Archive for the 'Patients' Category

Smoking and Botox — Wishful Thinking and Common Sense

The FDA came out with a report on the negatives of botox injections…

It’s like deja vu, isn’t it?  Where is common sense?

Read this post at About.com, Patient Empowerment.

ABC’s Eli Stone — Gotta Love a Little Controversy

I’ve watched and heard plenty of controversy from those who are either upset, or elated, that ABC will be airing an episode of its new TV show, Eli Stone, tomorrow night.

Eli Stone is a lawyer who defends a lawsuit imposed by a family who believes that a vaccination caused their child to develop autism.

From the American Association of Pediatrics which believes (like the CDC, the IOM and other government and mainstream groups) that vaccines do NOT cause autism) to groups of parents and professionals who believe vaccines are at the root of autism…. they are riled up and making plenty of noise.

The AAP wrote a letter to ABC insisting the episode not be aired. The parent-group that shares the autism-vaccine correlation beliefs insists it be shown.

And my take on the controversy? It’s completely unrelated to autism, vaccinations or anything related to health or medicine….

Read what I had to say on About.com.

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A Reversal for Alzheimer’s Disease? Maybe. Read Behind the Headline.

Regular readers of this blog know that my mother suffers from Alzheimer’s Disease. That means our entire family suffers from the “long good-bye.” My dad, in particular, has been a saint of a caregiver, but he has watched the love of his life descend into the hell that strips them both of their quality of life.

You can imagine my excitement at seeing a headline about a reversal for Alzheimer’s disease!

As I read the story, I learned that an 81 year old gentleman with well-documented Alzheimer’s disease had been given a shot of Enbrel (a drug approved only for arthritis) directly into his neck, and within 10 minutes he regained a great deal of his cognitive capacity. Six months later, with additional shots, he has retained this improved memory. His family, as we can only imagine, was ecstatic.

But, of course, if it seems to good to be true, it probably is. So I got in touch with my Alzheimer’s point person, Dr. Sharon Brangman, a geriatrician and aging expert. I was able to interview her yesterday for my radio show. The interview will be aired this weekend.

Bottom line? It’s always wise to look behind headlines of studies — and this one is a good example. While Dr. Brangman does believe that there are seeds of good news here, there are a number of questions, too. Here are a few of them — enough to raise an eyebrow:

  • This test was done on only one person. The injection has been attempted with others, and presumably they improved, too. But many, many more people would need to show similar improvement to suggest this is a step forward for Alzheimer’s patients in general.
  • The journal which published the account of the experiment is the Journal of Neuroinflammation which is so small, Dr. Brangman had not heard of it. She questioned why something seemingly so huge was not published in a larger, better known professional journal, such as the New England Journal of Medicine.
  • The chief researcher owns stock in the company that makes Enbrel, and is trying to patent the way the injection is administered.

Bottom line? The actual science behind the idea of reducing inflammation is bonafide — and it’s an exciting approach to attacking the inflammation of the brain, which may improve cognitive function in many others.

Is it worth being encouraged? Absolutely.

Is it something we’ll begin to see more information about? Most probably.

Is it a cure for Alzheimer’s? Probably not a cure, but perhaps a new approach to treating the symptoms of dementia and worth keeping an eye on.

Wise patients understand that medical news can yield all kinds of information, but reading behind the headlines provides much more information about their validity and whether or not they apply to our own medical problems or those of our loved ones.

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Why Does the US Have the Worst Rate of Preventable Deaths Among Industrialized Nations?

From 2002 to 2003, about 101,000 Americans died from preventable causes ranging from diabetes to bacterial infections and surgical complications, so says a study releases this week.

The reports are based on results from a study undertaken by the Commonwealth Fund, a private New York City based health policy foundation.  The study took place among 19 industrialized nations.  The results were published in the journal, Health Affairs.

The US ended up at the bottom of the preventable death barrel.  France, Japan and Australia were ranked at the top.

Researchers looked at deaths before age 75 from a variety of “amenable” causes which included heart disease, stroke, some cancers, diabetes, bacterial infections, surgical complications and others.  They arrived at a death rate and numbers of patients who died before they might have if they had received “timely and effective healthcare.”

Among the countries reviewed, 64.8 of 100,000 French people died from preventable causes.  And 109.7 of 100,00 Americans died from preventable causes during 2002 – 2003.

The same study was undertaken in 1997-1998, and the US came in 15th then — so it descended to the health system basement since then.  Between the first study and the second study, all of the countries improved their preventable death rates by an average of 16 percent.  Except the US — which improved by only 4 percent.  (That may not be as bad as it sounds since the US’s rate was at a higher level to begin with.)

