Archive for the 'Medical and Research Studies' 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?
May 29th, 2009 by Trisha Torrey
I’ve always admired Oprah. To me she has been the perfect example of the American dream, while retaining her moral compass and behaving ethically. Until recently, she managed to make her billions by keeping the best interests of her audiences at heart. She had my admiration and my respect.
But no more.
Keep in mind, that when I mention ethics and morals, I’m not suggesting she avoided controversy or wasn’t willing to stick her neck out politically. Of course, Oprah has been at times controversial and political.
As she has every right to be! It’s her show / magazine / network / production company / conglomerate! She hasn’t earned her following by being neutral or wishy-washy. Even when I have disagreed with her opinions on some topics, I still believe she has had every right to voice them.
But until recently, when she has taken a stand, she has done so to improve her audience’s knowledge of a topic, or to help them understand why she believes the way she does. Oprah has helped us understand point-of-view, whether or not it’s our own point-of-view.
And until recently, I have admired her ability to bring so many and varied points-of-view to her audiences, without her #1 focus being how she could make money from it. Granted, she invites guests who will maximize the size of the audience, meaning, indirectly, increased income from sponsors, magazine and TV show advertisers, etc.
That’s fair.
What’s wrong is what she has done recently and that is, she has signed a contract with Jenny McCarthy. McCarthy is no longer a once-in-awhile guest. Now she’s one of Oprah’s annointed ones. It marks a shift for Oprah, a shift in the wrong direction.
And now, I am no longer a fan. For the first time, I believe Oprah has traded her media soul to the money-making devil. And that has tainted everything she will do from now on.
In case you don’t know who Jenny McCarthy is, she is a former playboy bunny – come – self-proclaimed expert in autism. McCarthy has a son who she claims to have cured of his autism. She has written books, marched on Washington, and been very vocal, presumably on behalf of families of children with autism.
For the record, I do not claim to know much about autism at all, and for all I know, maybe she HAS cured her son.
What I object to is not McCarthy’s work in autism — rather — her stance that since she believes her son’s autism was caused by vaccines, she now adamantly advises new parents to refuse to have their children vaccinated for childhood diseases. Her son was born in 2002.
Here’s the problem with that:
First — there is no proof that vaccines cause autism. In fact, all the proof is to the contrary. The agent contained in vaccines that some argued may have caused autism was called thimerisol. Thimerisol has not been used in any vaccines since 1999. Yet, the number of children diagnosed with autism is on the rise. Clearly, something else is causing it.
The second problem — that vaccines have been developed strictly to destroy the diseases that destroy lives, but they can’t do their job if they aren’t being used. Think of the millions who were injured or killed by polio before the polio vaccine. Today, the only people getting polio are those who have not been vaccinated. If children are not vaccinated they will risk polio and it’s their parents who, by choosing not to have their children vaccinated, will put their children at risk. That’s true, too, for every other childhood disease.
Read Time Magazine’s interview with McCarthy. And McCarthy’s very classy quote,
“I do believe sadly it’s going to take some diseases coming back to realize that we need to change and develop vaccines that are safe. If the vaccine companies are not listening to us, it’s their f___ing fault that the diseases are coming back. They’re making a product that’s s___.”
(Those are Time Magazine’s bleeps, not mine.)
As one friend put it: Jenny McCarthy is systematically destroying children’s and families’ lives by taking such a dangerous stand. How is that any different from Adolph Hitler?
Jenny McCarthy is not an MD. She has no medical credentials whatsoever. Yet young parents are listening to her because they are desperate to find someone who can help them with their autistic children. If they listen to what she has to say about helping their child recover from autism — great. But to listen to McCarthy’s medical advice about vaccines? That’s foolish.
Now — returning to Oprah. Oprah has had Jenny McCarthy on her show any number of times. That’s a good way to showcase McCarthy’s point of view, especially when it’s contrasted with those who are experts, those who really do know something about autism and vaccines.
But to sign McCarthy on, as she has with Dr. Phil McGraw and Dr. Mehmet Oz? They ARE doctors! What message is that sending to those who can’t discriminate who does and who does not have good information? (And I wonder how Dr. Phil and Mehmet Oz feel about being in the same media camp as McCarthy?)
