Archive for the 'New Ideas in Medicine' Category

Patient Advocates: We Need You!

I’ve been away from life-as-usual for awhile.  It’s been a roller coaster:  from the lowest of lows losing my mother-in-law to ovarian cancer (you can read more about the problems with treatment here)  to the highest of highs — having our four kids and their families visit from all over the country.  I’m ready to return to some normalcy!

Having closed up my computer and ignored email for several days, I returned to hundreds — literally hundreds — of emails.  I was able to delete the first 300+ — spam, of course — and now I’ll deal with the 100+ that still require replies or some sort of action.

Among them are a dozen requests for contacts with patient advocates.  They are from all over the country:  St. Louis, Missouri;  Lewisville, Texas, Northern California, and many other places — and I can’t help.  Frustrating, frustrating, frustrating. 

This brings to light a real problem which I’ve found much of organized healthcare wants to ignore.  The two biggest complaints I hear from patients both fall into this healthcare hole. 

The most prevalent complaint is that someone has seen several doctors, had several tests, perhaps at different testing centers, and there is no one to put all the information together to arrive at a conclusion.  There’s no umbrella person.  No conductor of their healthcare symphonies.  Whereas we would think their primary care physician would oversee that, sometimes the referrals are daisy-chained;  that is, one doctor sends them to the next, sends them to the next, etc — and no ONE person can help them put it all together.

The next biggest complaint I hear is from the person who just can’t get diagnosed with anything they can get their arms around.  Symptoms get treated, but problems persist.  They get sent to specialists, none of whom will talk to each other, and no conclusions are reached.

There is a real need for people who can help translate this information for patients — who are they?  I know is some places they are called “caseworkers” — but the bottom line is that I can’t find them to refer them.

If you are a patient advocate, or if you know a patient advocate — please contact me.

Next steps:  beginning to put together educational programs for those who would like to study patient advocacy as a career.  Are you interested?

OK — back to answering all this email!  I did find one fun one — a voice from my past, a fellow Bucknell University, Class of 1973 graduate.  (Hey Bev.  I’m so pleased to hear from you!)

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Why Sicko is Only the Tip of the Iceberg

Some final points about the health insurance industry — a few steps beyond Michael Moore….

Private — even not-for-profit — health insurance companies exist in this country for only one reason — to make a profit and to line the pockets of their employees. 

Hear me out…

They are businesses FIRST, many with investors to please, and as such, that is their requirement — to make money.  No matter what the business is, no matter how they do it, their number one vision, mission, goal, is to make money for themselves and their investors.  It’s no different than a pizza vendor or the power company or the state lottery.  Making money is their only reason to exist.

What that means is that the amount of money coming IN, must at least exceed, and at best FAR exceed the amount of money going out.  Even for the so-called not-for-profit health insurance organizations, they must bring in much more money than they spend, because their executives are making six figures — and sometimes more.  It could be the organization is considered not-for-profit, but that doesn’t mean they have paychecks that are anything less than those of their colleagues across the industry.

The only way they make money is by charging their customers — we patients and our employers — more money. 

They want us to believe that their costs are skyrocketing because the hospitals and doctors and pharmacists and other providers are charging them more — BUT — that is only partially true.  In fact, they tell the providers what they will pay — not the other way around!  Are we patients getting any sicker?  As a group — no. 

And don’t forget — on top of all that profit, they must continually pay out the expenses of lobbying state and federal legislators, not to mention donating to their campaigns…. and yes, that gets more expensive, too.

So think about it this way, taking a stab at the healthcare dollar you and your employer are giving the health insurers: 

  • a percentage is being paid for executive salaries, bonuses and perks
  • a percentage is being paid for administrative costs
  • a percentage is being paid for lobbyists and campaign contributions
  • a percentage must be kept to make investors happy
  • and then, whatever little is left over actually covers a PORTION of your health care.

Frustrating, isn’t it?  What’s wrong with this picture?

