Archive for the 'Patient Empowerment' Category

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Week in Review for Every Patient’s Advocate

Here are the latest Every Patient’s Advocate posts:

How the Hepatitis Injection Scare Affects You

Patients Get Billed for Medical Mistakes

Infection Rate Study Exonerated – More Lives Will Be Saved

Ask the Author of The Empowered Patient

Did You Fall Prey to Jarvik’s Lipitor Pitch?

Managing Our Own Expectations as Patients

Forbes: Patients Lose Thru Lack of Hospital Competition

When the Psychiatrist is a Bully

Health Net Pays $9 Million for Canceling Patient’s Policy

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.

The Nocebo Effect: The Potentially Deadly Version of “It’s All in Your Head”

link here to find this post at the new location of the Every Patient’s Advocate blog

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When Marines Become UNCitizens: A Story of Misdiagnosis, Malpractice and Outrage

[Let me begin this post with a bit of a disclaimer. My husband is a retired veteran of the Air Force -- 20+ years -- before I knew him, but that doesn't diminish my pride in the fact that he served our country. His son and our daughter in law are both career Air Force, too, and our other daughter-in-law just completed eight years in the Air Force. So yes, we are huge supporters of our American soldiers.]

The story I’m about to tell you holds several interests and outrages and raises some important questions:

1. Since when is a soldier not a citizen first?

2. How is it that an accurate diagnosis could turn into a MISdiagnosis 10 years later?

This story is told on CBS’s evening news — about a young soldier, Sgt. Carmelo Rodriguez, who joined the Marines in 1997. During his induction physical, the doctor noted a mole and called it a melanoma on Carmelo’s records. But nothing was said to Carmelo, and the paperwork was filed. Carmelo went through training, has spent these ensuing years in the Marines, and was deployed to Iraq…

…. where last year, the mole began to get inflamed and filled with pus…. so the sargeant checked in with the military doctor. He was told it was a wart, and to “wait and see.”

Sargeant Carmelo Rodriguez died 18 months later, of melanoma.

Turns out, according to the military itself, that there are “several hundred” cases of misdiagnosis of medical problems for soldiers in Iraq each year. Others have died from misdiagnosis and medical mistakes, too.

And I SO UNDERSTAND THE OUTRAGE! Because I’ve been there — misdiagnosed and floundering. There are tens of thousands of us — but most of us aren’t soldiers…

So here is OUTRAGE #2: Because Sgt. Carmelo Rodriguez was misdiagnosed by a military doctor, his family has no legal recourse. None Nada. A law passed in 1950, called the Ferris Doctrine, removes that right for soldiers, even when injured by the actions of a military doctor.

But wait! There’s more!  (and you can read the rest of the post at my new blog location…)

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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Want more tools and commentary for sharp patients?
Sign up for Every Patient’s Advocate email tips
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Join Trisha in the Patient Empowerment Forum at About.com
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Or link here to empower yourself at
EveryPatientsAdvocate.com
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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.


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