The story of Cindy Goldenberg and her dimpled son Garrett was enough to give any channel-surfing parent a jolt. As the Laguna Beach mom told it to talk show hosts, she had done what any good parent would--found the best pediatrician and ferried her son in, on schedule, for his shots.
But, beginning at about 13 months, her “perfect baby” quit looking people in the eye. He withdrew from hugs, grimaced at mild sounds, then simply stopped talking. After visiting 55 medical experts, Goldenberg learned he was descending into autism, but no one could say why.
On her own, she decided it was his rubella shot--that seemingly innocuous rite of passage--that pushed her happy child into an impenetrable shell. Now, she said, warning of its dangers is her “mission from God.”
Charismatic and camera-friendly, Goldenberg has taken to the lecture and talk show circuit, reaching millions of viewers on programs from “Susan Powter” to “Caryl and Marilyn.”
She is among hundreds of parents and skeptics across the country venting against vaccines. Although active since the early 1980s, these critics are no longer just chatting over the backyard fence. They are broadening their reach through public forums, TV, magazines and at least two dozen books. And they are swapping news, views and suspicions over the Internet.
Drawing on the persuasive power of personal tragedy, this scrappy movement transmits a scary message.
It especially spooks many public health officials, who fear its contagion much as they would a deadly disease. Indeed, if the ideas catch on, some warn, deadly disease will be the inevitable consequence.
Others--doctors and researchers among them--see the debate as a natural offshoot of health consumerism, opening up a domain too often controlled by the scientific community.
“It’s good to bring out the truth, even if it’s negative,” said Malibu pediatrician Jay Gordon. “People will have more faith . . . that we’re being honest with them. I believe the facts are on the side of people who support vaccinations, but I think it’s a little closer call than many doctors would have you believe.”
Having learned the ropes as consumer activists, vaccine critics are now a force to be reckoned with. Or at least, they have become hard to ignore. They have joined the folks in lab coats on national committees, been invited to scientific meetings and crowded the hallways of the U.S. Centers for Disease Control and Prevention, accompanied by children in wheelchairs.
They blast the medical establishment, the government and drug companies for bamboozling consumers into believing vaccines are safe.
“It’s the same old garbage,” lamented Dr. James Cherry, chief of pediatric infectious diseases at UCLA, of complaints by critics, who he claims “make [vaccines] responsible for everything from autism to stuttering.”
At its core, the vaccine controversy is about the meaning of risk--that troublesome topic that scientists cast in statistics but the public often takes very personally.
“This is the thing,” said Cherry, “these [vaccine critics] don’t understand public health at all. It’s all about their child.”
The National Vaccine Information Center, founded by vaccine critics in the early 1980s, fires back with a slogan: “When it happens to you or your child, the risks are 100%.”
Benefits Versus Risks
To Cherry and other researchers, the calculation is simple: Benefits of vaccines far outweigh risks. Inoculations in this century have wiped out smallpox, nearly eliminated polio and vastly reduced cases of measles, whooping cough, diphtheria and tetanus. They have saved millions of lives.
These vaccine advocates condemn critics’ arguments as unscientific, inflammatory and potentially subversive to a practice that is one of modern medicine’s greatest achievements.
“To have a medical intervention as effective as vaccination in preventing disease and not use it would be unconscionable,” a CDC statement to doctors says.
Consider measles. The risk of dying from the disease is one in 3,000, according to the CDC. The risk of brain damage or a severe allergic reaction from the measles, mumps and rubella vaccine (MMR): one in a million.
But this is not solely a factual dispute about how risky vaccines are--it is a philosophical conflict over who should decide what is an acceptable risk. Barbara Loe Fisher, who co-founded the vaccine information center, says she sides with consumers and against the government, drug companies and what she refers to as the medical “elite.”
“We believe our country ought to be producing the safest, most effective and technically advanced vaccines it is capable of producing,” Fisher said.
“If [parents] want to use all vaccines, if they want to use certain vaccines, that . . . should be the right of every American citizen. We should never be forced by law to engage in any medical procedure that carries the inherent risks of injury or death.”
Her group, which claims an active membership of up to 10,000, says families should be given the chance to make an informed choice.
Many public health officials take a different view: Far from a matter of personal freedom, vaccination is a social responsibility.
“In our society, children who do not receive vaccinations are protected by the immunity of those that do,” three health experts sternly cautioned in the Dec. 18 issue of the Journal of the American Medical Assn. “In essence, a de facto social contract exists among parents who immunize their children. . . . Because of the skewed perceptions of risk, parents of healthy children who do not have them vaccinated violate this social contract.”