And won’t it be interesting when McCarthy spouts her medical opinions (opinions, NOT facts) on her show, a parent does not get her child vaccinated, that child and others are debilitated or die from McCarthy’s advice? I wonder if Oprah will be sued along with McCarthy? Afterall, it’s Oprah who has given her the platform.
Oprah — sorry — but you’ve stepped over a line of trust and respect. You made that flip to the darkside, all in the interest of growing your franchise and making money.
You’ve lost this fan, and I suspect, many others.
Update 5/31/09: Apparently Newsweek agrees with me. Oprah has truly stepped over the line.
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
June 24th, 2008 by Trisha Torrey
For those of you who have read my misdiagnosis story, you know that one of the ultimate heroes was the pathologist (I’ll call him Dr. H.) who helped me understand how the misdiagnosis happened. Even though he was one of the doctors responsible for getting it wrong, in the end, he didn’t turn away or try to avoid me. Instead, he explained to me how the mistake was made. He even apologized. There was some relief in that, even though it didn’t change the outcome.
Fast forward four years. Last week I was invited to visit Dr. H’s lab, the lab where my specimen was mis-read, the one where my misdiagnosis really took root. It’s a hematopathology lab, meaning specimens like lymphomas, tumors, abnormal growths. What Dr. H wanted me to know was that procedures and policies have been changed. In his words, had I not brought the inherent problem-causing procedures to their attention, had I not held their toes to the fire, they’d still be doing things the old way.
And people might still be getting misdiagnosed.
For this woman who has fought on behalf of patients for four years…. that was a melt-down point. All good. Dr. H. showed me how the processes have changed. It’s a way of handling paperwork and the eventual reports that are issued. It turns out my misdiagnosis was more about piecemeal reporting, and less about bad science.
The tour lasted about an hour. I saw all kinds of specimens under microscopes, printed reports, color-laced spots on a computer monitor (all well protected so I saw no names — good privacy) — and when we were finished, and I did understand how the original mistake had happened, and what was being done for today’s patients to prevent it from happening again…. I asked only one thing. This, from my follow up email to Dr. H – and I’m quoting:
I recognize that there will always be a certain number of mistakes that will happen in the reading / conclusions drawn from samples / specimens. I’ll never forget your words to me those four years ago – that you were taught in medical school that there will be mistakes, but if you have to err on one side or the other, you would want to err on the side of getting someone treatment they didn’t need, as opposed to missing a diagnosis that would require treatment. I understood it even then. It makes sense. And I agree that it’s probably best for the majority of patients.
But when I look at those 10,000+ numbers of specimens being reviewed each year, I have to think there is some of the human aspect being lost. As you will remember, I did ask the one woman in the lab where we reviewed the lined up chromosome reports, about aligning the work you do with the people who are represented by all those samples. I do understand the responses you both gave me about objectivity, but I still feel it’s important to make this emphasis: I don’t think it takes away from objectivity to remind yourselves on occasion (as an entire group of lab professionals) that each report is followed by emotion of real human beings who are receiving answers about their lives. Each one of those samples represent life, death, debilitation, illness – short term or long term. If the three most important things in life are love, health and the finances needed to support them, then your results have an impact – positive or negative — on all three. The reaction upon hearing whatever the news is – good, bad or still unknown — is always emotional in nature. Total joy, crippling sadness and upset, worry, fear, whatever it is – it’s human.
I’m not suggesting you need to know individual names, faces and personalities to align with samples and test results. I’m just suggesting that they be regarded for what they are – the determination of what the rest of someone’s life is going to be. Making that connection would, hopefully, compel the people who are figuring out the answers, the people who work in your labs, want to get it right even more often than they do. How well do they understand that they hold someone’s life in their hands when they arrive at their answers? Could such an emphasis improve the quality and success rates of your results? I realize not every specimen is a life or death situation. I imagine some are as simple as strep throat or some other fairly ordinary malady. Even still, to the person who may not be able to afford the medicine needed to get rid of that strep throat, even that could be a big deal.
There was more, of course…. but that’s the gist.
Bottom line — I am highly appreciative of this opportunity to visit Dr. H’s lab, to observe how their work is done, and most of all to be so gratified that the procedures have been changed and fewer people will be misdiagnosed.
It was a pivotal moment in my career and my life.
