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The following is NAA's response to the Wall Street Journal Editorial published on February 10, 2004, a copy of which appears below.

To the Editorial Board of the Wall Street Journal:

It is our hope that you will choose to print this letter in response to your February 9th editorial concerning parents of those affected by autism. A number of responses sent to your publication which addressed your two December editorials in the most concise and fact-based way, including a letter from a major autism organization, various qualified researchers, and a former high-ranking staff member of the Congressional Reform Committee, went unpublished. If there is perhaps a way we can alter our letter to ensure publication, without compromising our overall message, please let us know.

To address this latest editorial, it’s only fair to clarify some of your points. First, the National Autism Association is a non-profit, not-for-salary organization. We are simply parents of children who have autism. It is in no way fun for us to do what we do on a daily basis with no pay while being targeted by those who claim we are only scrounging for lawsuit money. We do it for our children and those who have no way of speaking up for their children. We believe that if we address the cause, we will find the cure.

Your publication called us antagonists, among other things. It’s surprising that a publication of your stature would make such generalized statements which, in itself, seems antagonistic, especially considering you received many matter-of-fact, sincere letters that went unmentioned and unpublished.

Your editorial called us a small group. “Small” is a relative term. Actually, a large percentage of the autism community believes their child regressed as a result of certain vaccines. Even so, being what you consider a small group does not make this issue any less important.

Other points you made:

“[Parents] loudly claiming that thimerosal a preservative used in vaccines for 60 years, is the cause of autism in their children.”

With all due respect, your opinion failed to mention the dramatic increase in the use of thimerosal starting in the early 1990’s. Perhaps your opinion is that of ignorance. We stand firm in our belief that the increase in thimerosal coincides with the increase in autism. Autism was first labeled right around the time thimerosal-containing vaccines were introduced.

“Their [Parents] allegations have scared many parents about immunizations, sent trial lawyers scurrying to sue the few remaining vaccine makers, and inspired an ugly political dispute.”

We never discourage parents from having their children vaccinated. We simply want them to be educated enough to ask for thimerosal-free vaccines. Please note, thimerosal is still found in some childhood vaccines---the full dose. It is the reluctance of the medical community to address the issue with its patients, the backroom/dead-of-night politics of Senator Bill Frist, the Simpsonwood documents recovered through FOIA, and an FDA memo that stated they were "asleep at the switch," which has made the public untrusting.

Senator Frist is trying to take away the rights of children. His bill isn't an attempt to make autistic children go through the National Vaccine Injury Compensation Program (NVICP), as your editorial claims. Rather, it would shut them out of the process completely. The three US Senators you continue to degrade helped these children keep their rights. You seem to have a different point of view. However, we feel that the people who were most involved with that issue, the people writing you this letter, have a better grasp of what really happened. Again, none of us received a call from you to get our comments of the matter.

It is our children's right to have their stories heard in a Court of Law. The NVICP does not allow for the discovery phase, which is the only way all the facts regarding thimerosal will come to light.

The NVICP is a broken program which protects a billion-dollar industry that needs no such protection. The drug companies are "few" because they, themselves, made it that way through acquisitions and mergers. Vaccine manufacturers steadily increase in profit---no vaccine manufacturer has ever left the market for liability reasons, according to reports by our own government. As for the politicians, they will do as they see fit based on their own judgment and that of their staffers. The Wall Street Journal should not accuse parents of autistic children of dictating what a politician does or does not do. This also seems antagonistic on your end.

We certainly do not support those few in our community that may be threatening to you. Unfortunately, when you publish an opinion that far off base, you run the risk of angering certain readers. In any case, we support the many individuals that, again, wrote you very telling responses that simply went unmentioned and unpublished.

While NAAR is a separate organization and in no way represents the autism community as a whole---they are certainly entitled to fund research as they see fit. Using them as an example, however, while not listing other organizations' true intentions, seems to be part of your ongoing, unbalanced reporting under the guise of an opinion. To call them a "victim" is a stretch in wording at best. Again, your editorials are speaking impetuously without the proper research first and have failed to accurately represent both sides. If you want to know who the real victim is in all this, you need not look any further than our children.

We have asked time and time again for the Bush administration to address this issue and have been ignored. Congressman Burton was turned down twice after asking for a White House conference which would have been a venue for debate. We are not avoiding a debate, we are downright begging for one. We have received no calls from your publication asking for comments about debating the issue. Regardless of this being an "opinion piece," we were told by your own staff that your editorial board researched the issue before those editorials were published. Why was only one side researched? Why does an opinion need to be researched if it's simply a casual opinion? We, of all people, have absolutely nothing to hide and are very confident in the science that supports our beliefs.

