Archive for the 'Media' Category

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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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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Overcoming the Doctor-Patient War of Words

I seem to have hit a nerve with my post about Dr. Steve Cole’s editorial published a few days ago. Dr. Cole asserted that the reason healthcare costs are going up is because doctors have learned to milk the system in ways related to how they order tests, prescribe meds and other tasks which allow them to use billing codes that get reimbursed by insurance at a higher rate.

Wow! Here are a few of the post outcomes:

  • My blog hits doubled.
  • The number of comments to the post doubled over my highest day previously.
  • Several doctors — those who commented and those who emailed — were ready to shoot the messengers — both Dr. Cole and me!
  • Some doctors agreed with Dr. Cole.
  • Some doctors vehemently disagreed.
  • And patients — always the ones who find themselves at the bottom of the totem pole, once again feel victimized by the whole sorry situation, regardless of how it came about or how it’s being handled.

As your friendly — and peace loving — Every Patient’s Advocate — let me raise a few points and clarifications:

There are many reasons the costs of healthcare are increasing. Dr. Cole offered one set of reasons but certainly not all of them. Others include the wish for private insurance to profit more and more, the too-high costs of drugs, the bad habits of patients which require more care to “fix” them (like smoking, obesity and others), the increasing healthcare costs of an aging baby boomer population, the fact that people are living longer, meaning they need higher priced care longer, the higher costs of advanced technology, and others. One commenter to the blog (justordinaryjoe) took a stab at this master list and did a good job at it.

What truly upsets me — UPSETS ME — is that somehow this translates to a them-vs-us discussion. Doctors VERSUS patients or patients VERSUS doctors. We’ve lost the “and” — and that, to me, is frightening and dangerous. This is not about a conflict. But it is about a loss of trust.

But a patient’s loss of trust in his/her doctor is not the trust that should be lost. The patient AND the doctor should be focusing their lack of trust on the very system that has created it. That’s what is broken — the system of healthcare in America. And it won’t be doctors or patients who can fix it, even though it’s doctors and patients who pay the highest price.

Recognizing that it’s the system — and not the doctors and patients — then we patients must work harder to collaborate with our doctors, and doctors must work harder to collaborate — and respect — patients. Here are some of the ways that can happen:

1. Respect for TIME: Time is money. And the respect for time is one of the biggest violations.

Doctors — PLEASE respect the time of your patients. Give them your 100 percent attention during those brief six or eight minutes you will see them. And don’t make them wait in waiting rooms for more than 10 minutes. After 10 minutes, it is a violation of your patient’s time.

And patients — PLEASE respect your doctor’s time. He can’t make a living (and yes, I’m serious about that) if you impose on his time for more than you deserve. Granted, you are hiring him to do a job for you. But you aren’t paying him out of your pocket — and you just can’t have ALL the time you want — so be concise, be specific, ask targeted questions and move on.

2. Respect for KNOWLEDGE

Doctors — you don’t have a corner on all the knowledge. Please respect that patients know their own bodies better than you do. Don’t try to fit their square problems into your round holes. Understand that the internet does yield ideas for them and be willing to discuss them, even if they seem ludicrous to you.

Patients – your doctor spent up to 12 years gaining the medical education needed to accurately diagnose and treat you. Don’t think that by spending an hour or two on the internet, or by talking to other people, that you can trump that education. Ask for help in translating new information you learn… and do so with….
3. Respect for the COLLABORATIVE PROCESS: Getting to WELL is not one sided.
Doctors — please don’t jump to conclusions. Doctors must work WITH their patients — not AT them. And never EVER (well, OK, hardly ever) tell any patient that a malady is all in her head! (see RESPECT below.)

And Patients — make sure you participate collaboratively, too. Ask questions that allow you to assess possibilities, ask more questions, and arrive at a decision WITH your doctor, not just because your doctor tells you that it’s the “best” answer for you. YOU are the only person who can determine the best answer for you.

4. Respect for DECISION-MAKING

Patients — YOU are the people with the responsibility for making decisions about your own bodies (and, in terms of advanced directives, your own demise.) You need to step up to that plate to do so. Don’t just default to what the doctor recommends. Ask instead for a good review of ALL your treatment options, the pros and cons of each, and then make as objective a decision possible based on that input.

Doctors — don’t abbreviate the list of options you give a patient just because you think others aren’t good options. (And a message to many — don’t try to tell me that doesn’t happen, because even if you don’t do it, you know it happens with your colleagues.)

5. Respect for…. RESPECT

Doctors — working with a patient does not allow you to judge him or her. I wish I had a nickel for every time a patient has said, “The doctor just laughed at me.” or “I was so insulted!” A patient comes to you for help and counsel — not for your judgment. You need to treat that patient respectfully.

Patients – and I’m serious about this — the only time you need to respect your doctor is if that doctor deserves respect. If your doctor laughs at you or insults you, or in some way makes you feel like less than the respect-deserving person you are — say something! And if you can’t muster the ability to say something, then send them a report card and tell them. And — if necessary — find yourself another doctor.

And the bottom line is:
Doctors: please make sure your patients understand and experience the respect they deserve. For most of you, this is a daily occurrence. But we all know that for many, it’s not even on their radar.

Patients: stop expecting your doctors to be gods who can overcome a broken system to help you get the medical attention you need. For most doctors are truly doing the best they can. And it’s up to you to weed out the ones who aren’t — and walk away.

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Doctors Work the System to Increase Income – at the Patient’s Expense

Found an interesting op-ed from the Dallas News online yesterday, written by Dr. Steve Cole entitled, Biggest factor in rising health costs are the doctors themselves.” Unfortunately, the title doesn’t even begin to touch the content, so many folks will miss this enlightening piece — a piece that should be read by everyone who has an interest in the costs of healthcare.

