Stomping Through A Medical Minefield (Newsweek)
October 27, 2008
From Newsweek Magazine: November 3, 2008
Paul Offit--salt-and-pepper hair, wire-rimmed glasses, Phillies fan--hardly seems like the kind of guy who'd receive a death threat. He's a father who likes to hang out with his teenage kids, a doctor who wears khakis until they're frayed. But Offit, chief of infectious diseases at Children's Hospital of Philadelphia and the nation's most outspoken advocate for childhood immunizations, is at the center of a white-hot medical controversy. He believes passionately in the safety of vaccines; his enemies, many of them parents who blame these shots for their children's autism, do not. Offit says he's been harassed in public, and received threatening letters, e-mails, and phone calls. One August morning, his wife, Bonnie, sent him a message before he spoke at a New York press conference promoting vaccination. Worried that protesters rallying outside the event might turn violent, she warned: "Be careful."
Immunologists were hardly the target of such wrath when Offit, 57, entered the field almost 30 years ago. But today, frustrations and fears about a mysterious brain disorder that strikes up to one in 150 kids have given rise to the most angry and divisive debate in medicine: do vaccines trigger autism? Offit, a vaccine inventor, says "no." His critics, who vilify him routinely on autism Web sites, say the question is still very much open. They think he's arrogant and a mouthpiece for Big Pharma. One recent post: "Offit should be prosecuted for crimes against our children." After the death threat--a man wrote, "I will hang you by your neck until you are dead"--an armed guard followed Offit to lunch during meetings at the Centers for Disease Control and Prevention.
But the scientist refuses to back down. In his new book, "Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cure," Offit takes on his critics full-force, challenging them to prove the science wrong. Fearing for his safety, he isn't doing a book tour. "People think of me as this wild-eyed maniac," Offit says. "If I sat down with them for 10 minutes, they'd see that my motivation is the same as theirs. You want what's best for kids." Asked how he ranks the intensity of the vitriol aimed at him, Offit says simply, "Abortion, doctors who perform abortions."
Nobody's firebombing pediatricians' offices, and there's no moral dilemma here about when life begins. But the overarching question--what happened to my baby?--is still impossible to answer, and the anger is real and it's deep. Some parents of children with autism tell stories with an eerily similar start: an infant who was happy and healthy until she got her shots. Then, suddenly, she lost eye contact and language. Parents' dreams for their babies are buried in sadness, their pockets are emptied to pay for therapies, their worries about their children's future haunt them even as they're trying to get through the screaming, splattered minutes of the day.
Parents of children with autism are a diverse group. Many don't believe vaccines are to blame; they'd like to see attention shifted to better services for their children. But those who think vaccines are the culprit will continue to fight a government and pharmaceutical industry they do not trust. Such concerns have spread beyond the autism community. Choice has become a critical issue; a few weeks ago, parents rallied outside the New Jersey State House, protesting the state's requirement that the flu vaccine be given to children attending day care or preschool. (The parents support legislation that would let them opt out.) A recent CDC survey found that less than 1 percent of American toddlers received no vaccines at all by 19 to 35 months. But some parents are skipping certain shots or staggering the government's recommended schedule, a move that scientists worry could lead to increased outbreaks. This summer, the CDC reported 131 cases of measles, the largest number since 1996. Many of those kids' parents, says a CDC spokesman, were concerned about vaccine safety.
Offit's book is a critical assessment of the theories that have swirled around autism, the therapies marketed to fix it, and the people--the "false prophets"--who he says have taken emotional and financial advantage of parents seeking a cure. Few scientists are willing to touch this third rail of science publicly; Offit grabs it with two hands. He documents "false promises," like secretin, a hormone derived from pigs that was said to improve symptoms. He dissects hypotheses that gave rise to fears--first, that the measles-mumps-rubella vaccine causes autism and later, that thimerosal, a mercury-containing preservative, is the culprit--then lays out the evidence against them, including more than a dozen studies showing no link. He lambastes the lawyers, doctors, media, politicians, and celebrities who he says have fueled the anxiety. The notion that vaccines cause autism, he writes, has "been clearly disproved."
