Patient Empowerment

Just a heads up today on an informative, well-developed, interactive presentation put together by a combination of Frontline and Pro Publica...

Called Hazardous Hospitals, it's part video, part resource piece that allows you to learn about the (at least) six ways your assumptions about hospitals are probably untrue, with additional links to supporting information.

It begins with, "Warning: Your Hospital May Be Hazardous to Your Health". From there it goes through why hospitals aren't safe places, (where it also shares personal stories that will break your heart), the fact that hospitals don't share information (which means they can't learn from each other on what works and what doesn't), denial and more. It's a great overview of why we must know what to expect and then plan to protect ourselves while in the hospital.

Finally, the piece called "By the Numbers" at the end of the presentation is truly upsetting.  Statements about what percentage of hospital workers are afraid to speak up when they observe something that can harm a patient, ranging to how often safety violations are ignored and how many believe that "management is only interested in patient safety when something goes wrong."

Keep in mind that these are the hospitals were YOU and I go for care.  My overall impression is that it might be safer to stand in the center of the interstate highway than to spend any time in a hospital.

Watch Hazardous Hospitals and interact with it.  It won't take you more than 10 minutes. The awareness you gain may save your life. (The producers suggest you use either a Chrome or Safari browser, although I used Firefox and it worked just fine.)

Then, when you're ready to learn how to protect yourself, give some of these articles a try:

•  A Safe Surgery Guide for Patients

•  The Patient's Guide to Hospital Acquired Infections

•  Prescription Drug Errors Take Lives

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I've just finished reading an article in Fortune, written by Katherine Eban, that has curled my toenails and singed my eyebrows.

I first introduced you to Katherine Eban after reading her book Dangerous Doses a number of years ago.  Dangerous Doses is about counterfeit drugs, how they work their way into our American drug supply, and how Americans are dying and getting sicker because of the FDA's total lack of teeth and ability to regulate or stop them.  (Not that they haven't figured out some ways to stem the flow - but pharmaceutical companies have intentionally put roadblocks in the FDA's way to protect themselves instead. Follow the money, of course.)

This latest Eban article, called "Dirty Medicine" it is the story of a Ranbaxy, a generic drug manufacturer located in India, that has approval from the FDA to manufacture dozens of generic drugs for Americans, and was, a few weeks ago, fined $500 million for defrauding those Americans who have taken its generics.  Ranbaxy intentionally watered down and adulterated its drugs so they could maximize their profits.

Of particular note is that Ranbaxy supplied in the US $600 million worth of generic Lipitor, called atorvastatin, including the 41 lots that were found to have glass shards in them in 2012.

Now, the fact that any drug company would try to maximize its profits comes as no surprise whatsoever to empowered patients who understand the entire focus of the American healthcare system on money.

Further, remember that a $500 million fine is peanuts compared to the money Ranbaxy made by selling the adulterated drugs. For them that fine is just the cost of doing business.  For us, the cost is life, or quality of life, or death.

When I read about something so heinous, my thoughts begin circling in different directions:

• Where was the FDA for all those years those drugs were being sold to Americans, and harming us (and possibly killing us?)
• That $500 million dollar fine - exactly who gets that money?  Does it go back to the healthplans that paid for the drugs to begin with?  Or even better - to the millions of Americans who took those drugs and may have also paid for them from their own pockets?  I suspect it only goes into the pockets of the FDA.
• What happens on behalf of those people who have gotten sicker or died as a result of taking adulterated drugs?
• There were 7 criminal charges filed. Ranbaxy has admitted wrongdoing.  Why is there no prison time for the Ranbaxy perpetrators?
• How can we trust that any future Ranbaxy manufactured drug will ever be comprised of what it says its comprised of?

And then I begin trying to think of ways we patients can better protect ourselves.  I hate to say it, but there's only one way I can think of.  That is - to insist that if there is any question about where your drug was manufactured, or questions about the company that manufactured it, then instead you purchase the branded version of the drug that was approved to be manufactured in the United States.  There seems to be far more oversight by the FDA within our boundaries. Those companies likely (maybe?) take quality more seriously.

I have a feeling that my pharma-in-the-know friends will think I am naive for making that suggestion. I see them scoffing now.

But I'm putting my money where my fingers are.

