Every Patient's Advocate

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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Your Most Important Health Resolution for 2012

This column first appeared
in the Syracuse Post Standard
January 3, 2012

When considering health-related resolutions, you probably expect me to wax poetic on the virtue of losing weight or quitting smoking.  But no, this resolution actually trumps them both.

Perhaps the most important health resolution you can make for 2012 is to establish a strong relationship with a primary care provider (PCP). Even if you think you already have the best PCP in the world, you’ll want to read on – because that relationship could change.

There are three reasons you must establish or reinforce a primary care relationship in 2012.

1.    Fewer Doctors
The number of primary care doctors is dwindling and practices are changing.  Doctors are aging into retirement, or leaving their practices due to frustrations with the healthcare system. Because fewer medical students are choosing primary care, those vacancies aren’t being filled.  In addition, some doctors will stop accepting certain types of insurance, including Medicare and Medicaid. Others are joining forces to establish larger, less personal practices.

2.    Healthcare Reform
In 2014, when the biggest portion of the Affordable Care Act kicks in, there will be 32 million new Americans with insurance, and newfound access to healthcare. For some, it will be the first time in their adult lives they’ve been able to afford care.

3.    More Older Patients
As baby boomers age, they will need more care, more often than when they were younger. Further, they are living longer than previous generations, so they’ll need medical services longer, too.

Bottom line – a year or more from now, the competition will be fierce.  All those aging baby boomers, plus those 32 million new patients will need to be absorbed by a dwindling number of primary care doctors. After 2012, it may be impossible for you to find a PCP who is accepting new patients.

Thus – an important resolution!  As best you can, think beyond 2012 and what your medical needs may be. If you don’t have a primary care doctor, find one.  If you have one, but you haven’t seen her in more than a year, then visit her before she decides to drop you from her patient roster. If you have a PCP, but you aren’t happy with the relationship, then make a change in 2012, before it’s too late. If you like your doctor, then ask questions about insurance coverage or practice changes, and then make adjustments if necessary.

That’s a New Year Resolution worth keeping.

Here is more information about finding a primary care doctor:

The Shortage of Primary Care Doctors

Finding Dr. Right

How to Decide Whether to Change Doctors

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About.com Patient Empowerment

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The Ultimate Gift – Organ Donation

This column first appeared
in the Syracuse Post Standard
December 20, 2011

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I live in Central New York State, where we are grieving the loss of 17-year-old Taylor Fleming who died in a car accident last week.

In the face of their unimaginable heartbreak and pain, Taylor’s parents decided to donate her organs and tissues, knowing that at least something good could come of her death. They realized their loss, and Taylor’s donation, will help others by extending their lives, or improving the quality of their lives.

Taylor’s eyes will provide sight to someone who has been blind. Her skin will help a burn victim heal. Her lungs may help someone with cystic fibrosis or COPD.  Her heart, kidneys and liver will restore lives. Sixty transplants from Taylor’s body are already benefitting others.

Like Taylor’s parents did on her behalf, we can make the choice to donate our own organs and tissues when the time comes, too – whether we die through tragedy, or from natural causes.

Sadly, despite knowing that tens of thousands across the country are waiting for transplants, too few people consider themselves eligible to donate. You may believe you can’t be a donor, but you are probably wrong.

For example, some people think their religions preclude organ donation.  But no major American religions restrict donation, including Christians, Jews and Muslims.

Some people believe that if they are chronically or terminally ill, they can’t or shouldn’t donate.  But that is also a myth. Your donation may not take place directly to an individual, but your contribution to medical research may ultimately improve thousands or millions of lives.

There are three important steps for you to take if you decide to donate your organs or tissues.  First, sign the organ donor statement on the back of your driver’s license while someone else watches you.  Second, check to see if your state has an organ donation registry (we have such a registry in New York) and sign up to ensure your wishes will be carried out.

Finally, and perhaps most important – discuss your wishes with your family.  Whether or not you can actually donate when the time comes can be decided by the professionals when it happens.  Understanding your wishes will allow your family to have the conversation.

We never know when tragedy will strike.  But we can honor those who have been lost by making the commitment to donate our own organs and tissues upon death.

Learn more about donating your organs, tissues or body so you, too, can give the gift of life.

Note: a reader has reminded me of another excellent gift:  Registering for the Bet the Match bone marrow registry, too.  Learn more.

Here are some additional resources for
end of life choices:

End of Life Decision-Making : The Ultimate in Patient Empowerment

Start an End of Life Wishes Conversation

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