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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Lot’s ‘o Topics – Find Links Here

It’s been a busy several days — as the holiday season always is. Haven’t written anything new on this blog for your consideration, but I have been busy!

Here are the topics I’ve covered, and links so you can find them:

What about Nataline?

The 17-year-old who got caught in the crossfire over insurance coverage, then died from liver failure… Would universal insurance have saved her?

Is Your Family Together for the Holidays?

Why not talk about healthcare issues? Recording a family history can be helpful to all blood relatives.

Do You Have a Flexible Medical Spending Account?

You may have to use it up before December 31 — or you may have until March 15. Here are some ways you can — or can’t – use that money.

An Ounce of Prevention…

Costs much less than that pound of cure. Why not stay healthy and save money, too?

Sure enough… plenty of empowered patient reading for these quieter times between the holidays. If you think of a topic you’d like me to cover, then contact me!

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Psych Drugs, Shady Practices and One Fixer

In 2003, after taking Zoloft for six weeks to help him sleep, Woody Witczak, a vivacious, intelligent, energetic and happy man, hung himself — and died.

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Last evening I leafed through my December issue of Consumer Reports. There on page 65 was my friend and colleague Kim Witczak, Woody’s widow, and one of the most active fixers I know.

The article featured Kim’s work to clean up the rules by which drugs get approved by the FDA. Since Woody took his own life, and because it seemed so completely outside anything Woody ever would have done, Kim knew there must be some kind of dark force, some kind of shady coverup that contributed to the tragedy.

She learned several things. She learned that Zoloft is an antidepressant, not a sleep aid, and it had been prescribed to Woody “off-label.” Woody had just begun working at his dream job. His sleeping problems were related to his excitement and overwork — not depression problems. Kim questioned how Zoloft could have been prescribed for him.

Digging further, she learned a few things about Zoloft and even more about the FDA and its approval process for new drugs. Included were the following: pharmaceutical manufacturers could apply for approval to make drugs available to patients by showcasing only those clinical trials that show the drugs “work.” They were able to cover up any others that didn’t work out so favorably. Also, once a drug was approved, the FDA could request follow up studies, but had no way of enforcing those requests.

It also turns out that among the people who have the power to approve or disapprove any given drug, are people who may benefit financially from the sale of the drug. Think about that for a moment…. A panel of professionals is supposed to objectively determine whether a pharma company can make millions or billions of dollars on a drug — and some of those people will be the ones who make money when it’s sold.

Objective? I think not.

And here’s a big one, too — more than half the FDA’s budget for considering whether or not drugs should be approved comes from the fees paid to them by the pharma companies. So, when paired with the revelation above about who sits on the review panels?

Scary, isn’t it?

In September, the laws changed for how drugs will get approved, and what follow up will be required. The law goes into effect within 18 months. Kim was a large force in getting the changes made, as was Consumer’s Union, the publisher of Consumer Reports.

The changes affected were: All clinical trials used to prove a drug is — or isn’t — safe will be made public. There will be some new regulations on the drug ads we see. All print ads will have a toll free number and a web address to help consumers report problems. The numbers of reviewers on the approval panel with ties to drug companies will be reduced (but not eliminated). But no change has been made to how the FDA’s budget is put together — meaning — approvals will continue to be influenced by contributions made by the pharma companies seeking those approvals.

There’s not much of a message here for us as individual patients and consumers — except — to be thankful we have people like Kim Witczak who take their pain and suffering from the loss of a loved one and turn it away from blaming and into fixing. You can learn more at Kim’s website, WoodyMatters.org .

Healthcare will be safer because of Kim’s work, and that of Consumer’s Union, too. Fixers at their finest.

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Kickbacks: Doctors, Pharma, Insurance and Surprise! Patients Caught in the Middle

See if you can get your arms around the following conundrum, which is typical of our dysfunctional American Healthcare System — only this time with a twist. We’ll begin with point-of-view:

Consumers (that’s us patients!): When we need a prescription drug to improve our health, we want the best drug for what ails us, at the lowest price possible. We also want affordable health insurance, with fair co-pays for those drugs.

Physicians: When it comes time to prescribing a drug for a patient, the doctor wants to be sure it’s the right drug with the best chance of improving the patient’s health. Further, the physician is also on the constant lookout for ways to increase his/her income. They are offered money, support and/or other incentives from pharma manufacturers on a constant basis, but this practice has become a real point of contention because it creates a conflict of interest. Now, for many, a possible new income stream has been offered by insurance companies (see below.)

Pharma companies: Are interested in maximizing income. Period. And they will do whatever they can to protect that interest. Their real allegiance is to their stockholders who may also be any of the players mentioned here. The great majority of their income is derived from branded/innovator drugs and they take a huge hit when their patents run out and they begin to compete against generics. They look for ways to reward doctors for prescribing and using their drugs.

