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Sometimes It’s Better to Just Say No

Story One: When I was a child (and we’re talking a lo-o-o-ng time ago – when doctors made house calls)… if I got an earache, I would suffer.  REALLY suffer. Mom would drip some warm oil into my ear, and then stuff some cotton in behind it. She’d give me an orange flavored baby aspirin or two.  And I would just lie in bed, or on the couch, miserable.  MISERABLE.  Seems like I would sleep a lot. Two days later, my earache would be gone, and because I was a kid, and resilient, I would be back on my feet.

Story Two: When I was a kid, I fell off my bike as I flew around a corner near my house.  My bike flew off in one direction and I flew in the other, and landed smack on my elbow.  OH THE PAIN!  I pulled the cinders out of my arm, and cried all the way home as I dragged my bike with me.  That evening my dad walked me across the street to see a doctor who lived in our neighborhood.  He felt along my arm, moved it around a little, declared that I had sprained it, then put my arm in a sling where I was expected to keep it for the next few weeks.

Perhaps it’s miraculous that I survived childhood!  But I don’t think so.  I think any of us over a “certain age” had very similar experiences as a child.  We all had sore throats and earaches, we all sprained and broke bones – and we didn’t have the miracles of modern medical care to help.

Fast forward to today.  Today when we go to the doctor, no matter what the complaint, we are met with a barrage of tests, procedures and treatments.  If I had a sore throat and an earache in 2012, I would likely be given a strep test (chi-ching!) and prescribed an antibiotic (chi-ching!)  If I fell off my bike in 2012, I would be given at least an X-ray (chi-ching!), but more likely a CT scan.  I’d be prescribed an antibiotic (chi-ching!) and maybe even a pain killer (chi-ching!)  I’d need follow up testing to see how well everything was healing (chi-ching!)…

Bottom line – healthcare is so much more expensive today because we do things that we don’t necessarily need to do.  We are herded into services that we don’t necessarily need.  And (shame on us) we ASK for things we don’t necessarily need and probably shouldn’t get.

Don’t need?  Shouldn’t get?

Antibiotics, the miracle drug of the 80s and 90s, were so overprescribed that today the bugs they were intended to kill have evolved into superbugs. People die from acquiring infections that didn’t become problematic until the overuse of antibiotics.  Yet – mom takes her child to the doctor with an earache and insists an antibiotic be prescribed for her child.  Two days later, the child is no longer in pain.  (But is that any improvement over the two days it took me to get past my earache 50+ years ago?)

The existence of CT scanners, MRI scanners and PET scanners, and the need to pay for them, compel doctors to order those tests, even in cases when they may not be necessary.  Of course there are times when they are very necessary – but not always, and not as often as they are used now.  When it comes to so much extra scanning, it can create big problems for our health (too much radiation exposure from x-rays or CTs) AND our wallets – imaging is expensive, even when we have insurance.

So how can we know the difference?  How can we be a bit more savvy when it comes to test and treatments, whether or not they are suggested by our doctors?

Last month, a consortium of nine different medical specialties – the very doctors who make money when we have tests and treatments – came out with their lists of tests, treatments and procedures we patients don’t need.  They listed them all on a website, called Choosing Wisely.

If these doctors don’t think we should take these tests, then why would we have them?

What we know is that this elite group has made these recommendations.  What we don’t know is that those recommendations will filter down to the doctors who order these tests, treatments and procedures – because that’s how they make their money, and (they think) that’s how they can defend against lawsuits.  (We can only imagine how unhappy that orthopedist who makes his living running CT scans is with his own peers that tell patients not to get so many CT scans.)

So, knowing that our doctors may not be aware of the lists, or may have chosen to ignore the lists, it’s up to us patients to ask questions.  “Doctor, If I take this antibiotic, how soon will I feel better?  How soon will I feel better if I don’t take it?”  — or — “Doctor, I know an X-ray is much less expensive than a CT scan.  What will a CT scan tell you that an x-ray won’t?  Can I have just the x-ray?”