Thus far, public policy has reflected good-of-the-herd principles. States often require that children receive the MMR, the DPT (diphtheria, pertussis--or whooping cough--and tetanus), the polio and most recently, the Haemophilus influenza type b and hepatitis B vaccines by the time they enter school or day care. All states offer a medical exemption, and most, including California, offer philosophical or religious ones.
About 95% of children in this country are fully vaccinated by school age, the CDC estimates. By age 2, however, the figure is closer to 75%.
In a sense, the country is the “victim of its own success,” CDC spokeswoman Barbara Reynolds said. Vaccination has vastly reduced childhood disease, leaving today’s parents without the mortal fear of contagion that gripped their forebears.
The haunting gasps that gave whooping cough its name are “something people don’t hear anymore,” said Dr. Eugene J. Gangarosa, a professor emeritus at the Emory University School of Public Health.
“We [older people] can empathize with the ferocity of the disease and the mothers whose children died,” said Gangarosa, who lost four siblings to pertussis in the early part of this century. “Mothers today don’t see that. . . . They don’t regard the need for vaccines as serious. And that is most unfortunate.”
As blasphemous as critics’ words are to many health officials, the doggedness of Fisher’s group, and its willingness to work within the system, have paid off.
Eleven years ago, allying itself temporarily with lawsuit-weary drug companies, the National Vaccine Information Center played a major role in establishing a no-fault federal compensation program for patients injured by vaccines.
More recently, the center and other parent groups backed a successful attempt to improve the safety of polio and whooping cough, or pertussis, inoculations.
Last year, medical authorities recommended switching babies to another type of pertussis vaccine, called “acellular,” to reduce the risk of adverse reactions. And the country is phasing in inactivated polio shots to reduce the number of people--eight to 10 reported cases a year--who get polio from the live, oral vaccine.
Now, Fisher’s group is questioning the need for mass vaccinations against usually mild childhood illnesses such as chicken pox or diseases often linked to high-risk adult behavior, such as hepatitis B and, perhaps eventually, AIDS.
Next on the vaccine information center’s agenda: pushing for more research into potential consequences of vaccine contamination by animal viruses.
In January, Fisher was invited to a federally sponsored scientific workshop about a monkey virus, SV40, which contaminated the oral polio vaccine four decades ago.
Fisher dubbed the gathering a desperate attempt at “damage control,” and one government official called her presence “distracting.” But the invitation alone is testimony to her growing sway.
“I think we’ve earned a place at the table,” she said.
Fisher sits on the national Institute of Medicine’s brainstorming committee on vaccine safety with Dr. Richard Johnston, medical director of the March of Dimes. He is complimentary of her work, but warns against abandoning empiricism for emotion.
Critics “have brought forward and made more real concerns about vaccine safety, and that has moved the process along at a faster rate--and that’s good.”
But, he added: “Their interpretation of dangers is sometimes misplaced, because it is based on anecdote and unproven science.”
Even one anecdote, conveyed through the media, can pack a huge public punch.
The appearance of Goldenberg, the Laguna Beach mother, on “Caryl and Marilyn"--a segment about parents refusing “to be intimidated by [the] medical establishment"--drew a record number of calls, producers said.
Resolute and charismatic, Goldenberg tells viewers that she essentially had to cure her own son. She had him tested and retested, pored over medical literature, consulted a range of experts.
Finally, she hit upon an idea: If rubella, the disease, can lead to brain injury, why not the vaccine?
Garrett, as it turned out, had abnormally high rubella levels in his system. Once an immunologist gave him gamma globulin, an infection-fighting serum, he emerged from his shell, she said.
Now an endearing 7-year-old with an impish grin, he drew applause on the set of “Caryl and Marilyn.”
But the federal vaccine injury compensation program denied Goldenberg’s damage claim. And her son’s immunologist says it is premature--and probably wrong--to conclude that rubella vaccinations caused his condition.
The MMR vaccine “may just be a precipitating factor. . . . I don’t think a vaccine can directly cause autism,” said Dr. Sudhir Gupta, chief of immunology at UC Irvine Medical Center.
Gupta added that preliminary research suggests autistic children may suffer immune dysfunction. He is doing a broader follow-up study.
The Institute of Medicine, charged with reviewing vaccine safety, reports that the MMR in rare instances can lead to shock, prolonged bleeding and bruising, or measles. The rubella shot alone can cause acute arthritis.