Here’s another way of looking at it:  in the health insurer’s perfect scenario, we pay in and pay in and pay in for as long as we stay healthy — then as soon as we get sick, they would just as soon we die.  Once we die, then they don’t have to pay out for our care!  Especially for those with chronic diseases, or something that needs newly developed treatments or surgeries — either we are uninsurable, or if they are already stuck with us, then we are denied care.  I suppose denying us service might be the only better scenario than letting us die.  At least then they don’t feel like our blood is on their hands.

Is it any wonder they employ people (like the guy in Sicko) who do everything they can to uncover reasons not to pay out?  Is it any wonder why they refuse to pay for “experimental” treatments? 

This is not about the human thing to do.  In fact, allowing these health insurance companies to make decisions about what care they will — or will not — allow to their insurance customers is simply providing them with a license to kill.  The more of us who die early, the more money they will make.

Does all this sound a bit extreme?  Well, OK.  Then tell me what I’ve missed? 

Now do you understand why being a sharp patient is so important? 


Read two more posts about Sicko:

A Patient Advocate’s Reaction to Sicko
What Sicko Doesn’t Tell Us

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A Patient Advocate’s Reaction to Sicko

…. is that Michael Moore has only exposed the very tip of the dysfunctional American health care system’s iceberg.

As confessed in yesterday’s blog post, I’ve never been a fan of Michael Moore’s.  I think his previous works have been inflammatory and one sided.  Not that he doesn’t raise awareness of issues, and not that he doesn’t cause dialogue that is helpful, because he does.  Rather, because he takes facts and bloats them, and his audience walks away believing partial truths.

But for Sicko?  He is inflammatory, and if I worked for a health insurer, I’d want to hide.  And if I were an executive for a health insurance company, especially the “medical director” of a health insurance company, I would be embarrassed beyond belief. 

But as far as whether his presentation was balanced — well — his story was no more unbalanced than reality.  The reality of what healthcare in the US has become is so lopsided, that it’s falling into the deep unknown.  If it’s any indication?  I’ve never attended a movie that elicited applause, not just at the end, but in reaction to statements made during the movie, too.  And whereas many had told me I would laugh, and on occasion, I did — but — I left with tears in my eyes.

I learned a few things, which I will present to you, although I have not yet confirmed them to be absolutely true.  The scary part is, even if they are only half true, then they are still worth noting. 

For example:  one woman who used to be a health insurance sales person spoke of a 37 page document of “pre-existing conditions” which would automatically cause denial of coverage to an applicant.  Another woman described how executives in health insurance companies get paid:  the higher the rate of denial of coverage (not just in policies, but in pre-approvals for treatment), the higher the bonus.  “Payment of any claim,” she explained, “is defined as a medical loss.”

One gentleman explained his former job as a health record spy — in effect, if someone made a claim the insurance company didn’t want to pay, it was up to him to comb through the previous medical records of the patient and use anything at all — ANYTHING — to create a case for denying a claim.  Of course, the insured has no recourse.  None.  (By the way — this is a perfect reason for making sure your medical records are always correct.)

I’ve often wondered if there was a watershed moment in American history that caused the previously considered “good” system of healthcare to go awry.  Moore explains it as a Nixonian decision.  In 1971, then president Richard Nixon and his buddy Edgar Kaiser (of Kaiser Permanente fame) created a new approach to healthcare where denial of service became a profit center.

And then there is Moore’s statement that there are 4 times as many health insurance lobbyists in Washington as there are congress members.  Can you guess who is paying for those lobbyists?

The last example of what I learned (although there is really quite a big more) is that Moore visits Canada, Great Britain, France and even Cuba, and claims that in those countries, where healthcare is a given, paid for by taxes, then provided at no additional cost to its citizens, people live 3 or 4 years longer than Americans on average.  Even the Journal of the American Medical Association cited those statistics.  In England, doctors earn more by keeping their patients healthy, too.  Amazing.

So here are a few comments from your friendly patient advocate — now that I’ve had a few hours to think it over:

1.  While Moore did a good job pointing out the foibles of our system as they relate to how medical care is paid for, he didn’t even attempt to talk about medical errors, misdiagnosis, drug-related problems, etc (although he mentions pharma as being almost as evil as insurance.)

2.  As long as Washington politicians are bought and paid for by health insurance, nothing will change.  As long as health insurance companies continue rewarding their top echelons with huge paychecks and bonuses, nothing will change. 