I am currently on the second course of an antibiotic I'm taking for Lump #2 called Amox TR-K. It is the generic version of Augmenten.  So far as I can tell, it hasn't done squat. I'm on the second course because the first course did not shrink the lump. Further, I've had no side effects.  My body has shown no indication of any sort of improvement (or detriment) as a result of taking this drug, so I can't be sure there's anything effective in it.

And it, too, was manufactured in India by a company called Aurobindo, which has also, previously, run afoul of the FDA.

Now, of course I can't be sure that my body has not reacted because there's a problem with the drug... but...

I tried to find an American manufacturer of the generic. None that I could find.  I did find that Augmenten, the branded drug, is manufacturered by GlaxoSmithKline.  While GSK isn't one of my favorite drug companies (OK - I don't have any favorites), at least I have more confidence that the drug I'm purchasing will have something in it that works.

So, when I see my doctor again in a few days, I will ask her to write a new script for the branded drug Augmentin.  Then we'll see if there's a difference.

I'll keep you posted.  Also, I would be interested in your stories about generics that didn't do what they should have.  If you can, take the time to look at the bottle with the drug in it.  In VERY VERY TINY TYPE you'll find the name of the manufacturer.  Look 'em up!  See if yours is possibly a problem generic, too.

And, of course, should a problem arise with any drug you take, don't forget to report it to the FDA.  Then we'll keep our fingers crossed that they pay attention.

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Photo - look in the very tiny type for the name of the manufacturer. You'll see it circled in the photo above.

For those of you following my Lump #2 journey, I've posted the next chapter called, Being Assertive Improves CT Scan Accuracy.

Yes - the CT scan provided more information and an encouraging report.  You can even see a photo (the scan image) of the lump itself!

But the real "empowerment" piece was how I handled the request for objectivity when it came time for the radiologist to read the scan....

Perhaps one of the most empowered steps I have ever taken - ever.

Take a read and let me know what you think.

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I would never have proclaimed myself a big fan of Angelina Jolie's - until today.

The announcement that she has undergone a double mastectomy in the face of evidence that she could prevent breast and ovarian cancer changes that. Her decision was well-researched, warranted, and she followed through. I'm impressed, in particular because she has gone public in hopes that other women will learn from her experience.  That makes me more than just a fan.

Jolie didn't / doesn't have cancer.  She had a high risk of it.  She didn't make the choice to have a mastectomy to treat an existing disease.  She had both breasts removed so she won't develop a cancer at a later date. She took drastic, preventive action. I give her big props - just as I give any woman who has or would make the same choice based on the "what if" scenario Jolie faced.  Not easy, but likely necessary and - very brave.

So what can the rest of us learn from her choice?

There are two keys here we can all learn from, no matter what disease we fear, whether we are male or female, young or old.

The first key is EVIDENCE.

Knowing her mother died at age 56 after a long battle with ovarian cancer, Jolie asked to be tested for the faulty gene called BRCA-1 that indicates a predisposition toward developing breast and ovarian cancers.  She discovered that indeed, she did have that gene, and therefore, she had an 87% risk of breast cancer and a 50% risk of ovarian cancer.

Fortunately for Angelina Jolie, such a test - a form of personalized medicine - was available for exactly what her potential problem might be - the genetic test for the BRCA gene. So she moved forward based on the evidence that a double mastectomy would reduce her chances of developing those cancers to only 5%.

In the face of clear evidence with those percentages, she could move forward.  To put it in your own perspective, if you could buy a lottery ticket knowing that you had an 87% change of winning - would you? Still in all, it could not have been an easy choice.

The second key is DECISION-MAKING about getting both or either TESTED or TREATED.

Fortunately for Jolie, every piece of the puzzle that might develop was available and affordable to her.

• The test for that genetic problem has existed for a number of years.
• She could afford the test (around $3000 but only sometimes covered by insurance).
• She knew ahead of time that if it was discovered that she had that gene, and therefore those high odds, that she could afford the cost of of treatment.
• She further knew that if she underwent the treatment, it would likely be highly successful (95% chance now that she won't develop breast or ovarian cancer.)

So the question for the rest of us is - what are WE afraid we might develop? Is there evidence to suggest we might be able to determine whether we are truly at risk?  And if we learn we ARE at risk, is there a way to be treated pre-emtively (also called "prophylactically") that is successful and affordable?

You'll have to answer those questions on your own because there are way too many scenarios to cover them all here. But I can show you how I've asked myself these same questions:

My mother, and her mother (my grandmother, of course) both developed and died from Alzheimers.  (In Gramma's case, it was called 'hardening of the arteries.")  So, of course, I have worried about the possibility I will develop it, too.