Insurance companies: Are interested in maximizing income. Period. And they will do whatever they can to protect that interest. Even the not-for-profits want to maximize their income so they can pay out bigger bonuses to their top people. They are constantly on the lookout for ways to reduce their costs so their profits are larger. When they can get doctors to switch patients to generic drugs, (or when they can get patients to ask their doctors about the possibility) then they can save costs.

Some background:

Read the rest of this post at its new location:

http://www.trishatorrey.com/2007/11/26/kickbacks-doctors-pharma-insurance-and-surprise-patients-caught-in-the-middle/

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One-Third of Readers Will Shake Their Heads

I read news reports relating to health and medicine every day. Many of them are medical research study reports — usually interesting — but they also make me question how they are being interpreted.

Here’s what I mean: We are a nation of statistics, and statistics are the standard of proof. They are the foundation for evidence-based medicine, which is becoming the standard of care. In each of the medical research study reports I cite below, you’ll find statistics as findings:

Causes of Death are Linked to a Person’s Weight from the New York Times

America May Over Vaccinate from the Science Times

Heart Devices Zapped by Patient Studies from CNN

Sleepless? Maybe It’s Your Statin from Reuters

Here’s the problem I see: in each case, there is a percentage of patients the studied drug or device DID help, and a percentage of patients it did NOT. But the conclusions always seem to suggest that whatever the majority is, will rule. And once the majority rules, the drug or device may disappear for other’s use.

That’s a shame, because if you are the person that drug or device helped, but the majority were NOT helped, then it might be pulled from the market, and you may no longer have access to it. That doesn’t account for the fact that no two human bodies are exactly the same, and we can’t expect each person’s system to react the same way as someone else’s. (This doesn’t even begin to account for the studies that are not objective, or are flawed in their theories, to begin with.)

Medical research is finally beginning to recognize this on a big scale. Studies are showing that female bodies don’t react the same way as men (the symptoms of heart disease are a good example) and that children’s bodies don’t react as “smaller adults.” (the problems with children and adult antidepressants showcase this.)  Further, drugs are being prescribed “off label” meaning they were FDA approved for one medical problem but benefits for another medical problem were discovered.

So what’s the point? Evidence-based medicine should continue to be a scientific process with translatable results across the various segments of our population, as it is.  But the FDA and those who prescribe drugs need to remember that evidence based medicine is not intended to be a democratic process. We need to allow for individual differences.  So just because a drug or device doesn’t help the majority, it doesn’t mean it isn’t a viable answer.

I’ll even go so far as to say that if this recognition might have brought Vioxx to the market differently.  If Merck had admitted problems with Vioxx in some populations prior to sending it to the marketplace, those who found relief from the use of Vioxx might still have access to it today.

Here’s the article that illustrates this problem the best:

Study: A Third of Medical Studies are Wrong

It’s a little like the advertising truism, “Fifty percent of advertising works, I just don’t know which fifty percent it is.”

Point made.

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Medical Research Studies Take a Hit

As I am often reminded when discussing treatment options with patients, there are plenty of good alternative and complementary treatments available for many diseases and disorders. Lots of good preventive CAM remedies, too….

One of the frustrations for many patients is the emphasis placed by their allopathic (mainstream, western) physicians on using “evidence based” medicine; that is, those treatments that have undergone research and testing to prove they work in the majority of patient cases. In too many cases, that eliminates choices the many believers in CAM therapies can make. They are further frustrated because their doctors won’t discuss anything that isn’t evidence-based.

In most cases, I’ll agree, that evidence-based is the way to go. Studies have been done, trials have been run, and the evidence is there that they will work.

But when it comes to how that evidence is discovered, there are some real questions we patients need to ask, and those go to the very basic core of American healthcare, which is about money and sickness, and not health or care.

I ask these questions today after finding an article from Bottom Line about recent “evidence” that antioxidants don’t work, and in fact, might be dangerous. The point to the article is that it’s not that there’s a problem with antioxidants; instead there’s a problem with how the studies were run. And, in fact, the people doing the research have much to gain by proving there may be problems with antioxidants.

This question is not new. For years, questions about how research studies are conducted have been asked, and often those studies have been found to be bogus. Unfortunately, they are still “out there” to be found by unsuspecting patients who are trying to find options for their treatment. It all adds up to bad — and therefore potentially dangerous — information.

Why are they bogus? A variety of reasons, but usually associated with (you guessed it) money. In the case of CAM therapies, the basis often begins with the fact that businesses can’t figure out how to make enough money from something that isn’t regulated (most herbal remedies don’t have to pass through the FDA) — OR — that they manufacture an FDA approved drug that will lose marketshare if an herbal remedy is found to be just as effective.