3.  I whole heartedly agree with some of his statements as they regard the services we are all entitled to because we are citizens of America and our communities:  police, firefighters, public education, inexpensive postal services, parks, libraries.  Why isn’t healthcare on that list?  Well — for seniors who use Medicare, it is.  And what about the other 47 million of us?

For the first 50+ years of my life, I never would have believed I could even think this thought, much less type it…. and based on the research I have done, all of it prior to seeing Sicko today….. I do believe American needs to move to universal healthcare.  Don’t forget — you’re hearing this from a woman who has owned businesses, and believed in private enterprise and profit all her life….. but LIFE is the keyword here…. and because health insurance and big pharma have become so greedy, because that greed is costing lives, because the need of the masses to access better care is more important than the need of individuals to control….  yes…. I believe we need to create a healthcare model similar to our public education model. 

Do I think it will be perfect?  Heavens no.  But if it parallels public education, then many MANY more will benefit, and for those who still believe private care is important — well — we have private schools, too, right?

Of all the statements that made me really think, and there were many, this is the one I will leave you with:

“You can judge a society by how it treats its worst…. and its best.”

Society, our politicians, and our American way of medical care is failing us.  It’s time we patient stood up and made the noise necessary to invoke the change that’s needed.


Read what others have said about Sicko:

R J Eskow in the Huffington Post

M Foust in Artvoice

The American Thinker

And to learn more about how those running for president have reacted:  The LA Times

…. and see follow up blog posts from Every Patient’s Advocate,

What Sicko Doesn’t Tell Us  and Why Sicko is Only the Tip of the Iceberg

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Yackety Yak: It’s all about the doctors

This post has been moved (along with the rest of this blog….)

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Isabel’s Misdiagnosis May Save YOUR Life

Jason Maude wants to save your life. 

He lives in the UK where healthcare is a given, like a public education.  If you are a citizen, you get healthcare.  But remarkably, stories of misdiagnosis are identical to those in the US.  It seems that regardless of whether healthcare is an entitlement or insured, misdiagnosis still happens.

In 1999, Jason’s daughter Isabel, then age 3, was misdiagnosed and nearly died.  From a “normal” case of chicken pox, she developed toxic shock syndrome, then necrotizing fasciitis, a med-speak term for flesh eating bacteria.  But the doctors didn’t see it.  They didn’t diagnose it until it was almost too late.  Instead, because Jason and his wife trusted their intuition, and relentlessly pursued the REAL answers, Isabel eventually got the diagnosis and care she needed.  Today she is a healthy, happy 11-year-old because of her parents’ diligence.

Now suppose your child almost died – or DID die — from a misdiagnosis.  How would you feel?  What would YOU want to do?

Most of us would be beyond angry, and rightfully so.  Most of us would make sure we did everything we could to punish those providers who had killed, or almost killed our children.

But not Jason and his wife.  Instead, they decided to do something to make sure nobody else’s child, and his/her parents and loved ones, would ever have to live through such a horror.

How? Jason approached the doctor who had been in charge of Isabel’s care — the one who was ultimately responsible for Isabel’s corrected diagnosis — and suggested the two of them collaborate on putting together a system for doctors worldwide to use to make sure all diagnosis possibilities were being considered for any given medical problem.  The doctor, Joseph Britto, MD, readily agreed. 

Since then, they’ve made it happen.  A huge database of every diagnosis framed by all its possible symptoms — and vice versa — is available to medical centers and doctors’ practices worldwide.  It’s being used by the likes of Yale-Newhaven Children’s Hospital, the University of Virginia Health System, and other esteemed — and very wise — hospitals and doctors, both in the US and the UK.

Yesterday I had the honor of speaking with both gentlemen.  I think we could have talked for hours and hours because we have so much in common and we agree on so many fronts!  Jason and I have almost identical advocacy stories, of course.  We agreed that turning our anger into something positive for others is incredibly cathartic. 

And I learned, and confirmed so much!  Such as:

  • Did you know misdiagnosis is the 4th leading cause of death in the US?
  • Did you know most doctors jump to judgement about your diagnosis and frame it so tightly in their minds that they dismiss other possibilities?  (Just ask Jerome Groopman.)

