Autism Growing, But Causes Are In Dispute
By Scott Brooks
WASHINGTON – Jareb and Avery Lopez are identical twins. They are six years old, with dark hair and brown eyes. They also are autistic.
Their mother, Sherry Amaral, says her sons were not born that way.
Ms. Amaral, of New Bedford, said she believes the twins were poisoned during infancy, when doctors administered their required vaccine shots.
Those shots, she says, put her children on a crippling path, where language skills that they had started to develop suddenly vanished and everyday stresses caused them to vomit and shriek.
Ms. Amaral is one of many parents across the nation who blame vaccines, particularly those containing mercury, for a startling increase in autism among children. Though there is some disagreement, most scientific studies have not found a link between vaccines and autism.
Doctors have not, however, provided Ms. Amaral with an explanation for her sons’ condition.
“I have a hard time understanding it,” she said. “How can they develop normally, then all of a sudden start to regress?”
Since doctors diagnosed her sons almost three years ago, Ms. Amaral has waited for the day when someone would compensate her family. Until now, that has been impossible.
A federal program that compensates people who have been injured by vaccines has been closed to Ms. Amaral and her sons. To be eligible for compensation, the family would have had to file a claim with the program within three years of the boys’ vaccinations. Ms. Amaral, who did not learn about allegations that vaccines might cause autism until years after her sons’ diagnoses, was six months too late.
However, after a tortuous path through Congress, a bill that is now gaining momentum aims to make drastic changes to the program. The legislation would give Ms. Amaral a chance to file for compensation, but, advocates for autistic children warn, at a price.
The bill would protect some pharmaceutical companies from hundreds of lawsuits that have been filed against them nationwide. Parents no longer would be able to sue the companies, but instead would file for compensation from the federal government.
But the government wouldn’t necessarily agree to pay the families. That would come down to whether parents such as Ms. Amaral can prove a link between vaccines and autism.
The bill’s supporters – led by Senate Majority Leader and licensed surgeon Bill Frist of Tennessee – say no such link exists. Much of the medical community agrees.
At the center of the dispute is thimerosal, a mercury-based preservative that until recently was prevalent in several mandatory childhood vaccines. Ms. Amaral said her sons were exposed to an excessive dose of thimerosal when they received hepatitis-B vaccines and other shots.
Around the time the boys were celebrating their first birthday, they were inoculated against measles, mumps and rubella. Although that shot, which combines three vaccines into one, did not contain thimerosal, some parents suspect it can produce adverse reactions in certain kids.
Ms. Amaral said she can see the changes in her family’s home videos. On tape, she said, the boys appear to be reaching all of the typical childhood milestones. They have a short list of words they can pronounce with total clarity: mama, papa, ball, cup. They can call out to their aunt in Portuguese, the language of Ms. Amaral’s family. Today, they can’t do any of those things.
Pediatricians were slow to recognize the severity of the boys’ illnesses, Ms. Amaral said. When Jareb and Avery were diagnosed around age 3, she said, she started doing research but couldn’t find a suitable explanation for what had happened.
One day, Ms. Amaral saw a magazine story on thimerosal. Suddenly, she said, it made sense.
An Autism Epidemic
In Massachusetts, the autism rate has shown a steady increase in the past two decades. In 2001, the state reported 92 cases of autism among teenagers born in 1985. That compares to 193 cases among children born in 1990 and a statewide high of 318 cases among children born just two years after that. National studies show a similar trend and, though estimates vary, most suggest that autism rates have jumped significantly in the last decade.
But scientists are unclear on just what caused the spike. Perhaps doctors have gotten better at diagnosing less severe cases, spotting them earlier and more often. Or maybe the criteria for positive diagnoses have expanded.
Fairhaven nurse Pam Ferro, whose 11-year-old son is autistic, insists vaccine poisoning is to blame.
Ms. Ferro, who directs an autism program at Hopewell Associates in Mattapoisett, said she has observed a distinct increase in autism rates in the SouthCoast. The autism treatment center, which she co-founded, recently held a conference in Fall River for families with autistic children. Without much advertising, she said, the event drew 150 parents.
Ms. Ferro said some areas of Massachusetts, such as the old industrial districts of Fall River, are especially toxic. If a child is genetically predisposed to getting sick, pollution can increase their chances of being diagnosed with autism, she said.
Fish, too — a staple of the SouthCoast economy — are known to contain mercury, and pregnant women are sometimes advised to avoid eating certain types.
“It’s some genetics that play a role, but kids are getting a huge environmental insult,” Ms. Ferro said.
But Ms. Ferro, like other parents, is still looking for research to back her claim that thimerosal is directly responsible for increased autism rates. The Institute of Medicine, a private medical research organization, looked into the matter two years ago and found only that it was “biologically plausible.” The researchers concluded there was insufficient evidence to accept or reject the theory.
Leading advocates for autistic children tend to point to a recent study, led by Dr. Mark Geier, a Maryland geneticist, which reported a link between thimerosal and autism.
Many scientists, however, say the study was unconvincing. They charge that Dr. Geier has a conflict of interest because he has testified on behalf of plaintiffs in various vaccine injury cases.
Dr. Geier is resolute in assigning guilt to vaccine companies. In a recent interview, he said the autism cases make AIDS, as well as the Sept. 11, 2001, terrorist attacks, “look like a joke,” and called the issue “the greatest catastrophe in the history of the world.”
Critics note that so-called mainstream medical journals have shunned the Geier study.
“Try to find it,” challenged Dr. Karin Nelson, a neurologist at the National Institute of Neurological Disorders and Stroke. Dr. Nelson is the co-author of a competing study released earlier this year that found no evidence of a link between thimerosal and autism.
