The Panic Virus Read online

  ALSO BY SETH MNOOKIN

  Feeding the Monster: How Money, Smarts, and Nerve

  Took a Team to the Top

  Hard News: The Scandals at The New York Times and

  Their Meaning for American Media

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  Copyright © 2011 by Seth Mnookin

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  Library of Congress Cataloging-in-Publication Data

  Mnookin, Seth.

  The panic virus : a true story of medicine, science, and fear / Seth Mnookin.

  p. cm.

  Includes bibliographical references and index.

  1. Vaccination—History. 2. Vaccination—Psychological aspects.

  3. Health behavior. 4. Mass media and culture. I. Title.

  [DNLM: 1. Vaccination—history. 2. Vaccination—psychology.

  3. Health Knowledge, Attitudes, Practice. 4. Mass Media. 5. Panic. WA 115]

  RA638.M675 2011

  614.4'7—dc22

  2010036579

  ISBN 978-1-4391-5864-7

  ISBN 978-1-4391-6567-6 (ebook)

  For Sara and Max

  “A lie will go round the world while truth is pulling its boots on.”

  —PROVERB POPULARIZED BY BAPTIST PREACHER

  CHARLES HADDON SPURGEON IN AN 1855 SERMON

  AND OFTEN ATTRIBUTED TO MARK TWAIN

  CONTENTS

  Cast of Characters

  Abbreviations

  Introduction

  PART I

  1. The Spotted Pimple of Death

  2. Milkmaid Envy and a Fear of Modernity

  3. The Polio Vaccine: From Medical Miracle to Public Health Catastrophe

  4. Fluoride Scares and Swine Flu Scandals

  5. “Vaccine Roulette”

  6. Autism’s Evolving Identities

  7. Help! There Are Fibers Growing Out of My Eyeballs!

  PART II

  8. Enter Andrew Wakefield

  9. The Lancet Paper

  10. Thimerosal and the Mystery of Minamata’s Dancing Cats

  11. The Mercury Moms

  12. The Simpsonwood Conference and the Speed of Light: A Brief History of Science

  13. The Media and Its Messages

  14. Mark Geier, Witness for Hire

  15. The Case of Michelle Cedillo

  16. Cognitive Biases and Availability Cascades

  PART III

  17. How to Turn a Lack of Evidence into Evidence of Harm

  18. A Conspiracy of Dunces

  19. Autism Speaks

  20. Katie Wright’s Accidental Manifesto

  21. Jenny McCarthy’s Mommy Instinct

  22. Medical NIMBYism and Faith-Based Metaphysics

  23. Baby Brie

  24. Casualties of a War Built on Lies

  Epilogue

  Acknowledgments

  Notes

  Bibliography

  Index

  CAST OF CHARACTERS

  Advocacy Organizations

  AutismOne: Parent-led group that believes most cases of autism are caused by vaccines

  Autism Research Institute: Early advocacy group; founded by

  Bernard Rimland in 1967

  Autism Science Foundation: Founded in 2009 by Alison Singer and Karen London to fund and promote scientific research into autism

  Autism Speaks: Largest autism charity in the United States; founded by former NBC Universal chariman Bob Wright and his wife, Suzanne, in 2005

  Cure Autism Now: Founded in 1995 to fund research into autism; merged with Autism Speaks in 2006

  Defeat Autism Now!: Offshoot of ARI founded in 1995 to promote the use of nonstandard treatments for autism

  Generation Rescue: Also known as “Jenny McCarthy’s Autism Organization”; promotes the view that vaccines cause autism and other neurological disorders

  National Alliance for Autism Research: Founded in 1994 to fund scientific research into autism; merged with Autism Speaks in 2005

  National Vaccine Information Center: Founded in 1982 by

  Barbara Loe Fisher and other parents who believe their

  children suffered brain injuries caused by the DPT vaccine

  SafeMinds: Founded in 2000 to fight against “mercury-induced neurological disorders”

  Talk About Curing Autism: Founded in California in 2000; went national in 2007

  Parents and Family Members

  Lisa Ackerman: Executive director of Talk About Curing Autism; introduced Jenny McCarthy to the autism advocacy movement