So the first question:  EVIDENCE -- there is definitely evidence that Alzheimer's has a genetic component. And there are genetic tests in the pipeline, but nothing widely available for someone like me to be tested.

But suppose there was a genetic test that could tell me with any certainty that I would develop Alzheimer's - would I?

DECISION-MAKING would lead me to the question:  is there a treatment available?

The answer is NO, so even if the genetic test was available, I would not get myself tested.  I have no interest in knowing I might develop something if there's nothing I can do about it anyway.  I can't imagine living with that knowledge without the ability to proactively prevent it.

As time goes on, researchers and manufacturers will develop more and more genetic tests and evidence, and more and more treatments for more and more conditions and diseases.  You can learn more about the state of personalized medicine here, and more about how to make a medical decision here.

Personalized medicine, while it sounds utopian, brings with it its own set of ethical, legal and moral questions, too. So you'll want to understand them before you make decisions how whether you want to move forward.

So until then, talk to your doctor, ask about the evidence, the tests, the possible treatments and affordability - then make your decisions from there.

Like Angelina Jolie, the life and family heartache you save, may be your own.

(You may also be interested in learning more about Angelina Jolie's "previvorship" from the About.com Guide to Breast Cancer, about the surgery itself from the About.com Guide to Surgery and a different perspective from the About.com Guide to Lung Cancer.)

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Last week I had a very informative, and overall delightful conversation with two gentlemen from Crouse Hospital in Syracuse, NY.  Our conversation focused on the experiences of patients who are treated at Crouse, some of the programs Crouse has put into place to help their providers communicate effectively, plus some of the ways Crouse includes patients in their decision-making about those programs and new initiatives.

Derrick Suehs, one of the gentlemen on the call, is Crouse's Chief Quality Officer. As his title would indicate, Derrick's job is to focus on the quality of the care patients receive while they are being treated at Crouse.

At one point, our conversation moved to those times when not everything goes the way it should in the hospital. As you well know, these are things that happen in every single hospital - every one - and hospitals need to develop ways to deal with them so they have as little negative impact as possible. Whether it's an argument between providers, or patients and providers, a medical error, or too much noise in a hallway, or the perceived rude treatment of a patient by someone on the staff - my question was, "What do you do to call attention or correct that kind of problem, or what do you do to try to prevent it the next time?"

Derrick - with his focus on quality of care -  had a simple reply.  "We ask them if their behavior passed the Momma Test."

"The Momma Test?" I asked.

"We ask them - Would it be OK if someone treated your Momma that way?"  was Derrick's reply.

OMG - to me, that is brilliant.  The Momma Test should be used by every hospital, every doctor / provider, every testing facility and every payer.  Because we all want to think our mothers would be treated with the utmost in dignity, respect, and patience.  We all get it.  It's simple in concept, and it's behavior we are taught as young children, so we all know how to procede.

We know it's the right way to treat someone - everyone - and not just our mommas.

Your doctor or other provider, or your insurer, or the hospital staff you have interfaced with -- do they pass The Momma Test?

If they do - tell them they do!  Thank them for their attention to those details that indicate respect, patience and attention to dignity.

And if they don't?  Tell them they don't!  Tell them about the Momma Test and that you hope they'll begin working on it...  They will understand immediately if you ask them, "Would you want your momma to be treated the way you are treating me?

Thanks to Derrick for sharing his Momma Test (and for implementing it at Crouse, of course.)

Do you know of other hospitals that subscribe to the Momma Test?

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Photo © Microsoft Image Gallery

Did you ever think you'd find a soap opera on the About.com Patient Empowerment site?

I realized that chronicling this journey requires more than just a few blog posts - and so I've begun what is, in effect, a grouping of episodes.  Last week I shared Episode #1 with you, describing Lump #2 and how I found it - plus some insight into my emotional make-up going into this need for a new diagnosis and yes, treatment at some point, too....

Now I've added Episode #2:  My First Doctor Appointment for Lump #2

I did meet with my primary care doctor last week - and as you can guess, she sent me for a CT scan.  She made a few suggestions (which I rejected!) and  wrote a prescription I hadn't anticipated, too. No diagnosis yet - but I have a follow up appointment with her in two more days.