Why is the US in such bad shape?  Those at the Commonwealth Fund blame access — the fact that 47 million Americans cannot afford insurance or healthcare.  I have no doubt access is a big part of it.  If you can’t afford healthcare, then you don’t seek it out.  Who wants to spend a lot of money on a doctor appointment, only to be told you are sick, when you don’t have the money to treat the sickness anyway.

But I add my own two cents worth of reasons:

First, I believe that part of the answer lies in the way access is handled among those who DO seek help.  We have symptoms, we go to the doctor, and the doctor spends so little time with us that too often, the problem assessment isn’t handled correctly to begin with.  It’s a problem of misdiagnosis and missed diagnosis.  I’d be curious about the correct diagnosis rates among those other industrialized countries.  It only makes sense that people will die if their preventable disease isn’t diagnosed correctly to be begin with — even if it is eventually discovered, it may be too late to treat effectively.  (Yes, I’ll admit, I’m not particularly objective about this part, based on my own experience.)

Second, I believe our American lifestyles lead to preventable death.  We overeat, smoke, drink too much alcohol, drive too fast, live like couch potatoes — and then if we do go to the doctor, we expect the doctor to give us a pill that will fix our bad behaviors.  Please!  One pill won’t fix a lifetime of unhealthy habits.  My curiosity expands to the lifestyles in the other countries that ranked higher than the US.

The Answers for Wise Patients:

A two-pronged attack.  First, begin examining some of your own lifestyle habits to see if you can step up to the health plate yourself.  Don’t blame your doctor or lack of access for your bad choices.

Second, knowing that your doctor will never (in our lifetime) have more time to spend with you, pick up the banner yourself, and begin empowering yourself.  Take responsibility for your own healthcare.  Seek out the doctor when you are prepared to do so.

The truth is — excellent care exists in the US for those who seek it out.  I know the payment system is a barrier.  There is no question about that.  But that’s not going to change anytime soon.  So we patients need to do what we can to improve our own chances.

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MRSA: Victimization and Shooting the Messenger

Yesterday’s post, where I told the stories of three (+2) victims of MRSA infections, raised ire, blame and excuses from commentators and emailers alike.

Never mind that they were stories of five people who are infected with MRSA, one of whom has basically been left to die. Never mind that the frustration levels of these patients while trying to get treatment are over the top. Never mind that these people are victims of dirty medicine — the kind where guidelines and controls exist, but are ignored in too many places. The negative comments were aimed at me — it’s easier, after all, to shoot the messenger.

This post has been moved.  Find it by linking to its new location

MRSA: Patients Ignored, Left to Die

(Find an update to this post: MRSA, Victimization and Shooting the Messenger)

In the past two days, I have heard three stories, all related to MRSA and other hospital acquired staph infections, and all relating to heinous — even (in my not-so-humble-opinion) criminal acts on the parts of healthcare providers or politicos.

One story came from a colleague who visited a woman in the hospital. The woman contracted an infection after surgery almost a year ago. She is still in the hospital, on life support, not because of the surgery, but because the infection has just consumed her.

This post has been moved. Link here to find it in its new location.

Why Your Doctor Won’t Help You

Notice that the title doesn’t say “can’t Help You.”  It says “won’t.”  There’s a big difference.

CPT codes are the stuff a doctor’s practice is made from.  I know — you thought patients were the basis for a physician practice, but no, CPT codes are more important than patients — even though I can guarantee that most doctors wish that was not true.

CPT Codes, Current Procedural Terminology Codes, are all those little numbers that show up on the bill you are handed as you walk out of the doctor’s office.  They are supposed to represent every type of task performed in medicine — from a basic check-up, to diagnosis, to administering a shot, to giving a medical test, to the levels of that test, to surgeries, to anything at all.  They are developed by the AMA, the American Medical Association,  and are intended to be the standard by which all doctors get paid, and all insurance reimburses.  The codes are revised regularly, and new codes are developed by an editorial board that represents the membership of the AMA.

Among the most frustrated of patients I hear from are those who can’t get diagnosed.  There can be a number of reasons for not getting a diagnosis, but one of the big problems is that patients can’t find one central person to review all the evidence.  They are sent from specialist to specialist, each looks at his own tests and results, but they don’t look at results from other doctors, except maybe the one who referred the patient. 

I call this daisy-chaining.  Each doctor represents a link to the answer.  Each link might look at the information from the link it is connected to.  But none of those links review information from links they are not directly connected to.

So what does that have to do with CPT codes?  Plenty.  Because the reason they won’t look at the other records is because there is no code for doing so — therefore — there is no way they can get paid (reimbursed by Medicare or insurance) to look at the big picture for a patient.

Why not?  I have theories, and they all relate to money, of course.  The AMA represents the doctors.  One would think that if doctors wanted to do this kind of big picture diagnosing, or review of other’s notes and reports, then the AMA would develop a code for it, right?  So theory #1 is that doctors don’t want to be doing so.  They don’t want to be responsible for that particular task. 