So yes, fellow empowered patients, it’s time for us to begin making smarter choices, both for our wallets and for our health.  Make yourself generally aware of the new recommendations of tests, procedures and treatments you just don’t need.  Understand that leaders in healthcare who understand about reining in costs, even if they are the ones who lose income, are calling out to their peers to make changes in their recommendations….

Unfortunately, anything in medical care takes a LOT time to implement.  But this is something we patients can do – and do with no detriment to our health OR our wallets.
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True Confessions – My Take on Health Care Reform

Last week we watched (or more likely heard summaries during newscasts of) the Supreme Court’s (SCOTUS Supreme Court of the United States) hearings on American healthcare reform (AKA The ACA, Affordable Care Act.)  For those of us engaged in health-related issues every day, it was fascinating to watch the transition, and the voices of pundits, from “they will” or “they won’t” or whatever that day’s interpretation was.

Watching this culmination of many years of reform efforts has been fascinating to me. And in the midst of it, I realized that many of my regular readers have probably made assumptions about my take on healthcare reform that may not be true.  So yes, today it is time for some true confessions.

First Confession:  I am a registered Republican and, for many aspects of politics, (economy, defense) a conservative. I am, after all, a small business owner. It would seem, then, that I would be against reform of the system.  However…

As someone who has been personally buffeted by the system, during a time when I was insured (meaning responsible), the conversation held special interest to me.  Because, despite the fact that I was insured, and even though my diagnosis was wrong, I still lost my life savings (all except my house and my retirement).   So as you might imagine, beginning when the 2008 presidential elections began to play out in the media, I was immersed in the questions and arguments about healthcare reform. It was highly personal.

As a result of my conservative business nature, combined with my in-the-trenches understanding of how the healthcare system works in the United States, I was truly conflicted!

In those days, I did a lot of speaking on the subject of healthcare reform.  I believe so many invitations came along because I established a reputation of being able to see and argue all sides of the argument.  Perhaps because I was so conflicted, I could switch sides at the drop of a hat, and plays devil’s advocate no matter what the argument.  I would challenge my audiences to see if they could determine whether I supported reform or not – and rarely could they tell.

Second Confession:  Even though I could intellectually understand and argue why big business “had to do what it had to do,” I never could reconcile in my heart that the current non-reformed system is geared to only the “haves.”  The current system is very much about making sure the have-nots (or choose-nots) cannot access care except through emergency rooms, or by going bankrupt. Period. It’s very elitist – all about controlling those who can’t afford care and making sure they get sicker and die, while reserving decent care for those who can afford it.  And THAT is not me.

And that is not me MORE than the capitalist conservative IS me. And so yes, despite the fact that the ACA is highly flawed, and despite the fact that it requires many changes to make it work well, and fairly, I believe that we must start somewhere and so, yes, I am in favor of the ACA and hope it remains the law of the land.

Fast forward to today – two years post passage of the ACA, and a week past Supreme Court arguments, and…

Third Confession: I am less conflicted than I was then.  Why?  Because in these five years after the arguments have begun, I have seen Americans pay attention to aspects of healthcare they have never paid attention to before. Even if I still heartily disagree with those who are against reform, I know that they are seeing the fruits of what has taken place so far.  Maybe they had pre-existing conditions and, for the first time, have been able to find insurance again. Maybe they have a 23-year-old college graduate who still can’t find a job, but could stay on their family health insurance policy. Maybe they are seniors who have found the donut hole shrinking.  Whatever the reason, at least we as American citizens are engaging in the decision-making process – even if some are on opposite sides from my own thinking.

Fourth Confession:  I am totally confused (and hope someone can enlighten me) on why on earth conservatives want to shoot down the individual mandate.  Their arguments against it just don’t make sense!  Republican conservatives are all about personal responsibility, and so many of the arguments against reform have been aimed at problems that have occurred before now because people don’t take responsibility for making sure they have health coverage.  The individual mandate is what makes “lazy” people (the ones who are working six jobs, none of which offer health coverage), and “poor” people (the ones who have been laid off because of Wall Street greed), and young people (the ones who are bulletproof and won’t ever get sick, so would rather buy stuff than invest in health coverage) get coverage.  The individual mandate is what prevents those who run up their costs beyond what can ever be repaid (today) not have to file bankruptcy because – well – they had coverage. The individual mandate is what controls costs for the rest of us who HAVE been responsible.  So – WTH?  I just don’t get that.