Without much else to go on, many autism groups chide the federal government for being reluctant to fund new investigations. Some go so far as to say that the government, along with drug companies, is fearful of what researchers might find. If, in fact, a link is discovered, the costs to both could be extraordinary.
Cambridge businessman and autism activist Mark Blaxill, the father of an autistic 7-year-old, said he believes respectable scientists have been discouraged from pursuing the matter.
“If this is true, this is a massive blunder, and it calls into question the entire governance process of the childhood immunization program,” he said. “It would mean hundreds of thousands, if not millions, of children have been harmed by government policy. This is not a comfortable theory.”
Dr. Nelson, however, said it isn’t like that. She said the government is interested in other areas of research, where federal dollars and personnel can be put to better use.
“It’s a matter of priority,” she said. “There’s a lot of important research to do. I think this hasn’t been thought sufficiently plausible to pursue.”
Washington Weighs In
Talk in Washington about the controversy has centered on one question: How, if at all, are families to be compensated?
Claims against vaccine makers typically go through the federal Vaccine Injury Compensation Program, which Congress created in 1986 to absorb legal costs that might otherwise have sunk the industry.
But Congress failed to account for a loophole in the law, which allowed lawyers to file lawsuits against companies that manufacture the components of the vaccines but not the vaccines themselves. Thimerosal is one such component.
Lawsuits are also being filed against companies that make neither the vaccines nor the vaccine components. In the last few years, hundreds of lawsuits have been brought against Eli Lilly, a pharmaceutical company that, spokesman Ed Sagebiel said, has been out of the vaccine business for more than 25 years. The company was the first to use thimerosal in its vaccines, beginning in the 1930s.
Congressional Republicans – who received three-quarters of all pharmaceutical companies’ campaign contributions over the past two years — say the lawsuits are a serious threat to the manufacture of vaccines. If pharmaceutical companies are held liable for multimillion-dollar jury awards, they will stop making vaccines altogether, the Congress members contend.
At the end of the legislative session last fall, Republicans slipped vaccine industry protections into the high-profile Homeland Security bill.
By the time advocates for autistic children discovered the provision, it had passed Congress. President Bush signed the bill. But earlier this year, opponents succeeded in getting the measure removed, a quick turnaround that rarely happens on Capitol Hill.
The new legislation, sponsored by Sen. Frist, would steer families of autistic children away from the courts and into the federal compensation program. The government would decide whether and how to award parents for their children’s injuries.
Unlike last year’s measure, however, this one would open the program to Ms. Amaral and other parents who missed the deadline for bringing a case. The change could be crucial for Ms. Amaral, who worries that the cost of caring for her sons is more than her family will be able to handle.
There are the family’s grocery bills, for one. Because her children’s stomachs are particularly weak, everything Ms. Amaral buys has to be organic. She makes most of her meals from scratch.
There also are specially ordered supplements, as well as therapeutic devices, including a trampoline.
And, of course, there are medical bills. The boys have seen several allergists, and the family has gotten used to the constant need for new tests. Ms. Amaral said regular testing rarely proves accurate, so she takes the boys in regularly for specialized tests, which her health insurance does not cover.
There seems to be no end to the costs, she said. Ms. Amaral, who lives with her sons and boyfriend, works part time for the Nemasket Group, a Fairhaven nonprofit providing support to mentally challenged adults.
“Even if, let’s say, a miracle happens — they start talking, or however you define a miracle — I envision they will need help for the rest of their lives,” she said.
Ms. Amaral is not confident she will ever see compensation. Under the Frist bill, how much money, if any, parents receive would be up to the U.S. Court of Federal Claims. Without more research to back their claims, many parents are not holding their breath.
“We know we’re going to get denied,” said Laura Bono, a North Carolina autism activist and mother of an autistic teenager. “What are the chances of my child getting any sort of compensation? It’s just very slim.”
Vaccinations Continue
In 1999, government health officials recommended that thimerosal be reduced or eliminated in childhood vaccines. No recalls were ordered, but according to the Centers for Disease Control and Prevention, the industry agreed to federal recommendations. Today, the CDC reports, all recommended pediatric vaccines being manufactured for use in the United States contain no thimerosal or only trace amounts.
Ms. Bono said the industry should have pulled thimerosal from the market entirely, but she thinks she knows why that didn’t happen. If makers stopped selling it, the autism rate would bottom out, a sure sign that thimerosal causes autism, she said.
“I can’t prove it,” she said. “It’s just my belief.”
Dr. Geier said thimerosal is still in half of all childhood vaccines on the market. He recommended that parents check the package insert for a vaccine’s contents before allowing their children to be immunized. Ms. Ferro offered the same recommendation.
Proponents of the new vaccine bill, however, expressed concern that these warnings, and the autism groups’ efforts to publicize their concerns about thimerosal, are creating a panic.
“I am deeply concerned that these unsubstantiated allegations are frightening parents and that some might not get their children immunized on time, which puts children at a much greater risk,” said Dr. Louis Cooper, former president of the American Academy of Pediatrics. “That’s what scares me.
“I know that today’s kids are so much safer because of these vaccines, but they’re only safer if they’re used.”
Autism groups, such as Ms. Ferro’s Hopewell Associates, maintain that they are not anti-vaccine. But, Ms. Ferro said it should be the drug companies, not parents, who are responsible for ensuring that vaccines are safe.
“There’s enough sick children out there to know that what we’re doing right now is not the proper way to vaccinate kids,” she said. “I agree if we don’t fix the situation, we’re probably going to see measles again. We’re going to run into a bigger problem with lots of children not being vaccinated. However, until they agree to fix the problem and change the protocol, that’s what we’re facing.”
Published in The New Bedford Standard Times, in Massachusetts.