Theory #2 is that why would the AMA waste its time if insurance won’t cover the cost anyway?  And that’s actually the root of today’s blog.  A review of the new codes for 2008 shows that codes have now been developed for doctors who take phone calls or email from patients.  However, the report includes a caveat that says Medicare and insurance companies won’t be reimbursing for them anyway.

So that explains why your doctor won’t do what you wish he would do — take a comprehensive look at all your health challenges, and help you get diagnosed even after seeing a slew of specialists.   They wish they could — but they can’t.  If they can’t get paid, they can’t stay in business.  If they aren’t in business, then what good does it do for anyone?

I do give a bit of credit to the AMA for at least giving their new codes a shot — it’s a start.  Many more are needed.

But what’s really needed is someone to kick the payers in the backside.  They work for US, afterall — we pay taxes and we pay premiums.  So why aren’t they held accountable to reimburse for all those codes? 

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When Your Doctor Fakes You Out

Empowered patients will be interested in a report today on the study results of a survey of Chicago area internists (family doctors). It seems that 45% of them see nothing wrong in prescribing placebos — fake sugar pills — for their patients.

The report actually tiptoes around what the results really mean. The spinmeisters had their say with phrases like, ” this study suggests that placebos themselves are viewed as therapeutic tools in medical practice” and “a growing number of physicians believe in mind-body connection.”

Yes — I do understand that sometimes the mind triumphs over matter — and I do understand the mind-body connection theories. I’m a believer.

I don’t bring this up because I think patients shouldn’t be given what works — and if a sugar pill will help the pain or symptoms go away — then OK. But that is NOT why doctors are giving their patients sugar pills.

Instead I see these results as proof that doctors don’t care to take the time to figure out what is really wrong with a patient and that, too often, a placebo is simply the answer to “there, there, little lady — it’s all in your head.” If you could read my email, you’d believe the same thing.

The fact that 45% of doctors would be willing to sacrifice their patients’ potential health by ignoring real symptoms or not treating them accurately is just one more reason why trust continues to erode between patients and their doctors.

And if they think the sugar pills can really help a patient? Then they should tell them that’s what it is. According to this report, that is most often obscured.

Check your medicine cabinet. If you find something labled Obecalp (which is placebo backwards) or Cepocab — which is a pill made of lactose, a natural sugar, and can be prescribed and filled at pharmacies everywhere — then your doctor has prescribed a placebo for you.

Ethical? Unethical? What do you call it when someone pulls the wool over your eyes?

If you’d like to read more, you can do so here.

Wise patients know that asking plenty of questions is the best approach to making sure they aren’t victims of a placebo prescription. When your doctor writes a prescription, there are definite steps that can be taken to verify that the prescription is bonafide, that it’s the right drug for the right problem, and what to expect when you take it.

Wise patients work to make sure they aren’t being fooled.

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How Supermarket Purchases Violate Your Privacy and Increase the Cost of Insurance

It’s cold and wintery.  Time to hunker down with plenty of comfort food and a toddy or two…  and while we’re at the store, let’s pick up a bottle of aspirin, some stomach acid medicine, and maybe even plenty of dog food for the rottweiler….

A swipe of both your store’s loyalty card (gotta get those discounts!) and of course, your debit card to pay for your goods — and home you go to lay in for the weekend, read a good book, and max out on all that junk food and alcohol.

Come Monday, your purchases, aligned with your identity, will be sold to a health insurer, or life insurance company, perhaps an auto insurance group….  and they will have that information to review should you contact them to make an insurance purchase.

Find the rest of this post at its new location:

http://www.trishatorrey.com/2008/01/03/how-supermarket-purchases-violate-your-privacy-and-increase-the-cost-of-insurance/

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EveryPatientsAdvocate.com
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Dad — an Empowered Patient Sets a Fine Example

…. and today is his 81st birthday.

When people ask me how and why I began doing patient advocacy and empowerment work, I first tell them about my misdiagnosis, and then I tell them it’s because I learned how to be an empowered patient from my dad.

Since beginning his battle with cancer in 1986 — yes — more than 21 years ago — Dad has battled his illness every step of the way. From learning everything he could, first through the libraries, then through the Internet, to partnering with his doctors but retaining decision-making for himself, to second guessing problems with a drug he was taking, then figuring out he’d been given the wrong instructions, to doing all the same for my mom to help support her through her Alzheimer’s disease… yes… dad is the epitome of the empowered patient.

Learn more about the steps he has taken here….

Then join me in wishing him a Happy Birthday!

I’m proud of you, Dad…. with love…. from your eldest :-)

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EveryPatientsAdvocate.com
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