Wesley Sykes is in a rage.
Dinner was late. His cup held water, not soda. Strangers had stolen his mother’s attention all afternoon. It is too much for the 9-year-old autistic child to bear. He begins to flap his arms and shriek, working himself into murderous screams that shatter his suburban home and all hope of a normal life.
His mother, the Rev. Lisa Sykes, has her own rage, against the demon she blames for Wesley’s condition. It is thimerosal, a mercury-based preservative she received in a shot during pregnancy and he received in childhood vaccines.
To the Richmond, Va., pastor, this is a just crusade. To most scientists, it’s a leap of faith. The levels of mercury in vaccines — now and in the past — do not cause autism, they repeatedly have declared.
But not everyone is convinced. Seven years after it began, the debate over vaccines and autism just won’t die.
No answers for parents
In fact, it appears to be finding new life. Several churches have started a grassroots movement to rid vaccines of mercury. A new book on the issue is getting attention. A Kennedy has entered the fray.
“I think this issue has persisted, despite a boatload of scientific evidence...because there are no answers for parents of children with autism,” said Dr. Sharon Humiston, a University of Rochester pediatrician with a foot in both worlds. She once worked for the government’s National Immunization Program, and she has a son whose autism she refuses to blame on vaccines.
Medical controversies flourish when science is lacking. In this case, both sides have limited science and each criticizes the other’s.
Vested interests make it tough to know who to believe. Many parents have filed lawsuits. Many scientists have ties to vaccine makers or are selling their expertise in court cases. Government officials don’t want people to turn away from vaccines, which have clearly benefitted public health.
Both sides also have credibility problems. Opponents initially accused the measles vaccine, which never contained the preservative, of causing autism. The government defended a troubled pertussis vaccine for more than a decade before switching to a safer version.
“There’s conflict on all sides,” said David Kirby, author of “Evidence of Harm,” a book urging more research.
There are two main questions:
- Did older vaccines, which contained more thimerosal than the trace amounts in modern ones, raise the risk of autism?
- Are there risks today? Flu vaccine sold in multidose vials still contains the preservative, and the government urges flu shots for pregnant women and young children even though not enough thimerosal-free ones are available, critics say.
Finding answers is tough because autism, a little-understood developmental disorder, often is diagnosed at the very ages when children get vaccines.
The stories are remarkably similar: A seemingly normal child gets a shot and days, weeks or months later, withdraws from the world, stops speaking, becomes upset at random stimulation such as a doorbell, and adopts compulsive behaviors like head-banging.
Parents blame vaccines, but “that doesn’t make it true, no matter how strongly they believe it,” said Dr. Steve Goodman, a Johns Hopkins University biostatistician who served on an Institute of Medicine panel convened last year to take an independent look at the evidence, which it found unconvincing. “There doesn’t continue to be scientific argument.”
“I dare them to call me hysterical,” she said. “I’m the last one who should be screaming conspiracy.”
Her son was a normal, active baby. A photo shows Wesley clutching an Elmo doll, his blue eyes shining and aware. But in a later photo, taken after autism had set in, Wesley stares vacantly next to his smiling brother.
Through a local autism group, Sykes heard a doctor was advising cod liver oil as a treatment. She gave it to Wesley for three days, then tried an experiment on her son, who had stopped responding even to screams. “Wesley,” she said. He looked up at her.
The pastor was sold. She tracked down the doctor, Mary Megson, who tested Wesley’s blood for minerals. Most were within a normal range. The line for mercury, however, flowed off the chart.
“That was my baptism into this issue,” Sykes said.
During pregnancy, she had been given a shot to prevent problems from occurring because she and her baby had a mismatched blood factor. Now, she learned that the vaccine contained thimerosal, which is half mercury. The additive was also in most childhood vaccines, and had been used since the 1930s to prevent bacterial contamination, especially in multidose vials.
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Failure to regulate industry?
By November 1997, Congress was getting complaints. It ordered the Food and Drug Administration to review mercury in vaccines, drugs and food. The government and a doctor group said there was no evidence of harm but that vaccine makers should move toward eliminating thimerosal to be safe. It wasn’t until 1999 that vaccines with only trace amounts of thimerosal started to be introduced.
By then, parents had organized. Barbara Loe Fisher, a Virginia mom who is president of the National Vaccine Information Center, which had successfully campaigned for the safer pertussis vaccine, was disturbed federal officials didn’t order thimerosal out.
“I believe this is a failure to regulate industry, no question,” she said.
