Probably the best example of the casual conspiracy theorist can be found after the decision by the VICP special masters that thimerosal in vaccines didn’t cause autism. Rebecca Estepp, a mother of a child with autism, said, “I was disappointed but not surprised. Vaccine court is a system where government attorneys defend a government program using government-funded science decided by government judges. I don’t think these children had much of a chance.” Estepp’s notion of a government conspiring to deny her child compensation through the VICP wasn’t supported by the facts. First: most of the research that failed to show that thimerosal caused autism was funded by academia, not the U.S. government. Second: the “government judges” who had denied her claim that vaccines caused autism had awarded almost $2 billion to petitioners since 1989 for other claims, primarily in cases where the evidence wasn’t clear. For thimerosal, the evidence was abundantly clear. But what was most striking about Estepp’s comments was that virtually every major news organization, including the New York Times, carried them unchallenged.
Conspiracy theories proliferate because of one shared characteristic between vaccine makers and the government: lack of a definable face. Companies are portrayed as caring only about money to be made, not lives to be saved. The media never tell, and the public never hears, stories of people at pharmaceutical companies who are directly involved in vaccine research and development.
Penny Heaton is a pediatrician who trained in infectious diseases at the University of Louisville. Then she joined the Epidemiology Intelligence Service at the CDC investigating diarrheal diseases in Africa. Between 1997 and 1999, Heaton, working in Africa, saw children die from overwhelming dehydration, mostly caused by ro-tavirus. In 1999, she decided to do something about it, joining Merck to lead its rotavirus vaccine program. It was a daunting task. At the end of a pre-licensure study that took four years to complete, involved eleven countries, included seventy thousand children, and cost $350 million, Heaton called together two hundred people at her company. She began by showing a map of the world. “This is what the world looks like now,” she said, pointing to hundreds of small black dots concentrated in Asia, Africa, and Latin America. “Each of these dots represents a thousand deaths a year from rotavirus.” Then Heaton showed a map without any black dots. “Now,” she said, pointing to the clean map, “we have the technology in hand to eliminate deaths from this disease.” Then she wept. She stood in front of two hundred people with her head down and her shoulders shaking, thinking of those children in Africa. This isn’t an image that anyone has of a pharmaceutical company. And it’s unlikely that anyone ever will. Because no matter how much companies make people like Penny Heaton available to the press and the public, no matter how much they try to provide a compassionate face to their industry, one belief will remain: vaccine manufacture is an enterprise that makes money and makes money only. Heaton later helped to provide Merck’s vaccine to several African countries.
Drs. Penny Heaton (center of photo), Kathy Neuzil, and Abraham Victor Obeng Hodgson in Northern Ghana during rotavirus vaccine field trials. (Courtesy of Penny Heaton.)
If we are to get past the constant barrage of misinformation based on mistrust, we have to set aside our cynicism about those who test, license, recommend, produce, and promote vaccines. Only then will we survive this detour—a detour that has caused far too many children to suffer needlessly.
EPILOGUE
We must not be enemies. Though passion may have strained it must not break our bonds of affection . . . when again touched, as surely they will be, by the better angels of our nature.
—ABRAHAM LINCOLN
Maybe the tide will turn only when parents start to speak up. Remarkably, that’s happening.
On December 19, 2008, a program titled “Ruining It for the Rest of Us” aired on National Public Radio. It centered on the measles epidemic in San Diego started by the seven-year-old unvaccinated boy who caught the disease in Switzerland. When he got home, after walking among a group of football fans at the airport on their way to the Pro Bowl in Hawaii, he went to a Whole Foods Market, Trader Joe’s, Chuck E. Cheese, a swim school for babies, his elementary school, and his pediatrician’s office. During his travels as many as 980 people were exposed to measles. Once alerted to the situation, the health department resorted to quarantine. Anyone judged to have had direct contact with the boy—or to have shared a space that he had occupied in the previous two hours—was asked to stay home for twenty-one days. The boy was placed in protective isolation on a military base. When the outbreak was over, twelve children had contracted measles and sixty had been quarantined.
“Ruining It for the Rest of Us” contained voices typically found in an anti-vaccine story:
There was an anti-vaccine mother, Sybil Carlson, who, like the mother of the seven-year-old boy who had started the outbreak, had chosen not to vaccinate her children. She said she no longer trusted doctors and the heavy-handed manner in which they tried to force her to vaccinate.
There was the moderator, Susan Burton, who, in reference to vaccine ingredients, said, “I’m pretty sympathetic to this stuff. When Sybil says that aluminum, a vaccine additive, is a known neuro-toxin, I’m right there with her.” (The measles vaccine doesn’t contain aluminum.)
And there was Robert Sears: “There’s a great quote in Star Trek where Spock says, ‘The needs of the many outweigh the needs of the few or the one.’ There’s no better way that you can look at that than with vaccines. Spock was saying this in a movie while he was dying to save the Starship Enterprise. And you know, would Spock’s mom have said he made a good decision because she had to lose her son over it? It’s a big decision and I think parents are ultimately going to do what they think is best for the one instead of what they view as best for the many.”
