Friday, January 16, 2009

The Disapointment of Hearing "Your Results Don't Matter"


I am not categorically opposed to "alternative medicine," provided that each accepted treatment is properly tested in an ethical and scientifically sound manner (but I just call using acidic Vitamin A to treat acute promyelocytic leukemia plain old "medicine"). However, friends will sometimes advocate for a particular alternative therapy, be it a tincture, muscle manipulation technique, or adjunct cancer treatment, with the the promotion "My relative tried it and she had great results." To which I usually just respond with, "Cool, Thanks."

I respect the intelligence of my friends, and thus usually speak up and engage them in conversation, when I find something they say to be questionable. However, I keep mum when facing a statement about a close one's personal recovery. There is simply no polite way to say "The experience of your relative does not matter."

I am certainly happy if a friend's loved one recovered successfully from his or her illness. But the fact of his recovery has a less than minuscule effect on my views concerning the value of the treatment. I have no idea if the recovery was because of the treatment, despite the treatment, or for some completely unrelated reason. I say a "less than minuscule", rather than a non-existent effect on my confidence in the medication, because the anecdote does teach me "At least one person was able to recover from his illness while (but not necessarily as a consequence of) using this treatment (Treatment A)." The practical effect of this knowledge would be that, were I placed in a hypothetical situation, in which I had to quickly save someone by choosing between said Treatment A or Unknown Treatment B, I would probably preferentially grab Treatment A. I don't anticipate facing such a "deserted island"-like scenario in my lifetime, so I can safely say that I would be no more or less likely to use Treatment A in practice.

I wonder if the harshness of the objection is what makes some people resistant to evidence-based-medicine. What we are basically saying that no matter how much someone suffered, and no matter the magnitude of her eventual breakthrough, her case is scientifically irrelevant, so long as it was not added to long list of comparable patients of a similar demographic. People want to feel like their experiences matter. Nobody wants to simply be a statistic.

The problem is that treating people as individuals, and caring deeply about the welfare of one patient, both requisite components of empathy-based-patient care, are not pertinent components of evidence-based medicine. It is when we take the good intentions of the former, and impose them upon the cold calculations of the latter (or vice-versa), is when we start to provide medical care that is less efficacious, and less empathic, respectively. Empathy requires a dogged commitment to the patient and his relatives, science involves an exacting focus on anonymous people whose names will never be disclosed. Perhaps it is this intense desire to celebrate the personal, rather than the abstract, that drives us to make crucial cognitive mistakes.

While I am angry that Jenny McCarthy's "advocacy" work may harm many children, her biases seem to stem from natural human feelings that arise to deal with uncertainty, to maintain control over our environment, and, most of all, to find personal meaning in our experiences.
I am currently reading Paul Offit's wonderful book, "Autism's False Prophet's," which transcribes Jenny McCarthy's statements on Oprah, including this response to a question:

"My science is Evan, and he's at home. That's my science." [Loud, thunderous applause].


I honestly am not mocking Ms. McCarthy when I say that I wish I could point to the difficult experiences of loved one's illnesses and call them "my science." But no matter my sympathy of the motivations, it is irrational, nonetheless. And it could potentially cause enormous harm.

Paul Offit also presents the transcription of a doctor name Dr. Geier, who testified against vaccinations in court, and who had been peddling his own untested autism medication called "Lupron." Dr. Geier said,
"We presented a new idea on how to treat autism and how to treat mercury poisoning, because these kids aren't autistic, they're mercury poisoned. Although I'm not happy with trying it on children without further research, these people are desperate and there have been some remarkable responses."


"Remarkable responses," "Try it: He had good results," "My family is my science": All of these are erroneous statements that are damaging to health care. One must develop the humility necessary to accept the limited applicability of one's experiences and observations. This is a difficult bias to overcome. But to do so is necessary, because, as Roger Brinner brilliantly quipped, "The plural of anecdote is not data."

5 comments:

Ginger Taylor said...

You seem to have made an assumption here, that certainly would be a reasonable one if Paul Offit and his compadres are your main source of information on biomedical intervention for autism. And that seems to be that just because Jenny McCarthy didn't present the kind of evidence you are looking for to prove the efficacy of the treatments she used when she was on Oprah, and just because Offit says there is none, that they don't exist.

I am the mother of a 6 year old that regressed into autism following his 18 month vaccinations and have gotten him about halfway back with the evidence based interventions that Offit has derided.

