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I heard from a gentleman today who has been put in a very frightening position.

It seems that several years ago, this man (I'll call him Sam) became paralyzed from a series of other problems.  It took a year or so to sort out the medical reasons for his paralysis and to determine a treatment.  Eventually a drug was discovered that helped him get his mobility back.  We'll call this the Successful Drug.

Sam's insurance company is having a fit because the Successful Drug is quite expensive.  They have decided to make him change drugs to something Sam is having trouble getting information about.  To Sam, who suffered through a year of paralysis while the Successful Drug was selected, now faces the unknown.  How can he know whether the Replacement Drug will keep him mobile?

Sam's question to me was whether I knew of any place he could get information that compares the Successful Drug to the Replacement Drug.

I sent Sam a few links -- to a couple of prescription drug websites (you can find them in the Resource Library at DiagKNOWsis.org ) and also to the websites of the companies that manufacture both the Successful Drug and the Replacement Drug.

But I also explained to Sam that the people with the best information will be the drug reps that teach the doctors about their drugs.  And this is good information for you, too.

The job of a drug rep is to convince a doctor that his/her company's drug is superior to its competitors, and to understand the biology, chemistry, physiology and pathology behind those reasons.  To that end, the Reps are provided with plenty of materials to give to doctors to help doctors understand those comparisons.

Sometimes those materials will be understandable to a patient with no training, and sometimes they won't.  But a sharp patient will ask the doctor for those materials if s/he thinks they can be helpful. 

In Sam's case, those materials could be extremely helpful as he prepares to either go along with taking the Replacement Drug, or fight the insurance company's decision.

Sam -- if you find this blog -- good luck!!  I'll be interested to see how you make out with this process.  My prayers and thoughts are with you.

Yes -- tomorrow is Thanksgiving and it's an opportunity to thank those people who have helped me make this transition into advocacy work.

Thanks to Amber Smith and her editors at the Syracuse Post Standard for helping me get started with my column.  You can check them out  -- link here.

Thanks to Melanie Rich and her marketing group at University Hospital for trusting me to host their radio show.  I have a ball with it, I'm learning so much, and it's been a real opportunity for me to share some of what I've learned, too.

Thanks to Peg Gutowski and her group at HealthLink for giving me the opportunity to address different groups about various patient advocacy topics.  Thanks, too, to the folks who stop by to listen!

Thanks to my husband, daughters, and parents for their love and support while I've made this huge career transition, too.  I appreciate your love and patience!

And thanks to you, my readers -- for your ideas, your support, you good advice and feedback.  I hope to continue providing you with ideas, and food for thought.

And "food for thought" makes me think of Thanksgiving dinner!

Yum.  :-)

This morning on my  radio show, I told my listeners about the ICE program -- ICE, in this case, stand for "In Case of Emergency."

Have you heard about it?  It's a plan for inputting your emergency contact information into your cell phone so that EMTs or anyone who takes care of you in an emergency, and who needs to contact your next of kin and doesn't know who that is, can do so.

Read more about it on my EPA website:  http://everypatientsadvocate.com/columns/1106-HLOA-ICE.htm

Hey -- it's always good to be prepared, right?

There's an article in MSN's Health section today, called "When I Was Wrong"  by Dr. T.E. Holt, who talks about how sometimes he jumps to conclusions before he really understands what a patient needs, or why a patient tries to get his help.

First -- I give credit to Dr. Holt  for admitting that "as important as they are, first impressions can be wrong."  He's so right.  He continues, "If it's wrong, you can end up being categorized in ways that can do you harm."

Dr. Holt -- thank you!!  But Dr. Holt -- this is not new!

And patients -- WE are the ones who must insist on change!  Doctors are comfortable with the way they have done business for so long.  But we, as sharp patients, must insist they NOT jump to conclusions, that they LISTEN to us!

My next book chapter (see below) is about teaching our doctors to listen to us, and about putting together exactly what the doctor needs to hear from us, too.