  Sallie Bernard: Mercury Mom; one of the leaders of SafeMinds; lead author of “Autism: A Novel Form of Mercury Poisoning”

  Vicky Debold: Board member of the National Vaccine Information Center; director of SafeMinds

  Barbara Loe Fisher: President of the National Vaccine Information Center

  Jane Johnson: Co-managing director of the Thoughtful House Center for Children; director of the Autism Research Institute

  Eric and Karen London: Co-founders of the National Alliance for Autism Research

  Jenny McCarthy: Actress; believes vaccines caused her son’s autism; promotes the use of gluten- and dairy-free diets

  Lyn Redwood: Mercury Mom; one of the leaders of SafeMinds; collaborated with David Kirby on Evidence of Harm

  Bernard Rimland: Father of the modern-day autism advocacy movement

  Alison Singer: Former executive vice president of Autism Speaks; co-founder of the Autism Science Foundation

  Bob and Suzanne Wright: Founders of Autism Speaks

  Katie Wright: Daughter of Bob and Suzanne Wright

  Doctors and Researchers

  Mark Geier: Frequent expert witness in Vaccine Court lawsuits

  Jay Gordon: Former pediatrician to Jenny McCarthy’s son, Evan

  Neal Halsey: Director of the Institute for Vaccine Safety at Johns Hopkins University

  Leo Kanner: Austrian psychiatrist; coined the term “autism” in a 1943 research paper

  Arthur Krigsman: Pediatrician; former colleague of Andrew Wakefield’s; treated Michelle Cedillo

  Paul Offit: Co-inventor of a rotavirus vaccine; chief of the division of Infectious Diseases and director of the Vaccine Education Center at Children’s Hospital of Philadelphia

  Bob Sears: California-based pediatrician; author of The Vaccine

  Book

  Andrew Wakefield: Lead author of a 1998 paper hypothesizing a connection between the MMR vaccine and autism

  Journalists and Writers

  Brian Deer: British investigative journalist; wrote a series of articles on Andrew Wakefield and his research into the MMR vaccine

  Richard Horton: Editor of The Lancet

  David Kirby: Author of Evidence of Harm; frequent contributor to The Huffington Post

  Lea Thompson: Reporter on the 1982 television s
pecial “Vaccine Roulette”

  The Omnibus Autism Proceeding

  Michelle Cedillo: Autistic girl whose Vaccine Court claim was an Omnibus test case

  Theresa and Michael Cedillo: Parents of Michelle Cedillo

  Sylvia Chin-Caplan: Lawyer for the Cedillo family

  George Hastings: Special Master who presided over the Cedillo trial

  Other

  Richard Barr: British personal injury lawyer; worked with Andrew Wakefield on lawsuits related to the MMR vaccine

  Mary Leitao: Founder of the Morgellons Research Foundation

  Lora Little: Early twentieth-century anti-vaccine activist

  Lorraine Pace: Founder of the West Islip Breast Cancer Coalition

  ABBREVIATIONS

  Governmental Agencies

  ACIP—Advisory Committee on Immunization Practices (U.S.)

  CBER—Center for Biologics Evaluation and Research (U.S.)

  CDC—Centers for Disease Control and Prevention (U.S.)

  EIS—Epidemic Intelligence Service (U.S.)

  EPA—Environmental Protection Agency (U.S.)

  GMC—General Medical Council (U.K.)

  FDA—Food and Drug Administration (U.S.)

  HRSA—Health Resources and Services Administration (U.S.)

  MRC—Medical Research Council (U.K.)

  NIH—National Institutes of Health (U.S.)

  NIMH—National Institute of Mental Health (U.S.)

  IOM—Institute of Medicine (U.S.)

  SSI—Statens Serum Institut (Denmark)

  WHO—World Health Organization

  Medical Terms

  ASD—autism spectrum disorder

  IBD—inflammatory bowel disease

  PDD-NOS—pervasive developmental disorder, not otherwise specified

  Organizations

  ARI—Autism Research Institute

  CAN—Cure Autism Now

  DAN!—Defeat Autism Now!