The parents who developed “Lorenzo’s Oil” were also part of a small "loud" group and ridiculed at one point. Your lack of faith in parents of disabled children is perhaps based on your lack of real knowledge coupled with the perception that experts come only in the form of those who are certified, yet have no first-hand experience. Nonetheless, we do not need the blessing of the Wall Street Journal to help the children of this country who continue to suffer. We would ask, however, that instead of focusing on the politics and the controversies which is obviously not your area of expertise, you educate your readers as to what autism (now as many as 1 in 150 children) will cost American tax-payers in the coming years.

Sincerely,
Members of the National Autism Association

 

Wall Street Journal Editorial
Tuesday, February 10, 2004

Autism and Vaccines

Everyone in our business learns to take a punch, but even we've been surprised by the furious response to an editorial we ran a few weeks ago about vaccines. The subject deserves further attention, not least because the goal of our antagonists appears to be to shut down public debate on the matter.

For the past few years, a small coterie of parents has taken to loudly claiming that thimerosal, a preservative used in vaccines for 60 years, is the cause of autism in their children. Their allegations have scared many parents about immunizations, sent trial lawyers scurrying to sue the few remaining vaccine makers, and inspired an ugly political dispute. Lost in the controversy has been a little thing called science.

We felt someone ought to point out that nothing currently exists in the medical world to justify this furor -- that thimerosal has never been credibly linked to autism, and that recent studies in leading medical journals have also failed to find a link. That research is one of many reasons the medical community remains solid in its belief that vaccines are safe.

To our surprise, we had wandered into a hornet's nest of moral intimidation. In letters and e-mails we've since been accused of "fraud," a "terrorist act," and of having an "industry profit promoting agenda." We've been told we belong to a vast conspiracy -- including researchers, pediatricians, corporations, health officials and politicians -- devoted to poisoning their children. A few have harassed our secretaries and threatened an editorial writer.

As writers for an independent newspaper, we aren't about to shut up. But what worries us is that these activists are using the same tactics in an attempt to silence others with crucial roles in public health and scientific research. The campaign to silence or discredit them has already had damaging consequences.

A case in point is the National Alliance for Autism Research. This widely respected outfit was founded by parents of autistic children, and its staff and volunteers have raised millions for research. When the autism claims first surfaced, NAAR dutifully cofunded a Danish study, which found no connection between the measles-mumps-rubella vaccine and autism. Within days, the critics were trashing NAAR, claiming it was under the influence of drug companies (untrue) and suggesting its research couldn't be trusted. NAAR had to spend valuable time and resources rebutting those claims so it can remain a source of honest information for worried parents.

Meanwhile, doctors who have spoken about the benefits of vaccination -- Paul Offit (who writes here) and Samuel Katz (the co-creator of the measles vaccine) -- have been targeted as baby killers and compared to Hitler. The goal appears to be to silence doctors who encourage immunizations.

That would be a disaster. While we don't know what causes autism, we do know that diseases like measles cause blindness and brain damage. Doctors are already struggling to be heard over Internet rumors, and they report that parents are increasingly nervous about vaccines. That's how paranoia started in England and Ireland, where parents were swept up in autism claims and refused to immunize. Ireland, a country with a population 77 times smaller than that of the U.S., reported 2,000 measles cases in 2002. The U.S. had 37.

As it happens, the thimerosal flap has already taken a human toll. Health officials recommended taking thimerosal out of vaccines in 1999 to help calm fears -- but this only fueled claims of a government cover-up. Worse, as Dr. Offit reported in a recent issue of Pediatrics, some hospitals misinterpreted thimerosal-related recommendations and suspended some vaccinations for newborns. One institution later reported the death, from acute hepatitis B-induced liver failure, of a three-month-old infant who wasn't immunized.

Aided by trial lawyers, the intimidation has spread to Congress. Vaccine makers receive some liability protection from the federal Vaccine Injury Compensation Program -- which pays out to the rare family whose child is injured by vaccines. But tort lawyers have exploited loopholes to file billion-dollar thimerosal suits that could bankrupt the few remaining vaccine makers.

When Republican Majority Leader Bill Frist tried to modernize VICP -- and require autism claims to go through the program like everyone else -- the autism police went to work. They camped out in Washington and convinced three Republican Senators to kill any liability protection. The Senators claimed in a recent letter to us that they hope the bill will be reconsidered, but it seems to have disappeared. The lawsuits go on.

None of this, we should stress, is in the interest of families struck with autism. Researchers have spent years studying the vaccine-autism link, and we hope they continue. But if the research disproves a connection -- as it has up to now -- the autism community needs to listen and move on. Research dollars are limited, and parents of autistic children deserve to see the money spent where it will do the most good.

Autism is a terrible diagnosis, and we hope science soon gives parents the chance at a cure. But the best way to achieve that goal is through open and honest inquiry that shouldn't be stopped because of the clamoring of an intolerant few.


 
 

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