“They say the camera adds 10 pounds. OK. So I figure I must be standing in front of 10 cameras.”

Oh, yes, Al. I know how you feel….

However — I’ve decided to come out of my video-avoidance closet to share the following with you all.

First — my excitement at the invitation a week ago to appear on MSNBC to speak to a problem that I actually cited a few years ago – that July is the worst month of the year to be hospitalized. Why? Watch and see!

Visit msnbc.com for breaking news, world news, and news about the economy

(Even got my two cents in about hiring patient advocates!)

So that’s the first one.  But if I’m going to jump in to the world of video, I might as well do it with both feet.  Many of you know that I am brought in to speak at various conferences and meetings across the US and Canada.  I enjoy speaking!  So in my attempts to do even more of it, I’m told I need to have a professional video made.  So, yes, I finally bit that bullet, too, and have uploaded the online version of the opening here.

It’s not like I’ve never done TV before – I have done local TV on a number of occasions.  And broadcast isn’t the problem – ferheavensake, I have hosted a radio show for 4+ years!  But video, in general, has just always been a step I’ve avoided.

Until today.  So, OK, I feel better now.  [[gulp]]

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There’s so little I can say about swine flu that hasn’t already been said.  And to that point, I’ve already said plenty!

In fact, I’ve said it all on my About.com Guide to Patient Empowerment, so I figure it’s best just to give you a master list of all the articles I’ve written, by topic:

H1N1 Swine Flu 2009 – 2010 Frequently Asked Questions

H1N1 Swine Flu – Plan and Prepare to Get the Swine Flu

Should You Fear Pandemic Swine Flu?

When Is Time to Call the Doctor for a Swine Flu Drug?

Should I Call In Sick or Go to Work

Swine Flu Vaccine FAQs – FAQs About Novel H1N1 Swine Flu Vaccine and Vaccinations

Side Effects and Other Problems Caused by Flu Vaccines

Swine Flu Myths – Facts, Fiction and Fraud about Swine Flu

Is It Time to Throw a Swine Flu Party?

Bogus, Counterfeit or Unapproved H1N1 Swine Flu Products

H1N1 Swine Flu – Review of Pandemic H1N1 Swine Flu Rumors and Theories

Confirm or Debunk H1N1 Pandemic Swine Flu Conspiracy Theories

Swine Flu H1N1 – Swine Flu H1N1 Websites and Resources

And blog posts that link to additional resources:

Can You Buy Swine Flu Vaccine on the Internet?

Why Not Just Assume You WILL Get the H1N1 Swine Flu?

H1N1 Swine Flu – A Heads Up on More Fraud

Just Assume It’s the Swine Flu

How Healthcare Reform Could Prevent the Spread of Swine (or any) Flu

H1N1 Swine Flu Update – Vaccines, Clinical Trials and Elmo, Too

Swine Flu — and the Crooks Lie in Waiting

Green Monkeys and the Swine Flu – Is the World Doomed?

Have I missed sometime you’d like to read about?  Let me know!  blog(at)EPAdvocate.com.

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As predicted, the fearmongering, half truths and out-and-out lies about healthcare reform have begun in earnest.  I received an email from a dear and respected friend yesterday and was appalled at the dis-information it contained.

So I’ve decided to share the email with you and show you where it is wrong and why you need to question anything you hear in these kinds of emails, blog posts and other pieces you may read.

The email, called SENIOR DEATH WARRANTS is printed here in its entirety.  I’ve footnoted my responses below.

The actress Natasha Richardson died after falling skiing in Canada. It
took eight hours to drive her to a hospital. If Canada had our healthcare she might be alive today. In the United States, we have medical evacuation helicopters that would have gotten her to the hospital in 30 minutes. (untrue – see comment 1)

In England anyone over 59 cannot receive heart repairs or stents or bypass because it is not covered as being too expensive and not needed.  (untrue - see comment 2)

Obama wants to have a healthcare system just like Canada’s and England’s. (untrue - see comment 3)

I got this today and am sending it on. If Obama’s plans in other areas don’t scare you, this should! Please do not let Obama sign senior death warrants!!

Everybody that is on this mailing list is either a senior citizen, is
getting close or knows somebody that is.  (true!)