So as you can imagine — I am ecstatic that this system exists now.  I wonder whether it could have saved me from my misdiagnosis odyssey?  One can only hope.

And I do have a few questions about its use — one that will remain unanswered for awhile, and one that was answered, like the answer to a prayer.

Question One:  is there any way to overcome the objections of the the way-too-many-doctors who see the use of such a system as stepping on their toes, to transcend their egos for its use?  If I try to answer this question myself, I think the solution will lie in showing them it can save them money because there will be fewer lawsuits (yes — money — the root of all healthcare in the US).  Please note I haven’t mentioned that they would be interested in using it to save lives.

Question Two:  is there any way patients can influence use of the Isabel system?  or use it themselves?

Both gentlemen were quick to tell me about the beta-testing of a system for us patients to use — the Isabel Symptom Checker — that we can use and share with our doctors.  Yes!!

Now if you read my work regularly, you know I don’t, in general, support the use of online symptom checkers.  I think the ones that currently exist are more problematic than helpful.  You’ll either decide what your problem isn’t important enough to bother the doctor (and it might be life threatening!) or you’ll decide you’re dying of a rare disease (when you aren’t very sick at all.) 

So why would I support the use of an Isabel-related system for consumers?  Because it is intended entirely to COMPLEMENT your work with your doctor — not replace the doctor’s opinion.  It is intended to help you and your doctor expand lists of possibilities — differential diagnosis options — not get in the way of your work with your doctor.

Until the patient-consumer version is available?  Patients who are lucky enough to live in areas where hospitals or doctors currently use the system can choose to see those doctors.  Find the most current list of Isabel users here.

So once again, my belief that everything happens for a reason is confirmed.  I’m so sorry Isabel and her parents suffered as they did.  But I’m thrilled that Jason took his anger in the direction he did.  As the Isabel Diagnosis System saves more lives, others, too, will realize what a blessing their odyssey was, too.

I’ll keep you, my loyal readers, posted on the launch of the Isabel Symptom Checker.  It’s most definitely an idea that’s time has come.  Patient Empowerment at its finest.

Learn more:

Link here to the Isabel Healthcare System website.

Link here to an article in Forbes Magazine.

Link here to an article in the New York Times.

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Making an End Run to Get the Help You Need

You may have heard about the woman who died on the emergency room floor at Martin Luther King Harbor Hospital in Los Angeles:  She was in great pain, writhing on the floor, yet the staff would ignore her, walk around her, step over her.  Despite her obvious agony, and despite the fact that she was IN the emergency room, surrounded by medical professionals, including doctors, nurses, aids — she could not get treatment.

In desperation, her husband called 9-1-1 — his end-run attempt at getting help for his wife. He was told that since they were already in the emergency room, there was nothing more the 9-1-1 service could do for him.  But his call certainly punctuated his incredible frustration, and probably the interest of the news media, too.  Honestly — I think it was a brilliant idea, despite the fact that he continued to be disregarded.  But bless his heart for trying.  Karma will take care of those who allowed his wife to die.

A new report came out this week, too, about another ridiculous, but no less real, example of the dysfunction of our American healthcare system — one that may require an end run, too.  It regards HIPAA laws (pronounced HIP-ah) which are federal laws which address privacy issues for patients.  The intent of the law is to protect that privacy, and to make it a crime to share information with the wrong people.

Who are the wrong people?  Anyone who is not the spouse, or a legally designated advocate for the person.  The patient can see his or her own records.  The spouse of the person can see those records.  The parent of a child under the age of 18 can see those records. Additional providers involved in the patient’s diagnosis and treatment may see the records. But unless paperwork has been signed somewhere — NO ONE ELSE* is allowed to see those records — except:

Any organization that is involved in “health care operations.”  Like:  insurance companies, the government, pharmacies, the police, or others. 

In theory, privacy of medical records seems like a great idea.  In practice, it seems that all the hurdles are planted in front of the people who love and care about the patient, and all the paved roads are available for anyone else.  *Worse yet, too many doctor’s practices translate the law incorrectly, meaning they allow access to some of the wrong people, and deny access to some of the right people.

