Archive for the 'Blamers and Fixers' Category
August 31st, 2009 by Trisha Torrey
I’ll begin this post by saying that I understand the basics — that many parents of children with autism believe that autism was brought on by vaccines. And that scientific research has over and over again proven that link does not exist.
Then I watched the Dateline / Matt Lauer interviews and exposé, A Dose of Controversy, about where that suggestion came from, profiling Andrew Wakefield, the doctor/scientist who first suggested that link existed, and who is now hailed a hero by many of those parents who still believe in the connection. Also interviewed were two more major players in the argument – Brian Deer, a British journalist who has exposed Wakefield over and over again, and Dr. Paul Offit, infectious diseases expert from Children’s Hospital of Philadelphia, who has written a book called Autism’s False Prophets which lambasts Wakefield’s work.
Matt Lauer pulled no punches in his questioning of any of the three. It’s very clear that the worshipping behavior of these parents who believe that somehow Andrew Wakefield represents the second coming is misplaced. But even more than that – it’s very easy to see how we observers must use the follow the money rule on all three of these men. Perhaps an even bigger lesson has to do with LISTENING.
But we also must remember in the midst of this — that many studies (I can’t find a number, but it was suggested there were at least dozens) — studying, literally, MILLIONS of children — have proven every time (not just some, but every time) that an autism-vaccine link DOES NOT EXIST. Even The Lancet, a highly respected medical journal, the one which originally published Andrew Wakefield’s article about that link, has stated that they never would have published it if they had known how Wakefield’s work had been funded (see below.)
Follow the money (FTM) — it’s the rule that helps explain a lot of the “why’s” in healthcare. Here are examples, as applied to the questions about autism:
FTM explains why Andrew Wakefield would continue asserting that the MMR vaccine causes autism — because he is/was paid in at least two ways to make sure that was clear. First, he was paid at least $750,000 by a company that developed a measles-only vaccine that could have been used as a substitute for the MMR. Now, under suspicion for other (unspecified) charges in his native England, he has set up an outpost in Austin, Texas (have to wonder about the wordsmithing there — Austin and Autism) — but is not licensed to practice medicine in the United States. Parents are paying thousands of dollars to have their children tested for certain gastrointestinal problems possibly related to autism, but it was unclear as to whether any children have actually been helped by Wakefield. Further, outside of parents talking about how wonderful he is, none seemed to be able to pinpoint exactly why — except that he listens.
(All other doctors of every stripe — please take heed of that — HE LISTENS.)
Brian Deer – his FTM is a bit easier to track. He is paid to do his investigating and writing, so finding a goldmine like Andrew Wakefield is job security. It should be noted that Deer also needs the money to defend himself legally. He has been sued a number of times by Wakefield — always unsuccessfully — Deer has always prevailed, able to prove that his allegations about Wakefield were accurate and defensible.
Dr. Paul Offit requires some FTM analysis as well. Beyond the income from his book where he alleges that parents have been scammed by Wakefield for more than 10 years, he is full-on supportive of vaccines – including the fact that he is the developer-inventor of one vaccine. So yes, he makes money as the developer of the vaccine, which seems to be unrelated to autism. Interestingly, he has an expense many would not ever think of — he is forced to pay for bodyguards, because some of those Wakefield supporting parents have threatened his life.
Here are some beliefs I hold, which affect my beliefs about this controversy:
- I absolutely believe each of these parents who has observed their children well enough to say “She was fine, then she got the vaccine, and something happened.” I don’t question that for a minute, because I do believe parents are THAT WELL tuned in to their children.
- I also know human nature well enough to understand why parents cling to any belief that would help them explain something that is otherwise not understandable. As humans, we all want to assign blame. It’s the reason we can’t cope with problems like Hurricane Katrina, or any other mother nature related catastrophe — because there’s really no one to blame. By clinging to the vaccine-as-perpetrator, parents have someone to blame, plus the bonus of a hero in Wakefield. (Plus making Jenny McCarthy a hero — another story for another day.)
- When people are desperate, like these parents with autistic children, they will go to extremes, even when those extremes don’t make sense. To so desperately believe in something that has been disproven in so many ways, and to be threatening the life of someone who truly makes sense — these are moves of desperation.
