Debate over vaccines, autism won't die

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.

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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.”

Lisa Billings / AP A test showed the levels of mercury in Wesley Sykes' blood were "off the chart," according to his mother, the Rev. Lisa Sykes.

Beliefs and evidence are things that Sykes, pastor of Richmond’s Christ United Methodist Church, understands. A soft-spoken, slender woman, she does not come off as a radical. She has a degree from Princeton Theological Seminary. The daughter of two CIA employees, she was brought up to trust the government.

“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.

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.

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