Most of you know by now that the Senate version (at least) of the “stimulus” Bill includes provisions for extensive rationing of health care for senior citizens. (untrue – see comment 4)

The author of this part of the bill, former senator and tax evader, Tom Daschle was credited today by Bloomberg (untrue - see comment 5) with the following statement:

Bloomberg: Daschle says “health-care reform will not be pain free. Seniors should be more accepting of the conditions that come with age instead of treating them.”
(untrue – see comment 6)

If this does not sufficiently raise your ire, just remember that our esteemed Senators and Congressmen have their own healthcare plan that is first dollar or very low co-pay which they are guaranteed the remainder of their lives and are not subject to this new law if it passes. (true!)

Please use the power of the Internet to get this message out. Talk it up at the grassroots level.

We have an election coming up in one year and nine months, and we have the ability to address and reverse the dangerous direction the Obama administration and it allies have begun and in the interim, we can make their lives miserable. Lets do this! (see comment 7)

Comment 1: Natasha Richardson fell and hit her head, and refused to be taken by ambulance to the hospital.  No one can be treated if they don’t seek treatment.  Yes, later her husband phoned for help, but by then it was too late.  Could they have taken her by helicopter for help if she had been in the US?  Maybe — but we will never know.  This form of condemnation of Canada’s healthcare system is purely speculation.  No matter what country anyone lives in, they won’t get care if they refuse help.  News articles indicate that helicopters are available for transport in many areas in Canada, but not remote areas.  That is true in the US, too.

Comment 2: I went straight to some doctors in the UK for this answer ( I network with many doctors in England on Twitter.)  They assure me that there is no such policy.  One even asked me “is that a serious question?”

Comment 3: I have scoured the Internet and can find no where where any bona fide news organization has reported that Mr. Obama has made any such statement.  There are blogs, comments and editorials on some news websites, but no hard news anywhere that reports this statement or any statement like it.

Comment 4: The stimulus bill has nothing to do with quality of care or delivery of care.  It does contain $57 billion for development of an electronic medical records system which will eventually cut the cost of care and will improve the safety and delivery of care.  Will rationing take place?  Of course it will.  It already does.  But that has nothing to do with the stimulus bill!

Comment 5: Bloomberg has never quoted Tom Dashle saying any such thing!  I checked in with one of my favorite resources, Politifact and they spell out exactly how this rumor came to be.

Comment 6: In fact, that quote came from Betsy McCaughey in the form of a letter to the editor.  And while I have admired Dr. McCaughey’s work in hospital acquired infections for many years, I believe she is WAY off base by making such a statement.  Inflaming an already contentious argument does not help. (Update: McCaughey is truly going off the deep end, now making statements that the healthcare reform will will make it mandatory for Medicare recipients to go through required counseling to tell them how to end their lives sooner.)

Comment 7: Healthcare reform is going to happen.  We can make it easier on ourselves by dealing in the truth, and helping the cause.  Or we can make it far more difficult on everyone by fearmongering and inflaming.  Sending an email full of half-truths, lies and speculation doesn’t help!  If you truly want to get involved at the grassroots level, then I ask you to instead contact your local congress person and share your feelings about what is important to you.

Read more about the Senior Death Warrant at my About.com blog.

……………………………..

Do you have concerns about healthcare reform?  Have a rumor or concern you want clarified?  Pose it here and we’ll try to uncover the truth.

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I say – we have not overreacted – but I worry about Chicken Little.

The initial reports from Mexico indicated real potential for problems.  Governments, WHO and the media were in a d*mned if they do and d*mned if they don’t position:  Had they NOT reacted, then I guarantee you, the flu would have spread faster, further and more people would have died.  Then they would have taken the hit for not reacting appropriately– like George Bush deservedly did for Katrina — and we would all be left behind cleaning up behind the mess.

So I believe the reaction and the hype, and the reminders about the impact seasonal flu has on all of us, are warranted. I, for one, appreciate it.  Lives have been saved.  Awareness has been heightened.

That said…

I actually have more concern about the next time around. Whatever virus mutates, whether it be bird flu, swine flu, or hippopotamus flu — no matter which one it is — will we all be (pardon the pun) immune to the hype?  Will we ignore the governments and media who try to prepare us to keep us safe?  Will we go about our daily business tuning them out?  Will we turn a deaf ear because “remember swine flu?  no big deal!”

Chicken Little (who may be carrying bird flu, by the way) reminded us that the sky CAN fall when we don’t pay attention.  So the real point is that we need to be prepared with falling-sky contingency plans.  That’s what WHO does.  That’s what governments do.  That’s what media reports.

We just need to be sure we pay attention and take action, regardless of how hype-y it seems to be.