Too often, the relationship between the findings and the money is hidden. These studies are released in peer-reviewed journals, and that’s how we hear about them – the mainstream press picks them up and publishes the basics. The researchers themselves are required in most cases to make statements about their possible financial relationships with the parties to the study. BUT the “peers” are not. So sometimes the problems with the study’s findings go to the relationship to the unnamed and unpaid peers, and not to the study itself.

As patients, we need to know the truth — and not the truth as seen through the eyes of someone with a financial stake in the outcome of a study. So to that end, if you are using a medical study to make a decision about treatment, you’ll want to look into the details of the study, ask your own questions, then seek the advice of a professional you trust.

It’s defensive medicine, and it’s unfortunately necessary.

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When Dirty Doctors Can’t Be Identified

As promised in yesterday’s post, I’m reporting today on a frustration among those of us who work in patient safety.

That frustration is once again sparked in this report from the Hartford Courant. Fifteen year old Mark Tsvok, injured in an auto accident in 2004, died from his injuries as a result of the misdeeds of Dr. Daniel H. Hechtman who made one misstep after the next in his treatment (or lack thereof) of the teenager.

After a series of investigations and hearings, Dr. Hechtman lost his license to practice anywhere in the state of Connecticut.

So what did he do?

Find the rest of this post at its new location:

http://www.trishatorrey.com/2007/10/17/when-dirty-doctors-cant-be-identified/

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Hospital Safety, Dirty Doctors, and Accountability

My friend Helen Haskell forwarded two articles of big interest to those of us who wish hospitals were safer places to be sick or hurt.

Putting Staff in Charge of Safety

The first is the cover story from Hospitals and Health Network Magazine called “Can Your Nurses Stop a Surgeon?” It tells the tale of a surgeon at Advocate Illinois Masonic Medical Center who, ready to operate on his patient, was told by the nurses and surgical technician that he was not allowed to move forward because he had not yet let them run through their pre-surgical safety check, called a “Time Out.”

The surgeon, furious, reached for the scalpel anyway — and found it had been removed from the instrument tray by the staff. Even more furious he stomped out of the OR and contacted the CEO of the hospital –

…..find the rest of this post at the new blog location 

Breast Cancer Misdiagnosis on Today Show: Learnings

My heart goes out Darrie Eason, the woman who appeared on this morning’s Today Show who was diagnosed with breast cancer, had a double mastectomy, and learned later that they had made a mistake — in fact, she had no cancer at all.

In her case, her biopsy specimen was mixed up with another woman’s — and that woman was told she did not have cancer. Of course, for the woman who does have breast cancer, she has now had a delayed diagnosis, too.

I’ve walked in Darrie’s shoes. I’ve faced a horrible horrible cancer diagnosis, and I’ve faced all those demons about treatment choices and prognoses. Then I learned they were wrong — I didn’t have cancer. I wouldn’t wish that horror on my worst enemy.

I applaud the young woman and her attorney. Instead of filing (what Dr. Nancy Snyderman called) a “blanket of lawsuits,” they have gone back through the process to isolate the lab that made the error, CBL Path(ology) Laboratories. They have sued the lab, and have demanded a review of their processes.

CBL Path says one of their technicians took a shortcut that created the error, and that no systemic problems exist at their lab. Dr. Snyderman explained that the error that took place was a result of “batching” — meaning — instead of reviewing one biopsy specimen for one patient at a time, the tech was processing a number of specimens from a number of patients at the same time. Thus, they got mixed up.

(Pardon my cynicism, but throwing one lab tech under the bus does not fix the problem, nor does it improve the results. In fact, a system problem MUST exist, or the short cut could not and would not have been taken to begin with.)

Have you been diagnosed with cancer? or any other disease that is diagnosed based on lab work? Before you make treatment decisions with your doctor, heed Dr. Snyderman’s excellent advice so you can make sure the same kind of mix up doesn’t happen to you.

The idea always goes back to getting a second opinion. In this case, you need to get a second opinion based on your lab work. But here’s the important part — the second opinion needs to be read from the slides developed from the biopsy and NOT from the paperwork!

Like this: lab #1 creates slides from the specimen, decides what the diagnosis is, and records it on paper.

To get an accurate second opinion, ask lab #2 to read the slides to proffer their second opinion, and not just review the paperwork from lab #1.

Would this have helped me? I’m not sure. I was told two labs had independently confirmed my diagnosis — but — I don’t know whether lab #2 read the slides, or read the paperwork from my biopsy. I didn’t even know to ask the question.

So that’s why I share all this with you…. I hope if you are in a situation where your diagnosis is based on lab work that you will be assertive enough to ask that the slides be reviewed a second time.

It’s something Darrie Eason and I share — the hope that what happened to us will never happen to you.

Thanks for the lesson, Darrie. And bless you for taking your message out to those who may face such difficulty in the future.

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