As I mentioned before, a new report came out this week citing a loophole in the HIPAA laws — and it is frustratingly no surprise!  It seems that pharmacies, who do have access to private records, can turn around and SELL  (yes — profit by!!) patients’ medical records and personal information to other pharmacies.  No permission is needed — they can just do it. 

Bottom line — the adult child of an elderly parent needs access to her mother’s medical records to help him determine whether she needs a certain kind of treatment, but the law will not allow him access to that information when no paperwork has been signed by the mother*.  Yet, if a pharmacist wants that information to help him sell more over-the-counter drugs — hey — why not?  That’s just a marketing cost, like buying a mailing list.

The end run?  Just like the man who dialed 9-1-1 from the emergency room to get help for his wife….  if you need to see the medical records of a loved one, and you are denied access, contact your friendly pharmacist — and maybe he can buy the records for you?  You’ll have to pay him for the records, of course — but hey — don’t forget:

 American healthcare is not about health and it’s not about care — it’s about money.

Sometimes you just gotta do what you gotta do.


*In fact, according to a consumer publication from the Department of Health and Human Services regarding HIPAA laws, your records may be shared with “family, relatives, friends and others who you identify who are involved in your health or your health care bills, unless you object.”  This is the point where many providers can’t seem to translate the law to make sense.  They claim that “who you identify” means they need your signature to do so.

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Ovarian Cancer, Condescension and Intuition

Ovarian Cancer is one of those topics I’ve blogged about previously, because my mother-in-law was diagnosed with it six months ago.  Her diagnosis came after many months of complaints, mostly gastro-intestinal in nature.  Despite her ongoing complaints, she was never diagnosed until she was hospitalized.  At the age of 86, she underwent surgery (wrong, wrong wrong!  but tell that to my sister in law who made THAT decision) and today she is miserable, has little concept of reality, and is living in a nursing home.  It breaks our hearts when we visit.  We have no idea how long she will survive in this state of pseudo-living.

With that backdrop, you’ll understand why this morning’s news about a solid attempt at recognizing early symptoms for ovarian cancer makes me jump for joy.  I see my mother-in-law’s problems everywhere on the list of factors to watch for:  bloating, abdominal pain, difficulty eating, frequent need to urinate….  Yes, they are problems we have all had at one time or another (even boys do!) but when they continue, daily, for more than two weeks, cancer experts now tell us to get to the doctor, preferably an OB-GYN, for an examination.

The news was everywhere;  radio, TV and print. The New York Times covers this development better than most others, at least if you want more info than just the top level points. 

And here’s the quote from the NYT that makes your favorite Every Patient’s Advocate shudder, “In a survey of 1,700 women with ovarian cancer, Dr. Goff and other researchers found that 36 percent had initially been given a wrong diagnosis, with conditions like depression or irritable bowel syndrome.  Twelve percent were told there was nothing wrong with them, and it was all in their heads,” Dr. Goff said.”

I can’t begin to tell you how much that raises my ire!!  “There there, little lady.  There’s nothing really wrong with you.  It’s all in your head.”

As patients, we know when something isn’t right.  We KNOW when our bodies are signaling problems.  I believe the only reason patients are ever told something is “in their heads” is because the medical professional can’t do his job — he can’t diagnose – so he makes it the patient’s error and not his.  Condescension in the form of placing the blame on the patient is unforgivable.

We human beings are blessed with instinct and intuition.  We all have that little voice that tells us when something is right or wrong.  We know when our gut is signaling good or bad. 

Trusting that inner voice is the next step.  Those of us who know how to trust it have a distinct advantage.  It’s worth learning.  It’s worth practicing.  And when someone tells you something you KNOW can’t be true (because your inner voice has told you so) — then fight back.  If a doctor tells you something is all in your head, then see another doctor. If you aren’t satisfied with the answers, or non-answers, then continue searching.

That’s how I proved I didn’t have cancer.  That’s what kept me out of chemo. 

And that’s what will make sure women get diagnosed early and successfully treated for ovarian cancer. 

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