The article explains many of the reasons healthcare costs go up based on a doctor’s wants and needs and not necessarily on the best interests of the patient. There are a few statements that should make all of us pause — because they speak to the real problems of increased costs. I give Dr. Cole plenty of credit for citing these points — and no doubt he’s taking plenty of flak from his physician-colleagues for raising them.

Find the rest of this post at the new blog location.

Patient Empowerment on About.com

This is the announcement I’ve been waiting to make to you, and it’s finally time to spring it….

I’m pleased to tell you that as of Friday, About.com has launched a new site for Patient Empowerment — and yours truly is the expert behind the scenes.

aboutlogo.gif

About.com is owned by the New York Times — and has some impressive credentials:

  • About.com is one of the 15 most visited Web sites in the US
  • About.com is a top-ten content site
  • Every month, 34 million unique visitors in the U.S. (average; Nielsen//NetRatings) and 51 million worldwide (average: About metrics)
  • About.com’s content is created by a network of more than 600 Guides. These people are passionate about their topic areas, and have deep expertise and credentials in their fields. Guides make sure our visitors find answers and advice that are personally relevant, credible, and useful – all delivered in a human, accessible voice.
  • About.com is a “companion to your news” site, providing depth and breadth behind current topics

A big benefit to those with interest is the fact that we will have an ongoing forum on any topic of interest related to healthcare delivery — the good and the ugly.

Yes, this personal blog will continue. This blog and the one at About.com will cover different topics on any given day, so you’ll want to check them both. Comment on them, too!

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From the desk of (12/1/07)…

Miscellany from the week, not requiring full posts on their own….fromthedeskof.gif

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My big news is ready to be sprung! Although, through today’s blog, I’ll announce it “softly” — a bigger announcement is in the works for this week.

You may be familiar with About.com — tens or hundreds of millions of visitors each month go there to learn about 600+ topics of interest ranging from Women’s Issues to Fishing to Poker to Fashion to Football — and now — patient empowerment!

Yes — as of yesterday afternoon, the new About.com Guide to Patient Empowerment was launched — and yours truly is the expert/guide. Take a stroll on over! Let me know what you think! Join the forum so we can chat! And if you ever want to touch base, just link on my name at the top — my email address is right there.

The web address is: http://patients.about.com Why not bookmark it or add it to your favorites?

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An interesting report on the Thursday evening NBC news about differences in the way African American women are diagnosed, treated, provided with preventive medicine, etc…. It actually strikes me as the next revelation in the fact that medical research just can’t be generalized. First we learn that women require different diagnosing and treatment from men for problems like heart disease. Then we’re told that children can’t take smaller doses of adult drugs because “children are not simply small adults.” And now we learn that genetic makeup related to skin color affects the success of diagnosis and treatment as well.

What others are we missing?

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Has anyone else noticed this? Everytime I turn around — for the past several weeks — there have been more ads for health insurance on the TV, in the newspaper. From those plans that “pay you back” to supplemental plans for Medicare…. they must be spending millions if not billions.

Wouldn’t our premiums be lower if they didn’t spend so much on advertising?

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Today is World AIDS Day and it seems there’s not much mention of it in the press. My cousin Tim has AIDS. Tim is in his 50s. As a younger man he was a vibrant and talented actor, appearing in everything from plays to a soap opera in England back in the 1970s. Now, in these later years, Tim is a slave to the medications that keep him alive and by his own estimation, he doesn’t feel like his life has much quality.

My thoughts and prayers are with Tim and others who suffer through such a horrible disease.

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MRSA: Those With Power Aren’t Paying Attention

Two reminders during the past week about MRSA and the real problems facing those who are infected by it — and those who aren’t.

The first was an email from Genevieve who told me about her husband’s experience after knee replacement surgery. Two days after being removed to a rehab center, he began running a fever, and his incision starting turning red — obviously the sign of an infection.

He was transported by ambulance to the hospital where he had the surgery, and the resident on call proceeded to examine his knee — with no gloves on! Genevieve objected — loudly she says — “wait! what if it’s MRSA?”

The doctor turned to her and in a loud voice, exclaimed that MRSA wasn’t the problem everyone thinks it is, and she shouldn’t get so upset! Genevieve, however, insisted he wash his hands and put on gloves before touching her husband again. (you, go, Genevieve!) Fortunately, while there was in infection at the site of the surgery, it was not MRSA.

The second reminder came in the form of an editorial included in Health Leader’s Media by Molly Rowe called MRSA, MRSA Me. She tells about her difficulties this past summer in getting her “spider bites” diagnosed as the MRSA they were, and the ensuing disinterest on the part of her family care doctor when she was later scheduled for knee surgery and they didn’t care about double checking that her infection had, in fact, been healed. You can just imagine what might have happened had the MRSA spread to her surgical site.

Clearly, despite the media attention, despite the 100,000 deaths each year, despite the cost to hospitals of taking care of those who get sick from it — the very people who can make a difference don’t seem to be paying attention! It’s as if they take the concept of transparency (recognizing the problem so they can do something about it) to mean invisibility (if we ignore it, it will go away.)

It’s time those leaders in hospitals, and their staff, became “infected” with whatever impetus is needed to take note and take these infections seriously. Sadly, it will likely require some horrible tragedy — like the loss of a hospital’s CEO or the CEO’s loved one to MRSA — before the people in a position to make a difference will do so.

For now, we patients need to do just what Genevieve did. She proclaimed her dissatisfaction loudly to take care of the present danger. THEN, she got in touch with the hospital’s administration afterwards to complain. She is truly an empowered advocate.

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. . .This Blog Has Moved!. . .

Where did everything go?

Not far.
We just relocated, that's all.

You can find every post and comment from this blog
-- and plenty more --
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Every Patient's Advocate Blog.

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