But unlike most programs on vaccines, “Ruining It for the Rest of Us” featured parents who were angry that they had to suffer the choices of others. For example, there was Hillary Chambers, whose daughter, Finley, had been quarantined for three weeks. Burton asked her how she had dealt with the quarantine. “It was so sudden I was scared,” she said. “What was I going to do for the next three weeks? My husband and I both work.” (Before vaccines, mothers typically stayed home with their children during quarantines. Vaccines made it easier for women to enter the workplace.) Then Burton asked Hillary about her reaction to the outbreak. “I was really angry,” she said. “It impacted families financially, emotionally, on so many different levels. So I was mad. And wanted to know how this happened.” Finally, Burton asked whether Hillary sympathized with parents’ decisions not to vaccinate. “I understand that it’s scary and that getting vaccinated is a leap of faith,” she said. “The battle starts when one person’s choices affect other people. And that’s not being a responsible member of this community.”
Another parent, Meagan Campbell, was also interviewed. Unlike Hillary, Meagan hadn’t been inconvenienced by quarantine; she’d been forced to watch her son suffer and almost die from the disease. While waiting in his pediatrician’s office, Meagan’s son was exposed to the boy who had contracted measles in Switzerland. Because he was only ten months old, he was too young to have received the MMR vaccine. Meagan described her ordeal: “The rash started getting worse and spreading down over his body. On Saturday my parents came down from Los Angeles and took one look at him and said your kid has the measles—because they were from a generation that knows what it looks like. At that point my son had the full rash all the way to his toes and we would never put him down, even for a nap. I thought as long as someone was holding him then we knew his heart was beating. There were moments when I didn’t think he was going to make it because the fever just wasn’t letting up—106 degree fever and this rash that made my son look like an alien almost. And I wondered when it was over whether he was going to be the same boy that he was before. I was a mom that has probably taken fifty pictures of him every day since the day he was born. But there are not pictures of this until he w
as finally better because it wasn’t my son and I never want to remember him looking that way.”
Burton asked Meagan about her reaction to the outbreak. “I just wondered [about] this family that had brought this outbreak into San Diego,” she said. “What were they thinking? Did they feel for us at all? Did they feel bad about it? I have very close friends who don’t vaccinate their children. And it’s just something that we can’t talk about. We get too angry and we can barely speak. I feel like if I were to engage in the conversation we might not be friends anymore.”
Burton asked, “Do you think it should be a choice—that people should be able to opt out of the measles vaccine?” Meagan thought before answering. “Yes,” she replied, “but they have to live on an island: their own little infectious diseases island. Don’t go to the same doctors as the rest of us. Don’t go to the same schools. Don’t go to the same stores. Live on an island somewhere if that’s the choice you want to make.”
Celina Yarkin and family on their Vashon Island farm, 2010. (Courtesy of Celina Yarkin.)
Hillary Chambers and Meagan Campbell aren’t the only parents speaking out.
Celina Yarkin lives on Vashon Island, Washington, a community with dreadfully low immunization rates. She’s the mother of three children: Adrianna, age nine; Eleanor, six; and Madeline, four.
Yarkin’s story is similar to most on the island. Born and raised in Seattle, she attended Antioch and then Evergreen College, where she studied visual arts. In 1996 she joined the Peace Corps, teaching English in Guinea-Bissau, Africa, before returning to live on a collective in Albuquerque, New Mexico. In 2001, when her eldest daughter was nine months old, she moved to Vashon Island, where she farms. “We’re a market farm,” she says, “so we grow 20-30 different kinds of vegetables [and then] bring them to the farmers’ market. We do two markets a week.”
Soon after arriving, Yarkin knew that something was different about Vashon Island. “When we moved here the BBC and the Boston public broadcasting channel were doing a production on vaccines,” she recalled. “They came to Vashon Island to show a community that had really high unvaccinated rates. I ended up being in that film because we had goats and a goat trailer. So they used me as a shot of ... a typical parent. I said to them that I’d like to talk about my views on vaccines because I think they’re really important. But they didn’t want to talk to me. They wanted to talk to people who were really resistant.”
Yarkin was concerned about the large number of unvaccinated children in her community. “Most of my concern is that we’re vulnerable to outbreaks. It’s like when you go to other countries and you can see things that are broken and you say ‘Oh gosh, if we could just do it differently.’ This is something in my community that I think is dysfunctional. It concerns the safety of our kids. I thought this is something I’m going to take a stand on; I want to talk about it; I want to work through it with people—to try and punch back at all of that information on the Internet that everyone’s getting about autism and vaccines and the dangers.”
To start, Yarkin wanted to know exactly how many children in her community were unimmunized. So she made a few phone calls. In February 2009, Yarkin headed a meeting on the island that included Walter Orenstein; Zachary Miller, an infectious diseases expert from Seattle; public health officials from the state and county; and the principals from both the local high school and elementary school: “The result of the meeting was that we didn’t know what the vaccination rates on the island were; but we needed to figure that out. It’s just amazing that people were so ready for someone to step forward from the community.” Yarkin also traded e-mails with William Foege, who designed the strategy that eventually eliminated smallpox from the world. Foege is a resident of Vashon Island, too.
