A THREAT TO JUSTICE EVERYWHERE

During the struggle to try and secure civil rights for all Americans in the sixties, Dr. Martin Luther King, Jr. found himself incarcerated in Birmingham, Alabama. His time in jail was put to good use, as he wrote a letter to a group of clergymen who, although sympathetic to Dr. King’s cause, were critical of the Birmingham demonstrations as being too confrontational. In other words, Dr. King was rocking the boat.

The letter Dr. King wrote from the jail, in my opinion, is one of the greatest pieces of prose in the English language, a call for all to do what is right. The whole letter is summed up in its most famous sentence:

Injustice anywhere is a threat to justice everywhere.

Those were the first words that came to me when I heard of the decision by the GMC in the ethics case against Andrew Wakefield and his colleagues, John Walker-Smith and Simon Murch.

Their wrong was simply to tell the truth. There were others who joined in the Lancet case study that found a potential connection between the MMR vaccine and autistic enterocolitis. The others were pressured to repudiate the article – or to say it more accurately, to repudiate a finding that was not made by the study. Dr. Wakefield and his colleagues never stated that the vaccine caused autism, but merely that there was a need for further study.

Even the recommendation for further study was a threat to a lot of powerful influences in the public health establishment and its allies in the pharmaceutical industry. And the Wakefield findings have been replicated on more than one occasion, so merely throwing competing studies out there would not kill the controversy.

Enter Brian Deer, a British “journalist” looking to make a bigger name for himself. By mangling together two different studies and reports Dr. Wakefield participated in, Deer presented ethics charges that objectively do not hold water. But the charges were not to be heard objectively.

For an excellent and dispassionate look at the charges and their fallacy, see the article by William Long (originally printed in The Autism File), which can be found here in pdf format.

Now, after years of proceedings, wasting God-knows-how-much money and resources, the General Medical Council found that there were violations. As a result, Dr. Wakefield and his colleagues will likely lose their professional licenses. Ironically, the evidence presented to the GMC against the three was primarily testimony by witnesses with far more-extensive conflicts of interest than those ascribed to Dr. Wakefield (see here).

Of course, there will be many who will say that this outcome proves the fallacy of the case study’s conclusions. It is a further piece of irony, that those who will most loudly deliver that collateral attack include many of the same people who would defend epidemiological studies performed by those with fatal conflicts of interest.

I listened to live coverage of the verdict on the Linderman Live program on Autism One Radio. I heard that Brian Deer made a statement that, “it’s a great day for children, a great day for medicine, and – dare I say – a great day for journalism.”

No Mr. Deer, in fact it is a tragic day for children, a tragic day for medicine and science, and – dare I say – a tragic day for journalism. We’ve already seen over on this side of the pond the kind of yellow journalism practiced by Deer. The once mighty Chicago Tribune has sold itself to the powerful interests who are more interested in the status quo than they are the truth.

Even if we were to take the provincial position that today’s announcement was an injustice only in the UK, there is a serious threat to justice here in the US. Without doubt, there will be moves made against many of the physicians and scientists who are helping our children. And the truth may not be a strong enough defense for them.

The truth will only be strong enough to defend us all when the emerging science progresses to the irrefutable point, at which time the Paul Offits, Julie Gerberdings, and Brian Deers of the world will not be able to deny what has happened to our children. Unfortunately, the research needed to bring out that truth is not being funded.

The attacks on Dr. Wakefield and his colleagues are also attacks on us and on our children. We stand with them.

HERE I GO, RAILING AGAIN

Fairly soon after our open letter to the Chicago Tribune (see last entry) was reposted at Age of Autism, some fellow by the name of Prescott Carlson posted a criticism at Chicagoist. That entry, entitled Parents of Autistic Boy Rail on Trib for “Editorial Bias,” referred to the letter as a “lengthy screed.”

Reading through Mr. Carlson’s brief post gave me the distinct impression that somehow the meaning of our letter had gotten lost, and that left me in a bit of a quandary. I felt an explanation was in order (even though the letter itself was already pretty clear), but a real explanation needs a little length, something which Mr. Carlson apparently disapproves of. So it would be rude to post a lengthy explanation as a comment at the Chicagoist, but here, on my own blog, I can be as long-winded as I please.