Check out Episode #2 and see if you think I can improve upon my empowered approach.

All suggestions welcome!

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Photo © Fotolia.com

Many of you know the story that spawned my career in Patient Empowerment.  You can read it in its entirety here.

The nickel version is that in 2004 I found a lump on my torso (about the size of a golf ball), it was removed, I was diagnosed with a rare, terminal form of cancer and told I had only a few months to live.  But my intuition (and probably some desperation, too) told me something was not right. I then doggedly pursued a second opinion, researched the heck out of my medical records (pathology reports) and eventually learned that, in fact, no - there was no cancer. I have never had any form of treatment, and here I am, still telling my story - and helping others improve their outcomes, too.

For nine years, until last week, part of the story included the words, "And I've never had another lump."

You should know that I have given a lot of thought as to whether I would write about this new lump, and if so, when I would write about it.  Maybe never? Or maybe when it was actually diagnosed? or I was finished with treatment?

I finally decided that one theme in my work is the idea of transparency - and if I was going to demand it from others, I should be willing to be transparent myself.

And so I will be... and I have begun keeping what is, in effect, a journal of dealing with this new lump.  My symptoms, my emotions, my preparation (as an empowered patient) for my doctor appointment.  I'll keep you informed during the diagnosis, and then treatment - the decisions I make in collaboration with my doctors....

Here's episode #1:  A Second Lump Begins a New, Empowered, Smart Patient Journey

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Photo - yes - that's Lump #2. Doesn't look like much, does it?

Suppose you go out for dinner to an expensive restaurant. You order a roasted chicken dish that just melts in your mouth... yum!

But do you care how much money it cost to buy the oven that roasted that chicken, or how many bells and whistles that oven has on it?  Would the roasting heat have been any different just because the oven has a few extra dials on it?

Or - suppose you decide to build an addition on your house. You get cost quotes from three different contractors, and one of them comes in quite a bit higher than the other two.  You're curious about the difference, so you ask why that quote was so much higher.  The reply, "My crew uses triple-tempered and reinforced, therefore more expensive tools when we work which guarantees you a higher quality addition."

Does it? Do you really care if that contractor paid more for his tools?  In what way will that make your house addition a higher quality?

Or - tax time - you go off to your tax preparer and even though this year's tax return is no more or less complicated than last year's, your bill for doing this year's taxes is $350 more.  "Why so much more?" you ask, to which your preparer replies, "I bought a new, faster computer."

Wow. Even though it saved her some time, your accountant is charging you more because she used a new computer.  Seriously?

Enter surgical robots.  You've heard of them - if not in the news, you've heard of them in advertising from your local hospitals.  They strut out these great robotic tools as if they make surgery so much - what - better?  safer?  easier to recover from?

Except, as it turns out, they probably don't.

But they do ONE thing.  They drive the price sky high!

About a year ago I wrote about one of the earliest reports of this not-so-fast-on-the-"better-by-robot" phenomenon (with a confession thrown in, too: Taking Myself to Task Over Robotic Prostatectomy)  The problem is this:  the manufacturers of the robots have been touting how much better and safer surgery is for patients on whom the surgical robots are being used. They've trained tens of thousands of surgeons, most of whom truly enjoy using these new, multi-million dollar tools (my mother used to tell me that the difference between men and boys was the price of their toys), and they've sold thousands of these robots to hospitals and provided them with great marketing materials so those hospitals can promote their use of the robot...

What a snow job!  All we really needed to do was to follow the money.

What no one (including me!) seemed to be questioning was the comparisons being made.  Turns out, in order to come up with the "safer, less invasive, less loss of blood, quicker discharge, faster healing, etc etc" descriptions, the robot was being compared to traditional surgery.  Instead, the robot should be been compared to laparascopic, minimally invasive surgery - because that is, in effect, what it is.

So - oranges to oranges, it turns out those robots aren't all that - not at all.  Not only are patient outcomes (as compared to minimally invasive surgery) no better, but in some cases, patient outcomes are worse.

Plus, use of the robot is far more expensive.  If you are the hospital, and you've invested in one of those million+ dollar robots - you've got to pay for it somehow!  And don't think that if robotic surgery isn't a consideration for you that it therefore isn't costing you anything... because it is.  Until now, insurers have been reimbursing at those higher rates for the use of the robots (they've been snowed, too!) - and when insurers pay out more, we all pay more.