And finally, my

Fifth Confession:  (I have confided THIS confession only to my closest friends before today.) Personally, and in a selfish way, it doesn’t matter to me what the Supreme Court decides.  Because no matter what the Supreme Court decides, I and my loved ones, will be just fine. Whatever their decision – it’s job security for me.

The Supreme Court’s decision won’t affect my ability to be insured because my husband is retired from the military, so we have decent coverage for our lifetimes. Our children are all well-employed in jobs that won’t go away, so they are in good shape, too.

No matter what SCOTUS decides, Americans will continue having trouble getting what they need.  I predict that if the ACA is blessed by SCOTUS, then there will be more confusion in the short term, but less confusion in the long term.  And if they strike it down?  Well then, my fortunes will multiply because my career is all focused on either helping individuals get what they need from the system, or helping them find a health advocate to guide them.

Which, of course, goes back to my original statement…. that is…. I’m a business owner and a Republican.  I’ll just continue to grow my business.  And that creates one heckuva circular argument – don’t you think?

So there you go – my five confessions about healthcare reform.  They say confession is good for the soul.  While I’m not sure this has done much for my soul (because it certainly doesn’t resolve any of my personal conflict!), I do hope it has given you some food for thought.

…MORE…

•  Where Does Rationing Fit Into Healthcare Reform?

•  What Is Socialized Medicine?

•  What is Universal Healthcare?

•  Where Does Rationing Fit Into Healthcare Reform?

•  Follow the Money: How Money Affects American Healthcare

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A Tutor Who Tooted the Flute…

In a conversation with a friend the other day, I was explaining the need for patient advocates (which she got immediately) – and the “tutor tongue-twister” came to mind.  Do you know it?

A tutor who tooted the flute,

Tried to tutor two tooters to toot,

Said the two to the tutor, “It’s tougher to toot, than to tutor two tooters to toot!”

Now – you may wonder what tooting tutors have to do with patient advocacy.  And yes, I’m going to tell you….

When I explain the role and benefits of having a private patient advocate help you when you’re sick (or a loved one is sick), sometimes people don’t understand why they would want to reach into their pockets to pay for someone to help them get the healthcare they deserve.  After all – healthcare has always been free, right?  (Well – free PLUS the cost of premiums PLUS the cost of co-pays PLUS the cost of services not covered, etc….  )

So – my new metaphor is that of a tutor.  If your child is struggling to pass trigonometry, and you know his ability to go to the college he wants to go to (or you want him to go to!) is dependent on whether he will pass trig, then you have the sense that it’s not just about trig – it’s about the quality of the rest of his life.

He goes to public school, which is free, just as healthcare is free. (We pay for schools in our taxes like we, or our employers, pay for healthcare with our policies.)

He has stayed after school for extra help (still doesn’t get it), your sister-in-law the math teacher can’t seem to help him (like many hospital advocates or websites might provide some help), he won’t let you help (caregivers find it so difficult to manage their loved one’s healthcare) – but he still doesn’t understand trigonometry.

So now what?  With his future so dependent on getting past this one, very difficult hurdle…. what are you supposed to do?

You hire a private tutor.  Someone who can work one-on-one with him. Someone who knows some of the inside information needed to get him past the final exam.  Someone whose sole purpose is to make sure your son passes trig – because if his work with your son is successful, then his tutoring business will continue to grow, too…

Someone who will make sure your son has the quality future he deserves, despite the fact that the “system” (meaning, in this case, the school system) just isn’t providing the way your son needs it.  And for that, you will happily pay from your pocket – because it’s that important.

Which is exactly what a private advocate does – provides you or a loved one with the quality future you deserve, making sure you get what you need from a system that is too dysfunctional to provide it.  A private patient advocate is only interested in making sure YOUR interface with the system works well, that you get exactly what you need, whether what you need is the right diagnosis, the right tests, the right treatment – or even medical bills that are no more than they should be, or must be.