Combining those beliefs, and having done a brief FTM analysis – we have to look at some bigger picture questions, too. I provide no answers here — I’m just sayin’…
- So what if Wakefield and all these parents are right? What if the MMR vaccine DOES trigger something that causes autism? Maybe it’s not the vaccine itself — maybe the child happened to have eaten something that day, or has another very mild, asymptomatic virus or bacteria in his body — or ? It could be the vaccine in a combination with something else – I do know a genetic link is being studied, too.
- Even if there is a link — how does that change things for the parents whose children do have autism? It doesn’t mean there is a cure. You can’t subtract the vaccine from their bodies. So why would parents put so much energy into their hero-making – at the expense of taking time away from their own children to do it?
- Autism is a “spectrum disorder” — is it possible it’s not just one thing? Is it possible that even though the symptoms and some of the behaviors are similar, that these children really have different disorders — triggered by different things? Whose to say that some forms of ADHD, for example, aren’t really a part of that spectrum? I know there are many discussions of misdiagnosis among both autism and ADHD diagnoses….
Finally — I believe the bottom line here is the fact that NONE OF THESE PROFESSIONALS get the fact that the passion and desperation fuel this fire and that the people who feel the most maligned (the parents who believe in Wakefield) do so because they feel that he LISTENS.
And that is the bottom line for today’s very long-winded post. We all need to listen more because listening, then responding appropriately, will lend itself to compromise and understanding — no matter what the controversy.
I’m listening — what can you tell me that will help explain what I don’t understand?
July 9th, 2009 by Trisha Torrey
As predicted, the fearmongering, half truths and out-and-out lies about healthcare reform have begun in earnest. I received an email from a dear and respected friend yesterday and was appalled at the dis-information it contained.
So I’ve decided to share the email with you and show you where it is wrong and why you need to question anything you hear in these kinds of emails, blog posts and other pieces you may read.
The email, called SENIOR DEATH WARRANTS is printed here in its entirety. I’ve footnoted my responses below.
The actress Natasha Richardson died after falling skiing in Canada. It
took eight hours to drive her to a hospital. If Canada had our healthcare she might be alive today. In the United States, we have medical evacuation helicopters that would have gotten her to the hospital in 30 minutes. (untrue – see comment 1)
In England anyone over 59 cannot receive heart repairs or stents or bypass because it is not covered as being too expensive and not needed. (untrue - see comment 2)
Obama wants to have a healthcare system just like Canada’s and England’s. (untrue - see comment 3)
I got this today and am sending it on. If Obama’s plans in other areas don’t scare you, this should! Please do not let Obama sign senior death warrants!!
Everybody that is on this mailing list is either a senior citizen, is
getting close or knows somebody that is. (true!)
Most of you know by now that the Senate version (at least) of the “stimulus” Bill includes provisions for extensive rationing of health care for senior citizens. (untrue – see comment 4)
The author of this part of the bill, former senator and tax evader, Tom Daschle was credited today by Bloomberg (untrue - see comment 5) with the following statement:
Bloomberg: Daschle says “health-care reform will not be pain free. Seniors should be more accepting of the conditions that come with age instead of treating them.”
(untrue – see comment 6)
If this does not sufficiently raise your ire, just remember that our esteemed Senators and Congressmen have their own healthcare plan that is first dollar or very low co-pay which they are guaranteed the remainder of their lives and are not subject to this new law if it passes. (true!)
Please use the power of the Internet to get this message out. Talk it up at the grassroots level.
We have an election coming up in one year and nine months, and we have the ability to address and reverse the dangerous direction the Obama administration and it allies have begun and in the interim, we can make their lives miserable. Lets do this! (see comment 7)
Comment 1: Natasha Richardson fell and hit her head, and refused to be taken by ambulance to the hospital. No one can be treated if they don’t seek treatment. Yes, later her husband phoned for help, but by then it was too late. Could they have taken her by helicopter for help if she had been in the US? Maybe — but we will never know. This form of condemnation of Canada’s healthcare system is purely speculation. No matter what country anyone lives in, they won’t get care if they refuse help. News articles indicate that helicopters are available for transport in many areas in Canada, but not remote areas. That is true in the US, too.
Comment 2: I went straight to some doctors in the UK for this answer ( I network with many doctors in England on Twitter.) They assure me that there is no such policy. One even asked me “is that a serious question?”
Comment 3: I have scoured the Internet and can find no where where any bona fide news organization has reported that Mr. Obama has made any such statement. There are blogs, comments and editorials on some news websites, but no hard news anywhere that reports this statement or any statement like it.