Offit is not a good source on autism treatment (he does not even treat children with autism, he is an infectious disease specialist), and his vast conflicts of interest should be raising huge red flags for you.

-He is a vaccine patent holder who won't say exactly how many millions he made from RotaTeq, but says it was like "winning the lottery".

-He was reprimanded by Congress for his ethical breaches and conflicts of interest when as a member of the ACIP failed to abstain, but rather voted to put RotaShield on the CDC schedule, effectively creating a market for his own vaccine by insuring that it would go directly into doctors offices nationally the day after it was approved.

-RotaTeq is arguably the least important vaccine on the schedule for children to receive as Rota virus represents a minimal health threat to American children. (CDC's web site recommends that it be treated with rest and Pedialite). If Jenny's message that kids are getting "Too Many, Too Soon" is taken seriously and adopted, and the vaccine schedule is paired down, certainly RotaTeq will be the first to go as it has been confirmed that it causes Kawasaki's disease and fatal Intussusception.

-He has been publicly and repeatedly corrected for spreading misinformation and inaccurate statements about the cases in the vaccine injury compensation program, most notably this past year in both the Wall Street Journal and the NEMJ.

-He is currently being sued for libel by at least one person he wrote about in the book.

-Although he is quoted at least weekly claiming that vaccines have no relationship to autism, he almost never discloses that he is a vaccine patent holder and has major conflicts of interest. CBS News even did a piece on his failure to disclose (Along with AAP and Every Child By Two. And it turns out Amanda Peet is even being paid by Wyeth for her vaccine promotional spots).

-He routinely makes outlandish and irresponsible remarks such as his famous, "theoretically a baby can receive 100,000 vaccines at once safely" absurdity (I wrote to him the first time I saw this in print and was sure it was a misquote, and asked for a corrected quote from him. He replied that it was a correct quote and "that is probably a conservative number".)

(To be frank, we can't under stand why anyone takes him seriously, and suspect that it is his mere bravado that has prevented people from cluing in to the fact that he is not responsible physician.)

So given all the potential for bias here, don't you think that it might be wise to take a hard look at the other side and make sure that the information he is giving you is reliable and complete?

Because it is not like you have just one mom, Jenny McCarthy, standing up in public and claiming that she recovered her son from autism using these methods, the same year that her book came out, 2007, the Autism Research Institute documented more than 1,100 cases of kids loosing their autism diagnosis following biomed.

The plural of anecdote might not be data, but is a hell of a clue that any honest, earnest, evidence based loving clinician would be remiss not to examine, to put it politely. Criminal might be a better characterization.

"her case is scientifically irrelevant, so long as it was not added to long list of comparable patients of a similar demographic."

So ask yourself, if Offit and CDC and AAP and the vaccine industry are so keen on insuring vaccines don't cause autism, and why have then not take Evan and those 1,100 kids, put them in a long list and compare them to patients of a similar demographic? (Why is there no study comparing kids with an autism diagnosis who undergo biomed with those who don't to see how functional they are at age 10 or so?) Jenny has repeatedly called CDC and asked them to examine her son and all the kids like her son, yet they have never contacted her or ARI or any of the parents who have before and after videos all over the internet showing their recovery stories.

Does that lack of curiosity raise any red flags for you?

Do you think that if one medical practice (much less several dozen) announced they had 1,100 cases of people who recovered from HIV/AIDS, all with evaluations, test results, medical records and videos to prove it, that CDC et all would collectively yawn, quote Brinner, claim it is not data and never even pick up the phone to see if an actual cure had been found? Even for just some cases of HIV/AIDS?

Not in a million years.

(...and if that ever happened, San Francisco would burned to the ground by protesters).

So why is it that with all the claims of vaccine regression and subsequent recovery, are you satisfied with the "no association, no know cause or cure" line from the very people, Offit, HHS, CDC, AAP et al, who would be held responsible and be out of their collective posteriors for causing the autism epidemic if it turned did out to be the vaccines?

Especially when they are not showing up in our community to evaluate our claims and examine our kids?

Especially when they are doing everything possible to prevent REAL vaccine research from being done. Like just three days ago when the Federal members of the IACC voting NOT to study vaccine causation" with the funding from the Combating Autism Act (in opposition to the community members, autism parents, who wanted the research done), one of the regional intents of which was to study the possible association between vaccines and autism.

Ask yourself, why won't health authorities do a simple study comparing vaccinated and unvaccinated children, to look for overall health out comes and see if kids vaccinated according to the CDC schedule have more autism, ADD, asthma, diabetes, arthritus and other neurological and immune disorders?