It is not easy, however, to trump human experience with science. No matter how convincing the data--and pediatricians, scientists, and the CDC want the public to know that it is--doubt lingers. Autism Speaks, the nation's largest autism-advocacy group, is awarding $3.6 million for research on potential environmental factors, including the vaccine components mercury and aluminum. The group says it must "affirm the public confidence in the safety of vaccines." Lisa Jo Rudy thinks the additional science is warranted. She doesn't believe vaccines caused her 12-year-old son's autism, but she won't rule them out as a factor for other kids. Rudy, who writes about autism for About.com, says the anger directed at Offit is "an enormous overreaction." He's become a lightning rod," says Rudy, "the incarnation of badness." Still, she's not surprised that Offit's absolutism aggravates his critics. "I don't think he's walking into this like an innocent into the woods," she says.
Recently, Offit set off a flurry of angry postings when he said that a baby's immune system could handle as many as 10,000 vaccines. Then he upped the ante, saying it was probably "closer to 100,000." Offit's assessment is based on data showing the vast capacity of a child's immunological response. Parents who worry that children are getting too many shots too soon (the CDC schedule calls for about 28 immunizations against 14 diseases by age 2) were incensed. "Let's see how many of these vaccinations Offit can withstand. May I administer the 10,001st?" wrote one user on AgeofAutism.com. The outrage is triggered by Offit's approach, says Dan Olmsted, Age of Autism's editor: "He basically says the case is closed. He's very dismissive of anyone who disagrees." And critics charge that Offit, one of three patent holders of a vaccine against rotavirus--which causes severe diarrhea and kills half a million children a year worldwide--is dependent on drug companies and motivated by greed. They call him "Dr. Proffit."
Offit isn't apologizing. He acknowledges that he got a "small percentage" of the $182 million Children's Hospital of Philadelphia received when it sold its interest in future royalties for the vaccine RotaTeq. (He won't give a precise amount, but says "it's like winning the lottery.") And he has served as both a paid and unpaid member of a scientific advisory board at Merck, which makes RotaTeq. Drug companies routinely hire experts as consultants, despite concerns by some that these relationships can undermine scientific credibility. But Offit says money has never been his motivator. At the age of 5, he spent three weeks in a polio ward, where he was housed to recover from clubfoot surgery. "It caused me to see children as very vulnerable and helpless and, I think, drove me through the 25 years of the development of the rotavirus vaccine," says Offit. Frankie Milley, who started a national organization called Meningitis Angels after losing her 18-year-old son, Ryan, to the disease, says Offit readily hands out his number to parents concerned about vaccine safety. "He truly hurts for children who are suffering or who have died," she says.
Scientific studies cannot prove a negative, so researchers must be cautious in the language they use to describe results. Because Offit refuses to garble the message, fellow scientists say, he is the perfect target. "He happens to be blessed with the gift of gab, and he's been willing to step up and be in the battle," says Dr. Edgar Marcuse, a pediatrician at Seattle Children's. "It requires a kind of offense and aggressiveness that's absolutely necessary to set the record straight." Dr. Peter Hotez, a professor and vaccine researcher at George Washington University, says government health officials should take a bolder stand in reassuring the public. Hotez feels as strongly as Offit does about the science (saying vaccines cause autism, he says, "is like saying the world is flat"), but, like other busy scientists, he's less willing to enter the fray. "Here's someone who has created an invention that saves hundreds of lives every day," says Hotez, whose daughter, 15, has autism, "and he's vilified as someone who hates children. It's just so unfair."
Bonnie Offit, a pediatrician, tours the autism Web sites late at night after her husband goes to sleep. "He's not the man they've created an enemy out of," she says. She wishes his critics knew him the way she does--a gentle, sweet, salt-of-the-earth guy. "What I've learned in all this is to stick to the truth, talk about the science," says Paul Offit. "It's not about me, it's about the data." Above all else, it's about doing right by the children.
