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“Give Us Our Damned Data” Causes the First Meltdown in Awhile


Regina Holliday and Dr. Ted Eytan

Photo compliments of R2DC on Flickr

Regina Holliday’s husband, Fred, age 39, died of cancer in June 2009 leaving his wife, and his two young, beautiful children behind.  During their journey through the healthcare system to try to get Fred the help he needed, too many hurdles were put in their way.  Their story makes you want to scream.

Among the horrors of their journey was the fact that Fred was transferred from one hospital to another – without his medical records. With no records, Fred could not be treated. Regina attempted to get the records transferred, including returning to the first hospital to try to transport them herself.  Instead she was repeatedly stonewalled. Ultimately she was told that she could return to pick up the records in 21 days, and it would cost her 73 cents per page.

None of us can imagine how devastating and frustrating that must have been for her. Fred suffered physically, Regina suffered emotionally.  But today that devastation has become her passion and her mission in life.

Regina is not so much a fighter as she is an artist.  Don’t get me wrong – the girl can fight!  But she fights with the tools only she knows how to use to make her important points.  Those tools are canvas, brushes and paint – and talent that just doesn’t quit.

Even before Fred passed away, Regina began her fight by painting a series of murals on the sides of buildings in and around the Washington, DC area, where she lives.  Her first mural was called 73 Cents.  It’s located at 5001 Connecticut Ave. in Washington, DC.  It depicts some of the many horrible outcomes and experiences she and Fred went through to try to get those medical records.

Since then she has painted other murals, and other paintings – enough to do a showing last week, sponsored (supported by) Clinovations, a company known to us in the empowerment business, but perhaps less known to you.  Clinovations is working to change American healthcare.  They “get” what Regina’s work is all about.

OK.  So here’s where I begin to fall apart.  Please bear with me….

The largest painting is called Give Us Our Damned Data. It features 19 authors (and yes, I’m included — center to the right). All of us have suffered at the hands of the healthcare system, and all of us have written books about our experiences in hopes of improving the system for others.  Here’s a thumbnail version.  You can see a larger version here.

Give Us Our Damned Data!

Photo compliments of Cindy Throop on Flickr

You may recognize a face or two. Each of us is holding a tablet with portions of our book covers.  Each of these folks (Regina lists them all here) is a colleague of mine. Many I have met in person. We support each other, care about each other, stay in touch with each other. We are members of a fraternity that none of us would wish to share with our worst enemies. But we feel so lucky to have each other.

I shed four reasons worth of tears:

1.  I am so proud of my friend Regina for working so hard and sharing her sorrow in such a meaningful way.  I know it’s been a catharsis for her, and I know many others will NOT suffer because Fred, Regina and their children did.  I’m proud to be her friend, and at being included in her wonderful, poignant painting.

2.  I cry for each of the people in the painting.  Each of them has lost someone, or almost lost someone to a heinous mistake, impaled by a healthcare system that is supposed to fix and heal.  Each book is a catharsis, and each author hopes to spare someone else – maybe you – the pain of the loss of health, well-being, trust, and perhaps a loved one, too.

3.  Some tears are post-traumatic stress.  Each time I think about Regina and Fred’s story, mine comes rushing back, too.  Even though I share my story frequently, recounting the facts isn’t the same as facing the emotions.  The fear, helplessness, frustrations – when I first looked at Regina’s painting, I just fell apart.  It’s been a year since the last PTSD meltdown.  But there have been four more episodes in the past 30 hours. I keep thinking it’s getting easier… but… now I’m not so sure.

4.  My fourth reason — strangely enough — is relief.  As I carefully studied each of the paintings in the collection, I was hit with a truth that is so fundamental to all of this.  MY story is the polar opposite of Regina and Fred’s.  They could not get Fred’s records. I GOT MINE!  And that’s the point… !  If I had not gotten mine, then I would never have figured out I didn’t have cancer.  I would have been treated for a disease I did not have.  I would have been debilitated by chemo for no reason. At the end of my chemo, I would have been declared cured of an incurable cancer. But none of that happened BECAUSE I GOT MY RECORDS!

I’m healthy, and happy, and my life has never been better.  And my great revelation is that I am all those things because I was able to get copies of my medical records.  No one stood in my way or refused me copies or tried to charge me for them.  Along with my friend E-patient Dave DeBronkart – we are the poster children for the absolute GOOD that comes from sharing records with patients.

Over the next several years, you will hear discussions about whether patients should be able to access their medical records through the internet, or get copies much more easily than they do today (which, as you can see, isn’t always easy)… please remember this story.  Remember Regina and Fred.  Remember Dave DeBronkart’s and my good outcomes. It’s called meaningful use.  And it’s important.

And then fight your good fight to be sure we can always get those records.  They may save your life, too.

Interested in learning more about Regina’s work?

•  Here is Regina’s blog.

•  Here are Cindy Throop’s photos of the evening’s festivities.

•  Here is Dr. Ted Eytan’s discussion of the showing, including several dozen photos (and larger versions of the one above.) Please notice all the smiles.  Some irony, of course, but the recognition that life does go on, and important work is being done.

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Autism and MMR Link, Parents Fooled, Follow the Money, Then LISTEN

listenI’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?

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Healthcare Reform “Senior Death Warrants” Email Should Be Put to Death Itself

fear

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.

……………………………..

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.

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A Doctor’s God Complex, a Life Nearly Lost

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

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