Want to be notified when that chapter is done?  I'll let you read it early!  Link here to sign up for notices --- it's worth it, I promise.

I've been working on my book -- my typing fingers have never been in such good shape before!  The chapter I'm working on now is the one about getting one's doctor to listen.

I could use some stories -- anybody have one to share?  Have you ever felt like your doctor wasn't listening to you?  If so, I'd like to include you in my book.  I won't use your real name, nor will I use the name of your doctor.  But real stories are at the heart of my writing -- because we can all relate. 

If you do have a story, just click on the Comments envelope below.

You Can Help, Part II! Want to send holiday cards and help children with cancer and blood disorders, too?  University Hospital, in support of the now-being-built Galisano Children's Hospital in Syracuse, NY, is selling cards that have been designed by some of their patients. Learn more here:  http://www.upstate.edu/events/kid_cards06.php A great cause!

I heard this morning from a woman who is advocating for her friend.  I'll call her Frieda.  Frieda is upset because she feels her friend, who has recently been told he will die from lung cancer, is not getting the best treatment.

Frieda's friend has grave medical problems, including cancer in two different parts of his body.  In addition, he is sick to his stomach constantly.  Frieda asked about whether she should seek a second opinion, and even a third.

Frieda doesn't want her friend to die -- and she is looking for anything at all to help him.  I applaud her for caring so much, and I'm very pleased that she cares so much that she would be looking for alternatives. She needs to be sure he's getting the best advice and treatment he can get -- and she's worried that he isn't.

But I also worry that Frieda's expectations -- or at least her hopes -- are more about her investment in the thought that he might not be getting the best treatment, and less in the reality of the fact that he is a very sick man. 

I've replied to her with some thoughts -- and they are worth sharing with you, too.

His stomach pain -- it may not be related to inadequate treatment (as Frieda told me she thinks it is) -- and it may be because the drugs he is being given are upsetting his stomach.  Drugs are a two-edged sword and the side effects have to be balanced against what they may cure, or improve.  I've suggested she ask that question of the doctors -- if his stomach pain is related to the drugs. 

A second opinion -- is often valuable, and definitely worthwhile here.  However, because Frieda is not a spouse or relative, she may not be able to make those arrangements for her friend. 

If she is able to arrange for the second opinion -- she needs to take all his records and test results, and be prepared with a concise list of questions for the doctor.  Frieda's email to me was a jumble of statements and questions.  She is clearly upset (who wouldn't be?) and it was very hard for me to wade through her information.  That said -- her thoughts are good, if they can be organized.

If they do get two opinions -- if those two opinions differ greatly, then they need to find even a third opinion.  If the two opinions are similar, or differ just a little bit, then they should ask the two doctors to talk to each other.

Finally -- Frieda needs to manage her own expectations of what they will learn if they do see a second opinion doctor.  That's where the wishful thinking caveat comes in.  If they get good news, great!  But based on her email to me, he's a very sick man, in a great deal of pain, and good news may not be what they hear.  I hope they won't be even more upset when they get a second opinion.

How often does wishful thinking affect our approach to our medical care?  If we use wishful thinking to help us gain more information, and empower us, then that's great.   But if not -- if we use it to cloud our decision-making, then it can even get in the way of improved health.

If you're in Central New York State (I know -- most of you aren't -- which means you probably aren't the hale 'n hardy type like those of us who live in this tundra land where the annual snowfall --average! -- is 150 inches!)  But I digress....

I'll be on Hour CNY on WCNY-PBS TV here in Syracuse.  I'll be talking about the top 3 questions patients ask me.... so tune in, if you can!

And if not, you're forgiven.  Get a sneak peek at what I'll have to say by linking here.

See you on the tube!

I was invited to speak to a group of seniors at their bi-monthly luncheon at Robinson Memorial Church yesterday.   Seems like there must have been a hundred people, very pleasant and very receptive.