Why does a Congresswoman have to propose a bill to force NIH to do the study? Shouldn't they want to do it? Certainly there are more and more unvaccinated kids out there to study, and if in fact Offits claim that there is absolutely no association is true, then it can only improve vaccination rates to put a study out that can make the claim with authority.

And why... when no such study exists, can anyone make the claim that vaccines don't cause autism? Vaccines as a whole have never been studied, merely a few different aspects of the vaccine program. And they have been studied quite poorly in many cases.

So... at the conclusion of my long winded comment, I would like to call your attention to Bryan Jepson's book, "Changing the Course of Autism: A Scientific Approach to Parents and Physicians". I would like to encourage you to read it and then look back at Offit's book and see if he actually is taking apart the case for biomedical research or just going after the easy targets like McCarthy, while ignoring the actual biomedical approach to autism and the science to back it up.

You owe it to your future patients to have actually teased out the truth on this for yourself rather than just swallowing what those who quite obviously and transparently protecting professions and individual careers tell you the truth is.

You clearly, clearly want to make the right decisions for your patients. What if the right decision for some of your patients was not to vaccinate them according to the current CDC schedule (clearly it was the wrong decision for Hannah Poling, Madison Hiatt and the thousands of others who have received a billion of dollars from the Vaccine Injury Compensation Fund)? And the right decision for some of your patients with ASD was exactly what Jenny McCarthy did for her son? And what if you never looked into it because Offit etc told you not to bother?

Bottom line, if you don't look all sides on this and make your own decision (rather than just joining the Orac insult-o-rama), then you risk taking on their crime of injuring children and withholding needed treatment if 'my side' is right.

I urge you, while you are still very early in your career, to take this subject very seriously and listen to autism parents and see if their concerns, questions and challenges are actually being answered by those you are taking your advice from currently. Are they really dealing with them, or just setting up straw men and knocking them down?

I (and many other parents) would be happy to talk to you about what we have learned and experienced and why we believe as we do, should you earnestly want to investigate autism causes and treatments on your own.

Anonymous said...

I really appreciate this post.
As a scientist, this issue aggravates and saddens me. While I was in college, I took a course (PSY 4931 Autism I) by Mark Durand. Durand is a really big name in ACADEMIA for Autism research, (not as big as Baron-Cohen, yeah, Borat's cousin!) and this particular issue is what was the biggest "take home message" for me in this class.

I was never interested in Autism but I went to see Durand speak and this issue is what made me take the class. He said he subscribed himself to the Yahoo!, FOX, CNN, and NY Times articles that have been tagged with "Autism." The results? Despicable, just like my Alzheimer's professor who did the same thing.The same junky, horrendous research that has been teased and fluffed was all over the headlines. If it wasn't junky, "inside-job" research, it was research actually done in academia but with the results horribly misinterpreted and conclusions made extremely irresponsibly.

My comments concern information and the "elite", mass media, and the American public.

McCarthy has done American parents a huge disservice. Average, American parents do NOT have access to peer-reviewed (read: non-junky) research journals. This is something Durand addressed within the first five minutes of speaking. Universities, libraries, etc. are the only institutions that can afford to have subscriptions to these journals. The general American public has HUGE problems with teasing apart correlation from causation, and the general knowledge on statistics and scientific method are not looking up, either. The American public also doesn't completely understand what a "self-fulfilling prophecy" - probably the "bounce back," "regression," or "recovery" these parents are talking about.

McCarthy clearly knows neither. Cheers to her for comparing Autism to "being hit by a bus," and saying "God deliberately chose me to have an Autistic child." "There's such a gut-brain connection. People tell me that's not true, well I'd like to try that in a bar!" Does she not understand that a drink has mechanism of action IN THE BRAIN? It's a brain to brain connection, not a "gut to brain" connection just because you consume it. Jesus! Shameful, really.

It's the worst disservice to such a vulnerable population. She carts around her same physician and he only admits that he "may think" that "some of the things" in vaccines "may" contribute "in part" to Autism.

The biggest victim here are the parents; moms and dads. The ones who are so overwhelmed with this new diagnosis so they had online quickly and google Defeat Autism Now and make it their mantra. The next step? MASS MEDIA. Borders. Barnes and Noble. Books-a-Million. Amazon. To pick up the tell-all book with an attractive, accomplished woman with a beautiful child on the cover who has rid himself of a condition that their very own child is going through.
Science isn't easy. It takes time, and it's hard. It's much easier to log online and join a commmunity of people who seem to have "cleansed their children's buckets" of autism.
My best advice? Bring out the books. Durand purposely teaches his course online. Go sign up, read, read, read, TEXTBOOKS AND JOURNALS, and go from there.