Length of prose is always a delicate matter of balance. Too short, and the message might not be clear. Too long, and some readers might focus on individual trees rather than the forest. Such is the case here. Mr. Carlson stated that we:

accuse Tsouderos of “[straying] from the principles of balance, fairness, and the truth” in her articles, and even hinted that the Trib's deciding to focus on the subject at all was misguided, saying:

The articles by Ms. Tsouderos were given front-page treatment, including the latest, which came at a time when every other organ of the press was focused squarely on the recent tragedy in Haiti.

We did not attempt to imply that the Tribune’s exploration of the issue was “misguided.” Had that sentence been read in the context of the complete paragraph from which it was cherry picked, the point becomes obvious. Believing that the OSR story (or non-story depending on one’s opinion) was more important than the tragedy in Haiti is a bit ridiculous, especially when the same paper has yet to devote any appreciable space anywhere in the front section to the latest CDC numbers released in December.

The Tribune is unwilling to acknowledge there is a public health crisis, but they are sure willing to say they know how not to treat the non-crisis. That is not just an editorial bias; it is nonsensical.

Moreover, the Tribune reporters have gone about their work in an intellectually dishonest manner. I spoke to one parent who Ms. Tsouderos interviewed for one of her early stories; that parent felt she had been lied to by a reporter who kept leading her into statements that did not reflect what was truly intended.

And it’s not just parents Ms. Tsouderos misquotes. As was noted in our letter, a distinguished physician and scientist at Harvard, Dr. Martha Herbert, complained about being quoted out of context, resulting a misleading expression of Dr. Herbert's opinions. But accurately quoting Dr. Herbert or any of the other qualified doctors and scientists who are looking into potential treatments does not serve the Tribune’s bias. It’s far easier for them to paint a picture of Dr. Boyd Haley as a snake-oil salesman than it is to acknowledge his extensive qualifications and his solid research.

I generally try to steer clear of discussing specific interventions and protocols we use. I will say that, based on what we have heard and seen, the Lupron protocol and OSR #1 (both of which were the subjects of Tribune smear pieces) may be appropriate treatments in particular circumstances. Each autistic child presents a unique clinical picture. What is right for one is not necessarily right for another. Whether a particular intervention is appropriate for an individual depends on the nature of the problems underlying the autistic symptoms, and should be chosen after a careful weighing of potential benefits against risks.

The Tribune, however, is not interested in the successes of our families, as they do not sell papers as well as sensationalism does. Nor is Ms. Tsouderos interested in the successes parents have had. For it’s far easier to get promoted to science reporter from the entertainment beat if you write a sensational exposé rather than a human interest story about families helping their kids.

It’s all a matter of proportionality. One of the comments left at the Chicagoist illustrates the lack of recognition that the Tribune’s articles are far too choosy in picking their targets. Somebody using the handle “Ward Up,” wrote:

The Rankins are frustrated and that is understandable. However, their frustration should not trump scientific evaluation.
If an autism drug has not been proven in a randomized, prospective trial, then that drug cannot be recommended by the Tribune or by anyone, for that matter. Doing so would be a disservice to families of children with autism.
The Tribune deserves praise for its articles on this subject. We need more light shined on these therapies to separate effective medicine from snake oil.

You know what’s frustrating, Ward? I’m frustrated that the same people – like Ms. Tsouderos, Mr. Carlson, and well … you – are so willing to decry so-called “alternative” therapies, but very few of you seem to have a problem with the all-too-common pediatric practice of prescribing Ritalin, Risperdol or even Prozac to autistic children under the age of five. Those are off-label uses of very dangerous controlled substances, and yet the FDA and AAP seem to condone it. Where is your outrage about that? Where is the Tribune’s exposé on that?

There’s nothing at all wrong about reporting on a controversial issue and newspapers are allowed to have an editorial bias. That all adds to a healthy debate of issues, which was certainly contemplated by the drafters of the First Amendment. Part of the bargain, however, is that the issue needs to be presented fairly, accurately, and completely. The Tribune reneged on its part of the compact between itself and its readers, and that was our complaint.

AN OPEN LETTER TO THE TRIB

January 21, 2010


Mr. Tony Hunter
President, Publisher
Chicago Tribune Company
435 North Michigan Avenue
Chicago, IL 60611


Dear Mr. Hunter:

A few days ago, we called the circulation department to cancel our subscription to The Chicago Tribune. We thought it appropriate to write and explain why we thought this necessary. Put briefly, the Tribune’s continuing written assault on the autism community and those who serve us has caused us to lose the high degree of respect we once held for your newspaper. Specifically, articles written (or co-written) by Trine Tsouderos have, in our opinion, strayed from the principles of balance, fairness, and the truth.