Comment 4: The stimulus bill has nothing to do with quality of care or delivery of care. It does contain $57 billion for development of an electronic medical records system which will eventually cut the cost of care and will improve the safety and delivery of care. Will rationing take place? Of course it will. It already does. But that has nothing to do with the stimulus bill!
Comment 5: Bloomberg has never quoted Tom Dashle saying any such thing! I checked in with one of my favorite resources, Politifact and they spell out exactly how this rumor came to be.
Comment 6: In fact, that quote came from Betsy McCaughey in the form of a letter to the editor. And while I have admired Dr. McCaughey’s work in hospital acquired infections for many years, I believe she is WAY off base by making such a statement. Inflaming an already contentious argument does not help. (Update: McCaughey is truly going off the deep end, now making statements that the healthcare reform will will make it mandatory for Medicare recipients to go through required counseling to tell them how to end their lives sooner.)
Comment 7: Healthcare reform is going to happen. We can make it easier on ourselves by dealing in the truth, and helping the cause. Or we can make it far more difficult on everyone by fearmongering and inflaming. Sending an email full of half-truths, lies and speculation doesn’t help! If you truly want to get involved at the grassroots level, then I ask you to instead contact your local congress person and share your feelings about what is important to you.
Read more about the Senior Death Warrant at my About.com blog.
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Do you have concerns about healthcare reform? Have a rumor or concern you want clarified? Pose it here and we’ll try to uncover the truth.
February 27th, 2009 by Trisha Torrey
A friend and colleague, Franny, shared her story with me and caused my jaw to drop. Then, I realized it didn’t really surprise me at all.
Having suffered months and months of treatment for his brain cancer, Asa’s life was almost lost due to the arrogance of the resident who was in charge of his care.
Read Franny’s story and see what you think. Then see if you agree with the steps she took afterward or whether you might have done something else instead.
A Doctor’s God Complex, a Life Nearly Lost
February 4th, 2009 by Trisha Torrey
(The following is reprinted with permission from John James, PhD, a patient safety advocate who came to his work after the loss of his son, Alex, to medical errors. Dr. James publishes a monthly patient safety newsletter, and has written a book focused on what he learned about the dysfunction of America’s for-profit healthcare system. His book is called A Sea of Broken Hearts. Dr. James has also been one of my guest bloggers.
I share it with you today, because it provides two lessons for us. First, that whenever we access medical information, we must be sure we are assessing it objectively, and getting objective information from it. And second, because it reminds us that medicine is so very personal, that almost no medical information can be completely objective. Even those strictly scientific medical research results we find?… they were biased to some extent when they were designed.
Among those of us who bring you patient empowerment and patient safety information, we do try to be as objective as we can. But…… well….. read what Dr. James has to say…. )
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Healthcare Journalism and Truth
A perspective article in the New England Journal of Medicine gave me a dose of my own medicine to ponder. Susan Dentzer, a medical journalist, poses important questions about the role journalists should assume in communicating information to the public.6 To what extent should the big picture be conveyed? How far can one go in sensationalizing a reported medical discovery? Is the story I am writing something my readers might use to determine their own care, and if so do I have a responsibility to be more careful? How far should I go in mentioning caveats to the reported results? Have I over simplified the results to keep my story short?
I have chosen to become a medical journalist in a most unconventional way. I am neither a journalist in the usual sense, nor am I a medical caregiver. I am only a medical scientist trying to communicate to my readers the important patient safety findings that appear in selected medical journals. I am not making a living as a medical journalist. I do this because my heart has been broken by uninformed and unethical medical care, and I do not want this to happen to others.
My stories are intended to be useful to readers in their own medical care and to be useful in informing ordinary folks of risks associated with healthcare. I must ask myself, am I writing in a balanced, objective and clear way? I honestly struggle with these issues at times. Medicine is incredibly complex and placing new information in perspective is not easy. If I seem at times to give medical advice, this is not my intention. I seek to convey scientific facts to you that will help you ask the right questions of your doctor. I’m not a physician, and I don’t pretend to be one.
Am I biased in my reporting to you? As much as I want to be objective, those of you who have read my book know that I think we have an unethical, dangerous and profit-driven healthcare industry. I will do all I can to expose examples of these problems and show how we might one day have an ethical, cost-effective, inclusive, and trustworthy healthcare system. I am biased that way.
As careful as I try to be, I will make errors of perspective and balance in my stories. For all the criticism I level at the American healthcare industry, I too shall err.
~ @ 2009 John James, PhD
