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Archive for August, 2008

Daniel’s SPTCL Diagnosis is Suspect, Too

When I was (mis)diagnosed with SPTCL (subcutaneous panniculitis-like T-cell lyphoma) in 2004, I was handed a book, published in July 2004, that stated that “fewer than 100 cases have been reported in the last decade.”

Yeah — really, really rare. Because that’s a book used by oncologists all over the world.

Then, from Fall 2004 through May 2008, I heard from only two other people dealing with SPTCL diagnoses. One was a husband of a woman diagnosed. One was the friend of a person diagnosed. I never heard back from either one, so I don’t know their outcomes.

You can imagine then, however AMAZED I am, that I have now heard from three people diagnosed with SPTCL in the past four months!

Heather — we worked together and proved she had been misdiagnosed, too. You can read her story on my SPTCL page.

Cynthia — who has struggled and been treated for her SPTCL for two years or so.  Here’s her story in her own words.

And now Daniel — a 15-year-old boy whose mother, Sonia, contacted me. Daniel’s diagnosis is HIGHLY suspect, like Heather’s and mine. She’s still in the process of chasing down more details.  You can read the latest on Daniel here.

The point?  We are developing a community of people who can offer information — and hope — to others who have just received a devastating diagnosis, and are reaching out to others.

You can do the same!  No matter what your diagnosis, you can look for other blogs that address it, or set one up yourself.  Share information,  Vent.  Ramble.  Get angry.  Help someone else — the most important part.  We’re all in this healthcare thing together, you know.

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Never Events — Shooting the Messenger

Beginning October 1, 2008, Medicare, and many health insurance companies, will no longer pay hospitals for the additional services needed for patients who suffer from “never events.”

Never Events, as defined by the National Quality Forum, are those events which should never happen to a patient.  There are 28 errors on the list ranging from wrong site surgeries to drug errors to crimes committed by medical professionals.

Not included on the list from the NQF are HAIs (hospital-acquired infections).  There may be many reasons for this, but there are many groups and organizations that believe HAIs like MRSA, C.Diff and VRE SHOULD be included on the list.  Many of them, although not all of them, are preventable.

Regardless of what the left hand is doing (NQF), the right hand of payers (Medicare and many insurers) have decided that these infections will no longer be covered.  That means that any hospitalized patient who contracts, or at least presents with, an infection during a hospital stay may not be charged for the extra cost of treating the infection, nor will the hospital be paid by Medicare or many of the health insurance companies.

I don’t have the expertise to say whether this is right or wrong.  On the one hand, I believe it’s absolutely necessary to force hospitals to figure out ways to decrease the numbers of patients who contract these infections, estimated to be upwards of 5 million patients per year.

On the other hand, I know that sometimes patients arrive with pre-existing infections that may be apparent when they are admitted.  Can they be tested upon arrival?  Of course they can — although some hospital personnel point out how expensive that is, and that insurance won’t cover that either.  I have no doubt that there will be some problem for patients that crops up from this new ruling.  Hospitals will refuse to admit patients at risk, or they will discharge them too early so they can — at least in the paperwork — ignore an infection just as it begins.  Hospitals will do whatever they need to to protect their *sses — and it will be at the expense of patients.  Unintended consequences, all based on money.  What else is new?

During the past few days, a dialogue has taken place… wait… make that a diatribe…. on the blog of a certain “buckeye surgeon” where complaints and barbs have been thrown at a newspaper reporter who wrote about this October 1 date for reimbursement stoppage.  On just about the same day, the Wall Street Journal printed an article by Dr. Betsy McCaughey, founder of RID (Reduce Hospital Deaths) that gave some statistics about hospitals that have addressed infection problems — and have successfully reduced their numbers, one (claims) to 0 patients over a span of years.

So –I pulled some quotes from Dr. McCaughey’s WSJ article and posted them to the blog — and you would have thought I was the devil-incarnate…. whoa!  A regular lightening rod!  All those doctors so quickly turned their ire on me.  And I thought angry patients got worked up!  They can’t hold a candle to posters like “white coat” and “anonymous” who — God forbid — don’t even use their real names.

No — they attacked me one after the next.  In fact, it began when I suggested that SOME hospitals were actually trying to help patients!  SOME hospitals are actually asking their doctors and personnel to adhere to a checklist that — (you won’t believe this) — actually prevents infection!

Oh — one even attacked me for not being grateful that I was misdiagnosed with cancer.  She told me I should not have been upset at the misdiagnosis — I should have been relieved that I didn’t have it.  (My standard reply, which I didn’t bother with is — “gee — you didn’t get hit by a car today.  Are you relieved and grateful?”)  Of course — what on EARTH does this have to do with infections?  I’m not sure.

What’s the bottom line?  What can we learn from this?  Honestly — I do NOT believe that including HAIs on the list of never events Medicare and some insurances will no longer pay for was the right approach.  While some infections could have been listed and it would have been helpful, instead I think Medicare has only thrown down the gauntlet for hospitals to go underground.  Patients will pay the price in even worse health problems.  We must be more vigilant and be prepared to stand up for ourselves and our loved ones, and once October 1 rolls around, that will be even more difficult.