She believes a theory supported by many, that a subset of kids can’t handle mercury because of a genetic or other kind of predisposition. Some scientists say it might be something else in the vaccines, such as aluminum, or a hyper-reaction to the vaccine itself. There’s a 3 percent to 8 percent recurrence rate of autism in families and the disorder is four times more common in boys — more suggestion of a genetic link.
A suburban Kansas City family’s experiences suggest such a link. The afternoon after Kelly Kerns’ 2-month-old daughter Kaylee got several vaccines was “living hell,” with the child screaming and arching her back, her mother said.
“I kept telling myself everybody gets vaccinated — this is OK,” she said.
When Kaylee was 18 months old, her white-blonde hair began falling out and she stopped talking. Meanwhile, Kerns had twin boys — Andrew and Daniel. When they were 15 months old, they received three vaccines. A week later, they stopped talking. All three children have since been diagnosed as autistic.
In June 2000, government officials, scientists and vaccine makers held an invitation-only meeting at a Georgia retreat to review safety data the Centers for Disease Control and Prevention had from several large HMOs.
The CDC’s Dr. Tom Verstraeten presented results of a crude analysis suggesting mercury might be linked to some problems like language delays. As for autism, “we don’t see much of a trend except for a slight, but not significant, increase for the highest exposure,” he said, according to a transcript that vaccine opponents have posted on the Internet.
Pressed to quantify risks, Verstraeten demurred, saying, “it is giving more accuracy to this data than what they really have.” But he admits that when he reviewed others’ studies, he was “stunned” to see how plausible the argument of harm was, according to the transcript.
The Institute of Medicine in 2001 also found the theory “biologically plausible” but said evidence was inadequate to accept or reject it.
Verstraeten ultimately published a medical journal article saying there was little evidence of a link. That enraged U.S. Rep. Dave Weldon, a physician and Republican from Florida, and U.S. Rep. Dan Burton, an Indiana Republican whose grandson has autism.
Relying on 'cigarette science'
Fights over limits to damages that families could seek in lawsuits followed. They drew the attention of Robert Kennedy Jr., a lawyer and environmentalist.
“I kept getting approached by these mothers of autistic kids who said the exposures from vaccines dwarfs any exposure we’re getting from environmental mercury,” he said.
Kennedy, who has pushed the issue on news shows and in an article in Rolling Stone magazine, said that when he looked at the government’s evidence it was “laughably flawed.”
“It was clear to me that the reports they’re relying on are ’cigarette science,”’ he said, referring to tobacco companies’ past arguments that there was no proof cigarettes caused cancer.
Even if there were a link, proving vaccines cause autism is another matter, said Dr. William Schaffner, a Vanderbilt University professor and longtime government vaccine adviser.
There are scientific tests of causation: the problem appears soon after the exposure; the link makes sense biologically; the risk rises as the dose rises; the link is strong and consistent rather than weak or occasional; the problem doesn’t occur without the exposure (a test rarely met).
The final test: the problem or risk falls if the exposure is discontinued. Studies from England, where thimerosal was eliminated sooner than in the United States, indicate that autism rates continue to rise, not decline, even without the preservative, he said.
Also, he and other scientists point to the case against silicone breast implants, involving years of court battles. Lawsuits alleged the implants caused fibromyalgia, based on isolated cases. “Now all the epidemiology is against it and that has quietly shifted away,” Schaffner said. “Scientific issues are not resolved in the courtroom.”
Sykes has another place in mind.
“When the federal institution will not respond appropriately, take it to the church,” she said.
More battles, more tears
Two weeks ago, she convinced the Virginia Conference of the United Methodist church — the largest conference in United Methodism — to pass a resolution calling for the removal of mercury from vaccines.
It now heads to the Board of Global Ministries and the Board of Church and Society of the United Methodist Church for consideration. The same resolution passed Kerns’ East Kansas Conference of the Methodist Church 650-0 a few weeks ago.
The Virginia Synod of the Evangelical Lutheran Church of America has referred the measure to a committee. The Virlina District Church of the Brethren, which serves parts of Virginia, West Virginia and North Carolina, is drafting its own version.
Meanwhile at Sykes’ home, the day that melted down with her son’s screams was turning into night. Wesley has drifted off to sleep. The phone’s incessant ringing stops. Sykes’ husband, Seth, returns home from work. Outside, all is quiet except for the musical tinkling of a passing ice cream truck.
Later, Wesley wakes up and finishes his dinner. He cuddles with his dad in the recliner and watches TV before going to bed.
There will be more tantrums, more battles, more tears, for Wesley and his mother.
But for a rare moment, everything seems normal. There is just sweet, blessed peace.