By way of background explanation, our family is one of the hundreds of thousands in this country who have felt the impact of the autism epidemic. We are part of a growing number of people who have chosen not to meekly embrace our son’s disability, but rather to seek biological explanations for the clinical manifestations that led to the diagnosis and to utilize the best medical treatments to treat the underlying physical conditions. We are not alone on this journey, and like most of the parents who embark on this course, we are well-educated. Both of us have professional backgrounds (including a background in mainstream medicine).

Each case of autistic spectrum disorder is unique from a standpoint of both cause and treatment. We have utilized some so-called “alternative” therapies together with more traditional treatments. The continued improvement of our son’s clinical manifestations has been nothing short of remarkable. Our story is not unique; there are many of us who have seen first-hand the success that can result from treating underlying physical conditions instead of just the symptoms by which autism traditionally has been defined.

Many in our community have attempted to speak to Ms. Tsouderos about the healing we have seen in our children, but she has shown little interest in exploring our perspectives. Instead, she chooses to rely on the same talking points we have so often heard from groups and individuals with vested interests, while ignoring scientific studies providing a basis for the treatments.. On those occasions when she does quote someone – whether a parent, a practitioner or a scientist – that quote is invariably taken out of context and is either inaccurate or incomplete. For example, an article this past November, mined several quotes from Dr. Martha Herbert, a distinguished neurologist at Harvard. This was Dr. Herbert’s response to the Tribune, which your paper chose to ignore:

I did a rather long interview with the Tribune to explain my thoughts on chelation and additional approaches to solving the health issues connected to autism. The only consequence of my interview is that you use a solitary quote to make me sound contentious and defensive. Is there a reason you chose not to use something I said that would actually illuminate the discussion surrounding chelation and other medical treatments for medical compromises that may exist in these children?

To be sure, this is a complex and often controversial subject. The Tribune’s editorial stance on autism treatments, however, seems inconsistent with other positions it has taken. Recently, your paper printed an exposé on overuse of drugs at nursing homes, a worthwhile subject. Why is the only focus of your autism coverage upon so-called “alternative” treatments? Why is no attention paid to the frighteningly large number of physicians who want to treat autistic children under the age of five with dangerous stimulants and psychiatric pharmaceuticals? And why does the Tribune not show outrage at the fact that the American Academy of Pediatrics endorses that off-label usage of pharmaceuticals in their published treatment recommendations for autism?

The Tribune has run recent articles on rising numbers of allergies (including one noting the difficulties the Army is having in filling its ranks due to high incidences of allergies and asthma). Is your paper at all interested in exploring the interrelationship in the alarming rise of various auto-immune disorders: childhood cancer, asthma, allergies, ADHD and autism spectrum disorders (although not unanimous, more and more scientists are acknowledging that disorders in the immune system can cause clinical manifestations of autism)?

Our kids are the canaries in the coal mine. Something is going wrong with an entire generation, and it is rooted in environmental causes: adulteration of our food supply, chemical pollution, contamination of our water, overuse of antibiotics, and quite possibly a public vaccination schedule gone haywire. It’s not just scientific research that’s needed to put these puzzle pieces together; we also need the illumination of the questions in order to solving the questions a public priority. The role of the press is to present the issues in such a manner as to fairly raise the questions. In that, the Tribune has fallen well short of its duty.

The articles by Ms. Tsouderos were given front-page treatment, including the latest, which came at a time when every other organ of the press was focused squarely on the recent tragedy in Haiti. The lack of proportionality in that is summed up in one question. Why did the Tribune not show equal alarm with a major front-page article last month, when the Centers for Disease Control announced new autism statistics? According to the CDC, autism spectrum disorders effect one-in-110 children (one-in–70 boys), which is a dramatic increase from the one-in 150 the CDC announced just two years ago.

This country is facing a public-health crisis of catastrophic proportions, in which too many families are having to make difficult decisions. Instead of amplifying the seriousness of the situation, the Tribune has chosen to blindly criticize some of the scientists and clinicians who are searching for the answers.

We have no doubt that the loss of our subscription will have little economic impact on your company. Further, the publication of the articles in question will have little adverse impact on the Tribune’s reputation – at least not immediately. What the Tribune has lost, however, is far more precious. It has lost the integrity upon which the paper’s reputation was built through generations.

Yours truly,

Sym and Wade Rankin

cc: Samuel Zell
Chairman, Tribune Company