After months of reviewing charts from physicians’ offices and public health clinics, Yarkin had an answer. Pertussis and chickenpox immunization rates on the island were well below those necessary to prevent outbreaks. Worse: the estimates were probably optimistic. “The numbers we have are skewed in favor of vaccines because those who go to alternative practitioners or are homeschoolers aren’t counted,” she said.
To increase immunization rates, Yarkin is constructing displays to educate parents at elementary schools and health clinics. “And when the displays go up,” she says, “I will get the local newspaper to draw people’s attention to it.” She knows it isn’t going to be easy. “There’s like a parenting code. Do you tell other parents that you disagree with what they’re doing? No. You don’t interfere with other families’ decisions about how they’re raising their kids.” But Yarkin sees herself in those who are choosing not to vaccinate. “I was one of those moms who questioned vaccines based on the autism scare, [which] showed me my vulnerabilities to unsound scientific information. Going forward, I hope to be less vulnerable.” And to make others less vulnerable. “I took this on because I believe people want good information. And they want to do the right thing for their families and their community. They’ll change their behavior if they believe the information is sound.”
Yarkin knows that her efforts could alienate friends. “I’m okay with being in a controversy. It’s okay with me if people disagree and back away from me. It’s something that I’ve had to really work through. But I don’t think I’ll lose any real friends over it. And I won’t be insulted or hurt if people don’t do what I want them to do.” In the end, she remains optimistic: “I feel I have a chance to really change the course of events.”
Yarkin’s outspokenness is fueled by the fear of what might happen if children in her community remain unvaccinated. More typically, parent activism is fueled by events that have already affected their children. Such is the case with the mother of Julieanna Flint of Waconia, Minnesota.
In January 2008, when Julieanna was fifteen months old, she had an episode of vomiting and slight fever. Her mother, Brendalee, thought little of it. The next morning Julieanna’s temperature rose. So Brendalee took her daughter to Heidi Wuerger, her family doctor. “It sounds like flu,” she was told. “Give her Tylenol.” Brendalee took her daughter home, gave her plenty of liquids, and washed her with a cool, damp washcloth. But the fever didn’t go away. As the day wore on, Julieanna refused to eat or drink.
The next day, she woke up screaming with a temperature of 104 degrees. “She couldn’t say ‘Help me,’ but her eyes were begging me to do something,” recalled Brendalee, who rushed her to the emergency room at Ridgeview Medical Center, where doctors performed a spinal tap. But instead of the fluid being clear (as it should be), it was cloudy; and instead of containing no white blood cells (cells the body uses to fight infection), it contained 145,000. “Your daughter is seriously ill,” Dr. Wuerger told Brendalee. “We need to transport her to Children’s [Hospital in Minneapolis], now!”
At Children’s Hospital, doctors gave Julieanna antibiotics to treat her bacterial meningitis. Her fever decreased. But the next day Julieanna had a seizure, the first of many. That same day, the cause of her meningitis was revealed: Hib. At that point, a Hib vaccine had been available for twenty years, and Julieanna had received every dose of it. Yet she still suffered the disease. Later, doctors figured out why: Julieanna had an inability to make antibodies. So, even though she’d gotten the vaccine, she’d never developed an immune response to it.
Julieanna worsened. During an MRI scan, doctors found a massive collection of pus surrounding her brain. “We’re doing everything we can to save your daughter’s life,” a doctor told Brendalee. “I still remember walking her to the surgery room and giving her to the doctor,” recalled Brendalee. “I didn’t know if I would see her again.” Brendalee called a priest to administer last rites. “Through this holy anointing may the Lord in his love and mercy help you with the grace of the Holy Spirit,” said the priest, marking Julieanna’s forehead with oil in the shape of a cross. “May the Lord who frees you from sin save you and raise you up.”
Julieanna slowly began to recover. As a result of her mening
itis, she had to relearn how to swallow, crawl, walk, and talk. “It was like having a newborn again,” recalled Flint. “I would rub her throat for swallowing and rub her cheeks for chewing. She couldn’t crawl. She could scream and that was about it.” But she was alive. Although Brendalee didn’t know it, the percentage of children in Minnesota whose parents had refused to give them Hib vaccine had increased sixfold during the previous few years. Because Julieanna couldn’t make antibodies, she was particularly vulnerable.
Brendalee and Julieanna Flint, December 16, 2009. (Courtesy of Andy King.)
In April 2009, Brendalee and Julieanna Flint traveled to Washington, D.C., to speak to congressional staffers about the importance of vaccines. “Parents need to understand that when they choose not to vaccinate, they are making a decision for other people’s children as well,” said Brendalee. “Someone else chose Julieanna’s path. It doesn’t seem fair that someone like Jenny McCarthy can reach so many people while my little girl has no voice.”
Deadly Choices: How the Anti-Vaccine Movement Threatens Us All Page 23