… A patient or health advocate will help you navigate the health care system to get the quality future you deserve, despite the fact that the “system” (meaning, in this care, the healthcare system) just doesn’t provide you with the real help you need.

And more…. there are dozens of ways a patient advocate can assist you.

This week is Private Professional Patient Advocate’s Week.  Whether or not you are struggling with your medical care, you will benefit from having a private health or patient advocate to lean on, and to bring you through it.

…making sure you get the quality and quantity of future you or your loved one deserves.

(Now – say that three times fast!)

…MORE…

Find a Patient Advocate to Help You

How to Interview and Choose a Patient Advocate

Why a Private Patient Advocate May Be the Answer for You

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Who’s Really a Patient? Skewed Opinions Result from Inside Information

That seems like a fairly simple question, don’t you think?  Who really is a patient? But the answer is actually more complex than you might realize.

Among the possibilities:

1.  anyone who has ever accessed medical care is a patient – which includes everyone, no matter what their relationship is to the healthcare system (so, for example, doctors would also be considered patients, as would any other provider, or even payers like insurance company employees, or pharma employees, etc.)

2.  anyone who has accessed medical care, but doesn’t have inside knowledge of the healthcare system, is a patient

By dictionary definition, the answer is #1: that anyone who ever accesses medical care is a patient.

But when it comes to defining a patient’s perspective, his or her point of view, then the answer is not so cut and dried.  In my (not so) humble opinion, a medical insider cannot possibly truly understand a non-insider patient’s point of view about their healthcare experience.

Here are some examples:

  • When a doctor, nurse or other provider finds troubling symptoms,  s/he doesn’t just make an appointment, then wait for days or weeks like the rest of us do before we see a doctor.  S/he calls a friend and gets in to see him or her right away.  So – what is that patient’s perspective?  Is the point of view going to be the same? No.
  • When an insurance company employee needs a medical test or payment for a claim, s/he knows from the inside how to get it taken care of.  Is that the same perspective as someone who struggles to get those services?  Is the point of view the same? No.
  • When an insider, who is getting paid under the table for prescribing certain medications or is rewarded by a medical device manufacturer for using that company’s devices (think artificial hips and knees, or spinal fusion material, etc), is asked about the cost of care, they can’t see it the same way as the patient who needs that new hip and doesn’t have insurance.  Do they have the same point of view about their needs?  No.
  • When a popular doctor has surgery in his own hospital, in a private room, where the nurses respond quickly to the call button (because he IS one of their favorite doctors!), and is then discharged with no infection, do you think his perspective can be nearly the same as a Medicaid patient treated in that same hospital?  Yet – they are both patients in that hospital.
  • When the director of the “National Cancer Awareness and Prevention” charitable organization, the majority of whose budget is underwritten by a handful of pharmaceutical companies, is asked to represent patients on a conference panel to discuss the development and cost of cancer drugs, how objective can her opinions be?  Does she dare step on those pharma company toes by saying what a ‘real’ patient might say?

The subject came up most recently when yet another large, influential healthcare organization decided to hold a “patient and caregiver” forum to discuss “patient-centeredness” – and yet, once again, there were no non-medical-care-industry patients included as expert speakers.  Seriously.

It also reminds me of the many times I have approached healthcare conference planners, offering my speaking abilities, representative of that important patient point of view… and they were not interested.

Their response?  “We are all patients.”  (See #1 above.)  But if what they are trying to do is help patients – well – wouldn’t it be a good idea to ask a patient who isn’t an insider to chime in? Evidently not. They only wanted speakers who were from their industries.

Put another way:  it would be like GM or Honda designing cars without ever asking the opinions of car buyers, or JCPenney only selling size 4 dresses because they never assessed gender or the sizes of their shoppers.  They would swiftly go out of business….  which, of course, doesn’t happen in healthcare because we “consumers” (I hate that word in healthcare) don’t vote with our feet.

I think we need a way to make the distinction. If we are all patients – then what can we do to distinguish between those who do, or don’t, have a “real” patient’s point of view?  Are we, as non-insiders, “pure” patients?  Or are we “unencumbered patients?”