The topic was about how to talk to one's doctor, and how to find the right doctor.  That was a tall order for only 45 minutes -- but -- we covered it pretty well and I know some folks learned a few things.

They were surprised to realize that healthcare is not about health or care -- it's about sickness and money.  But using their own experiences, I made them realize it's true. 

They were surprised to learn about the insurance companies' six minute rule -- that doctors can only spend six minutes with each patient, or they can't get reimbursed what they deserve.

They were surprised when I told them to stop an interrupting doctor, and ask him to be patient and listen to them.

And they understood when I explained that they need to be concise when they describe symptoms and experiences to their doctors.  Why waste their six minutes on details that are unimportant?

I hope I am invited to present this same program again.  Yesterday's group was definitely empowered.  They'll be thinking twice with each visit to their doctors from now on.

I spent a few hours at WCNY (PBS TV) yesterday as an audience member for a TV show that will be aired November 28 here in Central New York state.  Entitled Evolving Medicine, Emerging Choices, it was a fascinating panel discussion about the marriage of conventional and alternative approaches to medicine, and the controversial issues that surround the adoption of this "integrative medicine" by the doctoring world.

I came away with these impressions:

1. That my stance that the current state of American healthcare is not about health or care -- it's about sickness and money -- is right on target.  If you could have heard the dancing around the issue of insurance coverage, by Arthur Vercillo, MD, the CMO of Excellus, you would agree.
   
2. That the blending of the two approaches is too slowly, but steadily, gaining acceptance and that perhaps the aging of US doctors, and their replacement by younger doctors,  is not only a fact of life -- it's going to be very good for patients.
   
3. That there are doctors who sincerely believe that patient-centered care is the right thing to do.  I liked Dr. Neulander's description -- he suggested that the patient should be looked at as the hub of a wheel, and their care options should be traced by the spokes, with the patient making the choice of which spokes to follow.
   
4. That Dr. Les Moore, from Clifton Springs Hospital, is a hoot!  He's also a walking dictionary.  And as far as holistic medicine?  He REALLY gets it!
   
5. Integrative Medicine is truly what "patient-centered" care is all about.

There were dozens more important impressions... I wish I could share them all.  Certainly upcoming Post Standard columns will reflect what I learned.

Finally,  BIG BIG kudos to my friend Wendy Meyerson from Natur-Tyme for pulling this all together.  Wendy -- your dad would be so VERY VERY proud of you!  And, no doubt, he is. :-)

Helen, my friend and fellow advocate in South Carolina, keeps me on her email  list of headlines she thinks we advocates will be interested in.  Each day there is some startling headline about misdiagnosis or a medical error, or scary death statistics, or lawsuit results or some other jarring piece of information that saddens and scares me.

But one of this week's articles has been particularly disturbing.  It was a story about the errors reported in arguably the most respected of medical journals, The New England Journal of Medicine.  This report relates to Vioxx, the fact that there were conflicts of interest in the research that ultimately resulted in Vioxx's approval by the FDA, and the resulting loss of lives to what turned out to be poison for many.

Here's the article: A Prescription for Trouble

Conflicts of interest?  Of course.  Those who know me, or have ever attended one of my workshops know that I talk about the fact that healthcare does not exist in this country.  It's not about healthcare, it's about sickness care.  And even sickness care is not about care -- it's about money.

MONEY.  Yes -- and now it seems even the esteemed New England Journal of Medicine is a "victim" because they published the results of a study which was driven more by money than real interest in human beings.

Doctors get a lot of their current information from the NEJM.  They have always trusted it for its integrity and its vetting of research prior to publication.  Will they stop trusting its articles?  Will they stop reading it, and therefore be more challenged to keep up with research and technology?  And will your care suffer because they can't be sure whether what they read is true?

I hope the outcome is healthy skepticism.  And I'm thinking that just like flying in a plane right after another one has crashed is safer from raw precaution, the NEJM will probably be fanatical about double checking the research it publishes.

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