When last I wrote, I’d been catching up after a whirlwind Fall travel season. And here I find myself catching up after another crazy six weeks…
I don’t just bow out completely, even if it seems so. I’m blogging in other places, like About.com and the AdvoConnection blog, plus I have been promoting my new marketing book, and building three new websites that haven’t even made a debut yet!
So it occurred to me that that’s what I should be doing here at the Every Patient’s Advocate blog is keeping track of all the activities that help me help you. And so it shall be.
I think you’ll find I’ve all but stood on my head!
In these past few weeks, among other things:
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My new book has come out: The Health Advocate’s Marketing Handbook. It’s written specifically for anyone who works in healthcare in a non-traditional career (anywhere from patients’ advocates to acupuncturists, from massage therapists, to counselors, case managers, navigators and more). I’ve learned that most of these folks are marvelous practitioners, but aren’t confident about marketing themselves.
If you work in healthcare, helping others improve their health in whatever way – this book can help you – I promise! Learn more about The Health Advocate’s Marketing Handbook.
An Advocate by Your Side takes a look at private patient advocacy and how hiring a patient advocate can be the smartest move an empowered patient will make.
Be a Tattletale! tells you how to report problems with your healthcare that don’t add up to a lawsuit.
Trust Your Gut to Make Medical Decisions talks about the role of intuition in your decision-making.
Plus I’ve written untold blog posts that have sparked everything from outrage – to big yawns. Among the most inciteful (notice how that word is spelled! – it was intentional):
When it comes to TV and video, Al Roker provides one of my favorite quotations:
“They say the camera adds 10 pounds. OK. So I figure I must be standing in front of 10 cameras.”
Oh, yes, Al. I know how you feel….
However — I’ve decided to come out of my video-avoidance closet to share the following with you all.
First — my excitement at the invitation a week ago to appear on MSNBC to speak to a problem that I actually cited a few years ago – that July is the worst month of the year to be hospitalized. Why? Watch and see!
So that’s the first one. But if I’m going to jump in to the world of video, I might as well do it with both feet. Many of you know that I am brought in to speak at various conferences and meetings across the US and Canada. I enjoy speaking! So in my attempts to do even more of it, I’m told I need to have a professional video made. So, yes, I finally bit that bullet, too, and have uploaded the online version of the opening here.
It’s not like I’ve never done TV before – I have done local TV on a number of occasions. And broadcast isn’t the problem – ferheavensake, I have hosted a radio show for 4+ years! But video, in general, has just always been a step I’ve avoided.
I have been remiss… not posting for two months… and plead the fact that there just are not enough hours in the day! Of course, I’ve kept up with blog posts at About.com - all the commentary about healthcare reform, new hiccups in the system we patients must deal with and more. But yes, this, my personal blog, has been neglected. Apologies.
One of the things that has been keeping me busiest (as you can imagine) is talks about my book, book signings and interviews. It’s been fun so far! So I thought I’d share some links to videos, podcasts and more.
I had fun talking to Dave Bullard from our local NPR station, WRVO about You Bet Your Life! You can listen to the podcast here. You’re welcome to listen to the entire conversation! But if you want to hear just the section about You Bet Your Life, then you’ll find it begins right at 33 minutes and runs a total of 5 minutes.
My chat withKathleen Slattery-Moschkau for her syndicated weekend radio showwas a blast, too! We were able to cover quite a bit more ground than my conversation with Dave — I thank Kathleen for her enthusiasm about You Bet Your Life! Please do listen to this podcast because it will give you quite a bit of perspective about why you must take control of your own healthcare.
Great fun at book signings, too:
At Creekside Books in Skaneateles, NY – great questions from the audience and many thanks to both the owner, Erika Davis and Laura Ponticello from Laura’s List of Books for Women. They made my book launch just perfect!
A big thanks to Marie Kulikowsky from Barnes & Noble in Dewitt, NY for handling what will be two book signings! Yes — in an example of some of the most marvelous timing, the Syracuse Orange NCAA basketball game was scheduled for the exact hour as my book signing (hey! I got there first!) I emailed those on my list and told them we would reschedule the basketball game. Afterall, I have a pretty good sense of what my friends’ priorities are — however — about two dozen people showed up anyway – including friends Leslie Rose McDonald and Cindy Masingill — here are the three of us:
….. and yes…. we have rescheduled for May 6th, 7 PM at Barnes & Nobel, Dewitt.
Thoroughly enjoyed meeting so many people and answering so many great questions at the University of South Florida / Sarasota Lifelong Learning, too. Truly engaged emPatients — a real pleasure.
Centered on Syracuse: How Trisha Torrey found a new career
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So at least you know I haven’t been snoozing…. I do want to sell books, but honestly, I’m making next to nothing on those books. More than that, I want you to be an emPatient, too… it’s important. Especially knowing the road healthcare reform will take us down.
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?
When last I wrote, I’d been catching up after a whirlwind Fall travel season. And here I find myself catching up after another crazy six weeks…
| TIPS
— however — about two dozen people showed up anyway – including friends Leslie Rose McDonald and Cindy Masingill — here are the three of us:
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.