  JABS—Justice, Awareness and Basic Support (U.K.)

  NAAR—National Alliance for Autism Research

  NVIC—National Vaccine Information Center

  TACA—Talk About Curing Autism

  Professional Associations

  AAP—American Academy of Pediatrics

  AAPS—Association of American Physicians and Surgeons

  AMA—American Medical Association

  APA—American Psychiatric Association

  Publications

  DSM—Diagnostic and Statistical Manual of Mental Disorders

  JAMA—Journal of the American Medical Association

  NEJM—The New England Journal of Medicine

  Vaccines

  DPT—diphtheria-pertussis-tetanus

  Hib—Haemophilus influenzae type b

  MMR—measles-mumps-rubella

  Other

  NCVIA—National Childhood Vaccine Injury Act

  PSC—Petitioners’ Steering Committee (Omnibus Autism Proceeding)

  VAERS—Vaccine Adverse Event Reporting System

  VSD—Vaccine Safety Datalink

  THE

  PANIC

  VIRUS

  INTRODUCTION

  On April 22, 2006, Kelly Lacek looked around her dinner table and smiled: Dan, her husband of thirteen years, was there, along with the couple’s three children, Ashley, Stephen, and Matthew. Kelly’s parents had also come over: There was a father-daughter dance at the local church that evening, and Kelly and her dad were double-dating with Dan and Ashley. As the four of them were getting ready to leave, Kelly couldn’t resist needling her mother. “You’re stuck with the boys,” she said. “But don’t worry—we won’t be out too late.” She kissed Stephen goodbye, and then bent down to say good night to Matthew. He was three years old, and Kelly marveled at how quickly he was growing up: It seemed as if it was only moments ago that he’d been an infant, and now he was already being toilet-trained. (Dan and Kelly both agreed that it was adorable how proudly he announced that he had to go to the bathroom.)

  For a brief moment, Kelly says, she wondered if Matthew was okay—he seemed a little out of sorts, and earlier that afternoon, he’d complained of a sore throat—but then she figured he’d probably just tired himself out wrestling with his older brother.

  Kelly and Dan returned home that night around eight o’clock. They’d barely walked in the door when Kelly’s mother rushed over: “It’s Matthew,” she said. “He’s running a fever—and his breathing seems a little shallow.” The Laceks realized right away that something was seriously wrong. “He was just sort of hunched over,” Kelly says. “We didn’t know what to do.” Since there was no way to get in touch with Matthew’s doctor, they decided to make the ten-minute drive from their home in Monroeville, about fifteen miles east of Pittsburgh, to the Forbes Regional Campus of the Western Pennsylvania Hospital.

  When the Laceks arrived at the emergency room, the attending physician told them there was nothing to worry about. In all likelihood, he said, Matthew had a case of strep throat. Worst-case scenario, it was asthma; regardless, they’d be home in no time. Two hours later, they were feeling much less assured: Matthew’s fever was still rising, and when a doctor tried to swab his throat, he began to choke. By eleven p.m. Matthew’s temperature had risen to 104 degrees and his breathing seemed to be growing shallower by the minute.

  It was around that time that a doctor the Laceks hadn’t met before walked over. He was older—probably in his sixties, Kelly thought—and as soon as he saw Matthew, he began to suck nervously on his teeth. He turned to the Laceks: Had Matthew received all his shots? Actually, Kelly said, he hadn’t. Matthew had been born in March 2003, several years after rumors of a connection between autism and vaccines had begun to gain traction in suburban enclaves around the country. That May, Kelly’s chiropractor warned her about the dangers of vaccines. “He asked if we were going to get [Matthew] vaccinated and I said yes,” Kelly says. “And then he told me about mercury. He said, ‘There’s mercury in there.’ ” Kelly had already heard rumors that the combined measles-mumps-rubella (MMR) vaccine was dangerous, but this was something new. “He was really vocal about it causing autism. He said there was this big report over in Europe and blah blah blah. And I thought, Well, I’m surrounded by people who have autistic children. What if this happened to Matthew?” If Kelly was unconvinced, the chiropractor said, she should make Matthew’s pediatrician prove to her that the vaccines Matthew was scheduled to receive were one hundred percent safe.