What the Trisha-bashing on the Buckeye Surgeon’s blog has shown me is that when we patients begin to stand up for our NEED for decent healthcare, we become the enemy.  The point I tried to make on a couple of the blog posts was that I think patients and providers need to remember that we have the same goal — improved patient care.  But those folks didn’t want to go there.  They just wanted to bash me.

I pray none of them is ever hurt by a medical error.  I hope none of them ever suffers at the hands of a medical practitioner who is probably just in a big hurry because he doesn’t get reimbursed well enough for his work.  I hope they don’t lose a loved one, like I did, after she acquires MRSA.

But mostly I hope they will stop taking their frustration out on the messenger.  Afterall — excuse me — I THOUGHT we all had the same goal?

Don’t we?

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Ulterior Motives for Eating Disorders, Too

I had lunch today with a long-time friend, Mindy.  (No, of course that’s not her real name…) It’s been at least a year since we saw each other, and probably two since we had a long conversation.

My heart broke as I learned that her daughter, Lindsay (not her real name either) has, for lack of a better description, gone right off the deep end.  I’ve known Lindsay since she was only 11 or 12 — a bright, articulate and curious adolescent.  In more recent years, I knew Lindsay had developed eating disorders.  She is anorexic and bulimec, and is almost 18 years old.

Lindsay’s eating disorder is only one in a long list of problems she has acquired during the past few years.  She has abused drugs, has been in trouble with the law, and is dealing with some other mental health issues as well.

Her mom, Mindy, has struggled to do the right thing, but of course, as parents, we never really know if we are doing the right things by our children.  Mindy shared some aspects of how they have tried to help Lindsay.  Her findings sounded remarkably like some of the advice I share with you on occasion.  It bears repeating, with this different light.

At one point, Mindy contacted programs for girls with eating disorders.  There are at least four of them within 150 miles of where Mindy and Lindsay live. Some are day programs.  Others are residential programs.  Mindy contacted them all — in fact, visited them — and learned that each one happened to be exactly the program Lindsay needed!

At least, that’s what they each told her.  Each program was different, using different approaches to treatment, but according to the people who ran them (and, do I need to add, the people who would be paid by Mindy’s insurance if Lindsay attended their program?) each of their programs was just right.

This should sound vaguely familiar.  I’ve blogged before about doctors who advise us about treatments, but may have ulterior motives for their recommendations. My misdiagnosis odyssey was my first experience with this.  I accused my oncologist of insisting I begin chemo because it was the only way he could make money from me.

My friend Max was told he needed prostate surgery and he should undergo a minimally invasive procedure.  After studying options on the internet, he learned that an even less invasive, and less trying form of surgery using a robot might work even better.  So he asked his surgeon about it, and was told that NO, he certainly didn’t need to have the robotic surgery…. then learned later that the surgeon he was asking didn’t know how to do the robotic surgery.  Hmmmm…..

The literature is rife with examples of doctors making money, sometimes discreetly or even under the table, from the treatment recommendations they make.  Whether they are investors in specific medical device manufacturing companies (think artificial body parts) or drug prescriptions (think subsidies from pharma drug manufacturers) — the recommendations being made to you may have more to do with lining a professional’s pocket than your treatment success.

One disclaimer here — I do not believe a doctor would knowingly recommend a treatment that would harm you just to make money.  But, I do believe there are times when, all else being almost equal, the first consideration would be money, followed by your success or with little regard to the expense to you.

For example, if you had a history of knee pain, your doctor might recommend your knee be replaced today, even though therapy might help you for another year or two.  Of course, he wants to replace it using the brand that pays him a kickback fee.  But you don’t know that, nor does your insurance.  And don’t forget, most of these artificial joints have a shelf life — meaning — if you get one two years earlier than necessary, you will need a new one two years earlier, too.

It seems to be true enough in healthcare — whether we are talking about brain surgery or eating disorders — that we need to find someone who can help us consider the evidence much more objectively.  That means we either have to find someone who can help us with all the options, or — even preferably — someone who won’t handle any of the options.  In Max’s case, he was able to find a surgeon who did both the minimally invasive surgery AND the robot surgery.  He told Max the robot would serve him quite well.

And in Mindy’s case — she was able to find an advisor in anothor city who had no ties whatsoever to any of the available programs — one who knew all about the other programs in that 150 mile radius, and who was able make a recommendation based on that knowledge.  The advisor wasn’t in a position to benefit her own program, so she was able to make a more objective recommendation.

Let’s learn from both scenarios.  If you are in a position to need difficult, invasive or long term treatment, make sure you get at least a second opinion.  Then find someone who either can provide you with ALL the choices, or someone who doesn’t have a stake in ANY of the choices to help you get more objective advice before you make your final decision.

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