My best advice to parents with Autism

Anonymous said...

The sad fact is that most people don't want to spend the time and effort it takes to become truly proficient in a scientific field. Heck, most people don't want to spend the time it takes to become proficient at tennis!

As a result, we have had - for decades - a wide variety of "schemes" to give people "instant expertise". Until fairly recently, it was mostly in the form of "self-improvement" or "self-help" books - Molecular Genetics for Dummies, You: Basic Repair Manual and, of course, Everything I Know about Autism I Learned in Kindergarten.

Lately, there has been an upsurge in people who think that they can learn - and understand - complex biological and medical issues by "researching" them on the Internet. Ginger - whose comment is above - is an example of the new legions of "Google PhD's" who think they understand medicine and biology because they've read a summary or two on the Internet.

Unfortunately, these people are not easily convinced that their understanding of science is superficial, at best. Although most of them wouldn't even think of fixing their kitchen sink, they are confident that they know as much about biology and medicine as people - like yourself - who have spent (or are spending) their entire adult lives studying and researching their scientific field.

Some of this is the post-modern "other ways of knowing" nonsense (try one of those "other ways of knowing" to fly an airplane) and some is the natural inability of people to understand how complex a field - scientific or otherwise - is when they know so little about it. The end result are thousands of pseudo-experts, "Google PhD's", who cannot see the error of their "reasoning" because they lack the basic understanding to see why they are so clearly in error.

Good luck to you.

Prometheus

shellity said...

Adina, I think your approach is brilliant - I really enjoyed reading this post.

There's nothing wrong with reacting in an emotional and caring way to a situation, but you're spot on when you say that science and medicine necessarily must sideline emotion and sympathy for the sake of objective and testable results. That's not to say that scientists and doctors don't ever care or sympathise with their patients, mind.

In a nutshell, I'd rather have an arsehole of a doctor treat me with an appropriately tested and approved drug or method than have the nicest, most caring and understanding practitioner treat me with a load of codswallop.

MC said...

Wow, Ginger Taylor doesn't just spread misinformation on her own blog, she brings it to other blogs.

Her comment about Dr. Offit being sued for libel is nonsense. JB Handley, an embarrassment to the autism community if there ever was one, blustered about a small error in Dr. Offit's book. Mr. Handley has sent a letter to the publisher, and was resoundly smacked down for his efforts. Oddly, Mr. Handley decided to post the correspondence to his own blog.

A quick check of Mr Handley's website where he infringes on Dr. Offit's name shows the effect--Handley was forced to remove the libelous material from his website. Oops.

Dr. Offit has almost certainly treated autistic children--unless it is Ms. Taylor's assertion that autistic children don't get infectious diseases. What rubbish.

Dr. Offit was not reprimanded by congress. One congressman, who holds a great responsibility for promoting the autism/vaccine idea well beyond any science he had, pointed out his annoyance with Dr. Offit in a hearing. VERY different from congress as a whole "reprimanding" Dr. Offit. But, I guess Ms. Taylor isn't above spreading libelous misinformation either.

Rotateq has the potential to save 250,000 people worldwide. But, I guess that isn't important to Ms. Taylor. I guess the idea that the measured rate of intussesception is lower with Rottateq.

I guess she is referring to Dr. Poling's attempt at rewriting history when she says that Dr. Offit was "corrected". Not how it read to those who took a close look at both sides, Ms. Taylor.

Dr. Offit makes it extremely clear that he was an inventor of a vaccine. That is vastly different from "holding" a patent, by the way. He did not get direct royalties, but instead was compensate by his institutions--who actually did hold the patent. The patent rights being now sold, that conflict of interest is gone--Dr. Offit will not profit any more from those patents.

If Ms. Taylor doesn't like the comment about the immune response to the antigens in 100,000 vaccines, she is invited to do the calculation herself and demonstrate the mistake. No one who complains about that statement has yet even attempted to do this simple, yet necessary, calcuation.

To be frank, I don't know why anyone takes Ginger Taylor seriously. She's a third rate blogger who routinely spreads misinformation. Heck, she has posted information that even the Age of Autism blog wouldn't touch.