  “So that’s what I did,” Kelly says. “I asked my doctor if she could give me a label that says there’s no mercury and she said, ‘No.’ She said she wouldn’t give it to me.” It was as if, Kelly says, her pediatrician was hiding something. The doctor tried to tell Kelly that she would be putting Matthew at serious risk by not immunizing him, but, Kelly says, “I don’t think I heard anything else she might have said, quite honestly. At that point I had lost faith.”

  From that day forward, Matthew didn’t receive any of his scheduled vaccinations, including one for a bacterial disease called Haemophilus influenzae type b, or Hib. Oftentimes, a Hib infection is not particularly threatening—if the germs stay in the nose and throat, it’s likely the child won’t get sick at all—but if the infection travels into the lungs or the bloodstream, it can result in hearing loss or permanent brain damage. Hib can also cause severe swelling in the throat due to a condition called epiglottitis, which, if not treated immediately, results in infected tissue slowly sealing off the victim’s windpipe until he suffocates to death. As recently as the 1970s, tens of thousands of children in America had severe Hib infections each year. Many of those suffered from bacterial meningitis, and between five hundred and one thousand died. After the Hib vaccine was put into widespread use, the disease all but disappeared in the United States: In 1980, approximately 1 in 1,000 children caught Hib; today, fewer than 1 in 100,000 do. In fact, the immunization had been so effective that out of everyone working in the Monroeville ER, the doctor who’d asked Kelly Lacek abo
ut her son’s vaccine history was the only one who had been practicing long enough to have seen an actual Hib infection in a child.

  Until that night, Kelly had never given much thought to the potential repercussions of her decision not to have Matthew vaccinated. “I must have read somewhere that after he turned three, he would have been okay for many of those diseases,” she says. “I thought he was in the clear.” She was wrong. “I have never seen a doctor panic so quickly,” she says. If, as the doctor was all but certain was the case, Matthew had been infected, then everything that had been done to him in the hospital that night—the examinations, the swabs, the breathing treatments—had served only to further inflame his throat. It wasn’t until Kelly saw her son’s X-rays that she realized just how dire the situation was: It looked as if Matthew had a thumb lodged in his throat. “I started to shake,” Kelly says. “There was just a tiny bit of airway left for him to breathe.”

  Within minutes, the entire emergency room was thrown into a frenzy. Kelly heard someone shout out, “Page Children’s!” Then she heard a second command: “Get Life Flight here right away.” Finally, a doctor pulled the Laceks aside and explained the situation to them. “If we don’t get Matthew on a helicopter [to the Children’s Hospital in Pittsburgh] right now, your son is probably going to die,” he said. “It could be within minutes.” While they were waiting, the doctor said, Kelly had to make sure Matthew remained calm. “I do not want you crying,” the doctor said. “I do not want you reacting to anything. If you are upset, Matthew will be upset, and that will make his throat close up more. If that happens he will suffocate.” As if in a daze, Kelly went and picked up her son. It wasn’t until she heard her teeth chattering that she realized she was shaking. She focused all her energy on trying to remain still.

  While Kelly was holding Matthew, Dan Lacek was conferring with the hospital staff. It had rained earlier in the evening, and now the entire area was covered in fog, which made it too dangerous to land a helicopter. Matthew was going to have to make the trip to Pittsburgh in an ambulance—but before he could be moved, he’d have to be intubated. If that didn’t work—if there was not enough room in Matthew’s throat for a breathing tube—the doctors would try to perform a tracheotomy, which involves cutting into the windpipe in an effort to form an alternate pathway for air to get into the lungs. (The procedure is not without risk: The physicist Stephen Hawking lost his speech when the nerves that control the vocal cords were damaged during an emergency tracheotomy.) Once again, it fell to Kelly to keep her son calm. Fortunately, the tube slid down Matthew’s throat. Unless it closed up so much that the tube was forced out, they’d bought themselves a few more hours.