Autism Speaks Website, “About Us: 2005 Highlights,” www.autismspeaks.org/about-us/annual-reports/2005-highlights.
“in most cases, exhausted and broke”: Video of the Today show appearance, titled “Bob Wright: I Want My Grandson Back,” available at http://www.today.com/id/7024923/ns/today/t/bob-wright-i-want-my-grandson-back/#.VZ0la_kgkqM.
The doctors had diagnosed Christian: Details of the Wright family’s experiences of autism and the founding of Autism Speaks are from authors’ interview with Bob and Suzanne Wright.
she had emailed Bob and Suzanne: Details of Singer’s experiences and work with Autism Speaks are from authors’ interview with Alison Singer.
Photoshopped version: Titled “Pass the Maalox: An AoA Thanksgiving Nightmare,” the image was taken down from the site after prompting criticism. The incident, which dates to late 2009, was chosen by the authors to illustrate an antagonism in the discourse that was well under way in 2005, and persists to the present day.
to have written favorably: Amy Wallace, “An Epidemic of Fear: How Panicked Parents Skipping Shots Endanger Us All,” Wired, October 19, 2009.
offered six-figure salaries: Per Autism Speaks filing of Internal Revenue Service Form 990, for 2006 and 2007.
Marcus donated $25 million: “About Us,” Autism Speaks, www.autismspeaks.org/about-us.
concert that featured Jerry Seinfeld: Lawrence Van Gelder, “Arts, Briefly,” New York Times, August 5, 2005.
sounding the epidemic alarm: See, for example, Autism Speaks’s later press release, “Autism Speaks Demands an Urgent, New Response to the Autism Epidemic as CDC Updates Prevalence Estimates,” March 29, 2012.
Bob and Suzanne seemed omnipresent: For much of the next decade, the Wrights traveled the United States and the world to promote Autism Speaks, speaking at conferences, and appearing on magazine covers and on radio and television.
5 million Starbucks cups: Autism Speaks Annual Report, 2007, and Annual Report “Highlights,” at https://www.autismspeaks.org/about-us/annual-reports/2007-highlights.
Under Bob Wright’s leadership: Marc Gunther and Henry Goldblatt, “How GE Made NBC No. 1 When He Became NBC’S CEO,” Fortune, February 3, 1997.
borrowed from that approach: Giacinta Pace, “Philanthropist Wages Fight to Cure Autism, Suzanne Wright’s Foundation Raises Money to Fund Research on Disorder,” NBC News, November 12, 2009, www.nbcnews.com/id/33868343/ns/us_news-giving/t/philanthropist-wages-fight-cure-autism/#.VZ1HY_kgkqM.
Jon Shestack was dead set against: Shestack’s recollections of CAN relationship with Autism Speaks are from authors’ interview with Jon Shestack.
the Londons did not see it that way: The Londons’ recollections of NAAR’s relationship with Autism Speaks are from authors’ interview with Eric and Karen London.
“the consolidation of the two charities”: Autism Speaks, “Autism Speaks and the National Alliance for Autism Research (NAAR) Announce Plans to Combine Operations,” press release, November 30, 2005, https://www.autismspeaks.org/about-us/press-releases/autism-speaks-and-national-alliance-autism-research-naar-announce-plans-comb.
Shestack was given a heads-up: Singer and Shestack interviews.
announced the merger of Cure Autism Now: Autism Speaks, “Autism Speaks and the National Alliance for Autism Research.”
surpassed anything a private charity: Grant statistics from Autism Speaks annual reports available at autismspeaks.org.
CHAPTER 42: A STORY UNRAVELS
Written by a pair of American vaccine researchers: Robert T. Chen and Frank DeStefano, “Vaccine Adverse Events: Causal or Coincidental?” Lancet 351 (1998): 611–12.
researcher named Brent Taylor: Brent Taylor et al., “Autism and Measles, Mumps, and Rubella Vaccine: No Epidemiological Evidence for a Causal Association,” Lancet 353 (1999): 2026–29.
a study out of California: L. Dales, S. J. Hammer, and N. J. Smith, “Time Trends in Autism and in MMR Immunization Coverage in California,” Journal of the American Medical Association 285, no. 9 (2001): 1183–85.
Brian Deer was an investigative reporter: A significant portion of Deer’s work can be found online at briandeer.com.
thought to ask Deer: Author interview with Brian Deer. Our account of Deer’s legwork also draws upon Deer’s own detailed account submitted for legal purposes when he was named a defendant in a libel suit, ultimately dismissed, brought by Andrew Wakefield. Titled “Amended Declaration of Brian Deer in Support of Defendants’ Anti-Slapp Motion to Dismiss,” it can be found online at http://briandeer.com/solved/slapp-amended-declaration.pdf.
“I believe that this paper”: Brian Deer, “Revealed: MMR Research Scandal,” Sunday Times, February 22, 2004.
they publicly retracted: Simon H. Murch et al., �
�Retraction of an Interpretation,” Lancet 363, no. 9411 (2004): 750.
The Lancet’s editor declared: Quoted by Brian Deer, “MMR: The Truth Behind the Crisis,” Sunday Times, February 22, 2004.
“mixing spin and science”: Fiona Macrae and David Wilkes, “Damning Verdict on MMR Doctor: Anger as GMC Attacks ‘Callous Disregard’ for Sick Children,” Daily Mail, January 29, 2010.
“matter of urgency”: David Hughes and Jenny Hope, “MMR: The Betrayal of These Tragic Parents,” Daily Mail, February 24, 2004.
“His credibility lies in ruins”: Editorial Board, “Doctor’s Secret,” Sun, February 23, 2004.
“increasingly isolated man”: Jeremy Laurance, “A Doctor, the Distinguished Journal, and a Scare That Need Never Have Happened,” Independent on Sunday, February 22, 2004.
“urgent need now is for more real study”: “This Carefully Orchestrated Campaign Must Not Be Allowed to Stifle Real Debate on MMR,” Independent, February 24, 2004.
“until the mysteries of autism are fully explained”: “Doctor’s Secret.”
“He is not an accountant”: “Another New Twist in MMR Controversy,” Bath Chronicle, February 24, 2004.
“There has been talk of an inquiry”: Liam Mcdougall, “MMR: Wakefield Welcomes Probe,” Sunday Herald, February 22, 2004.
critics faulted the article: See, for example, Seth Mnookin, The Panic Virus: The True Story Behind the Vaccine-Autism Controversy (New York: Simon & Schuster, 2011).
Salon issued a full retraction: Salon’s explanation for retracting can be found at www.salon.com/2011/01/16/dangerous_immunity/.
Senate probe into the alleged plot: US Senate Committee on Health, Education, Labor and Pensions, “Thimerosal and Autism Spectrum Disorders: Alleged Misconduct by Government Agencies and Private Entities,” Executive Summary, September 2007.