Critics have raised a far greater ruckus over the traditional DPT vaccine--particularly the pertussis portion. Although mild reactions are common, what draws microphones and cameras are claims of severe neurological damage.
A long-term study by British researchers roughly estimated the risk of persistent neurological damage at one in 310,000 shots.
Federal officials insist vaccines get a bad rap. Many childhood neurological illnesses happen to emerge around the age of the first vaccinations, they say, and many parents confuse mild with severe reactions.
The nearly 1,100 parents who have won compensation claims have met stringent standards and faced intensive government review. But the power of their stories comes mostly from the sympathies they stir.
“It’s been a total nightmare from the get-go,” said Harvey Tony Wilcox, 36, of Mobile, Ala.
His son Terry, now 8, got polio from a vaccine given to him at 9 weeks. A quadriplegic, he survived for years on a respirator and a feeding tube. He couldn’t move his head or talk, but his mental function was “perfect,” his father said, until he slipped into a coma two weeks ago.
Wilcox won his claim against the government but said he has had to fight for coverage of daily necessities. He spends his off hours spreading word of his son’s case online and in magazines.
What comes through most clearly is the father’s bitter disappointment.
“I don’t think they give you your rights,” he said of health authorities. “They don’t give you your options, they don’t tell you what can and can’t happen, and where you can go if something does happen.”
A Tulsa, Okla., mother is equally bitter.
Betsy Bald says DPT shots transformed her healthy 4-month-old daughter into a severely developmentally delayed epileptic.
“We had a resident [physician] in the hospital tell us that sometimes a cow has to be sacrificed for the goodness of the herd,” she said. “That kind of lets you know where [doctors] were coming from.”
Vaccine manufacturers and advocates say that by focusing on sensational--and sometimes unsubstantiated--cases, the media distort risks.
Much is at stake, they warn: In England during the 1970s--when many parents were spooked about vaccination and immunization rates fell to 40%--an eight-year pertussis epidemic was spawned, striking 100,000 people and killing 36.
Critics say manufacturers are fretting over profits, not human lives, with the industry’s worldwide revenues projected to reach $4 billion this year.
Nonsense, say the companies. Their products must be proved safe and effective to the U.S. Food and Drug Administration. And aside from a moral commitment to protect life, they say, they have an economic incentive to keep consumers happy.
Lay critics have enlisted some allies with flashy credentials: dissident doctors and scientists with unproven, yet increasingly publicized, notions.
Dr. W. John Martin, a USC professor, and Howard Urnovitz, an independent Berkeley microbiologist, have suggested that simian viruses introduced by the oral polio vaccine--cultured in monkey tissue--may indeed be contributing to chronic human diseases, cancer or AIDS.
The two scientists, who work separately, are not anti-vaccine. But Martin, whose laboratory was closed by USC in 1995 for unspecified “regulatory and scientific reasons,” appeared on the “Caryl and Marilyn” segment last year to push for full disclosure of vaccine risks.
Urnovitz, who carves time from a busy schedule to field media calls, says he has been urged by health officials not to “create a panic.”
“No one has ever been angry with a weather person for saying a storm is three days away from the coast,” he said. “I’m just here to upgrade the system.”
Dentist and Harvard-trained health educator Len Horowitz publicly theorizes in lectures that the AIDS and Ebola viruses were passed, possibly intentionally, to humans through tainted vaccines.
Then there’s medical historian Harris L. Coulter, who contends in a 1990 book that vaccinations may lead to “social violence” and “criminality.”
Even medical father figures have broken ranks.
Take Dr. Lendon Smith, an elderly Oregon pediatrician and author best known for dozens of appearances on “The Tonight Show With Johnny Carson.” A charming, homespun conversationalist, he appeared with Goldenberg on “Susan Powter” to advise against all vaccinations except “maybe tetanus.”
These men, whom the public sees as experts, should mind their mouths, said Johnston of the March of Dimes.
“It is great to have hypotheses, but it is not correct to confuse the public about what is hypothesis and what is fact,” he said.
Given the conflicting claims, and the importance of the debate, some physicians believe that they can’t afford not to provide detailed counseling to parents on vaccine risks and benefits. Not just the written information required by law, but sit-down sessions about worries big and small.
“There is a wise saying: ‘If you would have public confidence, confide in the public,’ ” concluded an opinion piece in the Dec. 18 Journal of the American Medical Assn. “Any other course may work temporarily, then backfire disastrously.”