Or, maybe we do the opposite, and use a term to describe those patients who are insiders.  Maybe we call them “industry patients” or “insider patients.”

Or – maybe I’m missing the boat entirely….

This matters. It matters because when non-industry-insider patients are expected to be the representatives of a non-medical-industry-insider’s point of view, that point of view, and the results, get skewed.

And for us patients who don’t live inside the medical industry:
Skewed = Screwed …  In more ways than we can count.

What do you think?  Do you see the distinction?  While we may all access medical care, do you agree that our points of view are different?  What do you suggest we do to help the medical care industry understand and embrace the difference?

Please provide your 2 cents below.

…MORE…

Patients – The Invisible Stakeholders

The Myth of “Doctors Are Patients, Too”

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Why Rob a Bank When You Can Make More Money by Counterfeiting Drugs?

Want to make millions of dollars quickly while risking only a few months in prison if (and that’s a big IF) you’re caught?  It’s not difficult at all. Just set yourself up as a distributor of counterfeit drugs in the United States.

This week’s announcement by the FDA that a counterfeit version of Avastin, a chemotherapy drug that is used for several kinds of cancers and tumors (lung cancer, kidney cancer, colon and rectum cancers – but no longer for breast cancer since approval was removed last year) has been found across the country, infused into the national drug supply, raises plenty of questions about how that could possibly happen.

It was followed by an interesting article in USA Today which partially answers the question.  Counterfeiting is a multi-billion dollar business that is on the rise because it’s so lucrative, and because the penalties are so… well… inconsequential.  I mean – would you be willing to spend no more than six months in jail if you could make millions of dollars for use when you got out?  (Even if you would answer no! I don’t want to go to jail!…  I’ll ask you this…. what if your child had treatable cancer and you had no insurance?  Just sayin’ …)

Avastin isn’t the only drug that may be counterfeited.  Any high cost drug that can be watered down, or manufactured to “look” right even if it is manufactured without its expensive ingredients, is a target for counterfeiters.  Lipitor and Viagra are probably the most apt to be counterfeit, but others like drugs used to treat HIV and AIDs, or diabetic drugs, or weight loss drugs, are likely targets for counterfeiters, too.

So what happens if you are somehow treated using a counterfeit instead of the real drug?  Maybe nothing. Or maybe you die. Or anything in between. The problem is, for the most part, we patients have very few ways we can detect whether a drug is real or fake.

Katherine Eban, in her book, Dangerous Doses, tells the stories of people who died from receiving infusions of counterfeit Procrit.  The conventional wisdom on this most recent discovery of fake Avastin is that there was nothing in the counterfeit version that was dangerous, and it’s difficult to tell within a regimen of 18-20 doses a cancer patient might receive over six months whether one “missed” infusion of the active ingredients has a long-term effect.

The bigger picture problem is that our drug supply is not being well enough protected by the FDA, which is tasked with protecting us. The FDA has no backbone when it comes to protecting us from bogus, counterfeit drug distributors who appear to be selling “real” drugs, but target greedy doctors, pharmacies and hospitals that are so willing to buy “discounted” drugs for their patients, knowing that there will be more profit in their reimbursements.  Experts estimate that about 1% of our drug supply is counterfeit.  That means that 1 out of every 100 administered drugs may be counterfeit, too.

One answer to this is an electronic pedigree system, meaning, from the time the drug is manufactured, until it is given to the patient, it is followed and logged using a bar code type system. If such a system was in place, then even us patients would have a way to double check that the drugs being given to us are the real drugs they are supposed to be.

So why doesn’t the FDA insist on the development of such a system?  Well, actually, they have. But again, they have no teeth, and so far, no backbone.  Every time they raise the issue, the drug companies and drug distributors begin to wail about the added cost to the system.  (Surprise!  Follow the money!)  And so, nothing gets done.

Like other issues in healthcare, it looks like little will happen to improve this system until something horrible befalls someone famous; someone who can actually override the special interests in Washington and insist on development of this electronic pedigree system.

Until then, here is information to help us patients do what we can to protect ourselves from counterfeit drugs.

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