So what does this mean for empowered patients?  A few thoughts:

1. Don't "fall" for the idea of the use of the robot.  Studies show it probably doesn't improve anything for you over that minimally invasive approach.  (See reports from the Wall Street Journal, NPR and USA Today.)

2.  If you or a loved one require surgery, and the surgeon insists on use of the robot, then ask about the cost first. If you have Medicare it may not make a difference in your out-of-pocket costs, but if you have private insurance, it may make a huge difference.  Ask your insurance company, and if they balk at giving you an answer, stick with it.

It's easy for all of us to fall into that trap of thinking that technology makes things better. But as we continue to learn, that's not always the case.  Part of being an empowered patient is knowing when to ask the right questions, then to look between the lines of the answers.

Looks like we've all learned from this one.

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We all have them in our bathrooms, medicine cabinets, even in our dresser drawers, linen closets or kitchen cupboards - drugs (prescription and over the counter) that we never finished taking.  We might have suffered untenable side effects and stopped taking them, or maybe they were pain drugs that we no longer needed. Perhaps they are old cold or flu remedies that are outdated, or birth control pills that - well - we changed our minds and decided to get pregnant!

You probably realize that disposing of these drugs can become problematic.  Just flushing them has a huge, negative impact on the environment (have you ever seen a two-headed fish?) Simply tossing them means they can be fished out of your trash by someone who's looking to get high. It could be that your teenager has been popping them without you realizing it.

The US Drug Enforcement Administration (DEA) twice annually holds it's National Take Back Collection - an opportunity to safely and legally dispose of unused drugs. This weekend, Saturday, April 27, 2013 is one of this year's collections.

So it's time to round up all those extra drugs - pills, tablets, capsules, liquids, lotions - any drug! - to take it for collection.  That way you don't have to worry about whether you are disposing of those drugs properly or not - because the DEA will take care of them for you.

•  Here is more information about the initiative from the DEA.

•  You can search for collection locations near you.

•  Learn more about proper disposal of drugs (and needles and sharps) if you've missed the collection date or won't be able to participate.

•  Not sure what that drug is?  Here's a way to identify pills, tablets and capsules.

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Seems like recently we're finding plenty of NEWS about retailers and their approach to healthcare; their attempts at cashing in on Americans' new found interest in healthcare that probably results more from the upcoming shift to Obamacare than any other reason. As long as we are paying attention, why not profit from it?

One week I wrote about new health kiosks that can be found at Walmart. They provide "free screenings" and feedback on individuals' input about their own health.  My bottom line - know what you are getting into with these kiosks!  They will violate your privacy from here to eternity.

Another week I wrote about Walgreens and their new walk-in clinics, being staffed by nurse practitioners. They are like the doctor's office, except that you can not only get your diagnosis and a prescription, but you can fill your prescription right there, too. My bottom line - for the majority of acute reasons we need a primary care visit, a Walgreens walk-in clinic might be a great answer.

But one of my regular readers, Cindy, took umbrage with my seeming approval of Walgreens over Walmart - as if I was choosing sides...  Cindy objected to me saying good things about Walgreens while I dissed Walmart.  I realized that if Cindy wasn't grasping the differences, then others might not see the difference either. Thus this post.

First please know that I'm as big an overall fan of Walmart as I am of Walgreens. As a regular shopper at both, I find them both just fine.

But when it comes to healthcare, there's a huge gap in PRIVACY - which must remain intact at Walgreens due to the nature of their clinics and isn't even a consideration for Walmart.

Walmart's kiosks are simply computers that collect information about individuals. The owners can do whatever they want to with that personal information. The companies that make these kiosks, and Walmart which places them in their stores, are not "covered entities." They have no need or requirement to keep any of the collected information private. They can sell it, use it, market with it - anything. I expect that if they wanted to, they could sell that information to your neighbor, or your boss - anyone.

On the other hand, Walgreens has set up bona fide clinics, staffed with licensed professionals, all of whom are considered "covered entities, covered by HIPAA.  They must follow the law when it comes to keeping your records private.  They can use the information themselves, and if you request your records, they must provide them to you, but that information cannot be shared or sold to anyone else.

BIG difference.

The truth is, HIPAA privacy laws are full of holes.  (see 11 myths about HIPAA) - but to the extent Walgreens must function within the law, your information will be far more protected through use of Walgreens' clinics than it will be through Walmarts' kiosks.

Hope that clarifies!

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