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Note:  Swine Flu FAQs updated daily

Plus:  Should We Be Afraid of Swine Flu?

While the professionals provide us with statistics about Mexico, Texas, California or other places where patients have contracted swine flu, I actually find I have different questions all together:

• I don’t live in Mexico. Am I at risk for getting swine flu?
• Will my seasonal flu shot protect me?
• I’ve never met a pig in person and don’t expect I’ll meet one anytime soon. Should I be worried about getting flu from a pig?
• And what about my favorite Sunday breakfast – bacon and eggs?

So I went in search of the answers, believing that if I have those questions, you might too.  So I put them together in an article along with their answers: Swine Flu FAQs

And as for breakfast?  Very crispy please.

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I share it with you today, because it provides two lessons for us.  First, that whenever we access medical information, we must be sure we are assessing it objectively, and getting objective information from it.  And second, because it reminds us that medicine is so very personal, that almost no medical information can be completely objective.  Even those strictly scientific medical research results we find?… they were biased to some extent when they were designed.

Among those of us who bring you patient empowerment and patient safety information, we do try to be as objective as we can.  But…… well….. read what Dr. James has to say…. )

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Healthcare Journalism and Truth

A perspective article in the New England Journal of Medicine gave me a dose of my own medicine to ponder. Susan Dentzer, a medical journalist, poses important questions about the role journalists should assume in communicating information to the public.6 To what extent should the big picture be conveyed? How far can one go in sensationalizing a reported medical discovery? Is the story I am writing something my readers might use to determine their own care, and if so do I have a responsibility to be more careful? How far should I go in mentioning caveats to the reported results? Have I over simplified the results to keep my story short?

I have chosen to become a medical journalist in a most unconventional way. I am neither a journalist in the usual sense, nor am I a medical caregiver. I am only a medical scientist trying to communicate to my readers the important patient safety findings that appear in selected medical journals. I am not making a living as a medical journalist. I do this because my heart has been broken by uninformed and unethical medical care, and I do not want this to happen to others.

My stories are intended to be useful to readers in their own medical care and to be useful in informing ordinary folks of risks associated with healthcare. I must ask myself, am I writing in a balanced, objective and clear way? I honestly struggle with these issues at times. Medicine is incredibly complex and placing new information in perspective is not easy. If I seem at times to give medical advice, this is not my intention. I seek to convey scientific facts to you that will help you ask the right questions of your doctor. I’m not a physician, and I don’t pretend to be one.

Am I biased in my reporting to you? As much as I want to be objective, those of you who have read my book know that I think we have an unethical, dangerous and profit-driven healthcare industry. I will do all I can to expose examples of these problems and show how we might one day have an ethical, cost-effective, inclusive, and trustworthy healthcare system. I am biased that way.

As careful as I try to be, I will make errors of perspective and balance in my stories. For all the criticism I level at the American healthcare industry, I too shall err.

~ @ 2009  John James, PhD

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See this icon?  It means this link includes an opportunity for you to participate, beyond just a comment.  However, please remember that your comments to any article or post are always welcome.

This icon indicates a piece that has attracted a lot of attention.

Blog Posts ………………………………..

• A Real World Example of Big Pharma’s Real Motives
• got Peanut Butter? Where to go from here…
• Preparing to Go Red for Women – Learning About Women and Heart Disease
• Was Brazilian Model Mariana Bridi Misdiagnosed?
• Peanut Butter, the FDA and Prayer
• Medical Headlines – Who Says Which Ones Are True and Helpful?
• Pharmacies Sell Your Information for Marketing Purposes
• Are You a Social Networker? Facebook, MySpace, Twitter or Others?
• A Different Perspective on the Sale of Wellsphere
• Is Google Strong-Arming the Feds to Allow Sale of Health Information?

Articles ………………………………..

• Become Your Own Advocate… from the Sarasota Herald Tribune
• An Alphabet Soup of Healthcare Professionals… at PatientAssistance.com
• Using Social Networking to Improve Your Health… at About.com
• FAQs about the Peanut Butter Recall… at About.com
• Can You Improve Your Doctor’s Bedside Manner?… at About.com

Radio (Podcasts) ………………………………..

HealthLink on Air Guests — January 25:
Dr. Jeremy Shefner on Lou Gehrig’s Disease (ALS) and Sharon Bauer, RN on Peripheral Stem Cell Transplants, plus review of a headline about premature infant deaths by Dr. Dave Smith, president of SUNY Upstate

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You can’t imagine how much grief I’ve taken for that statement.  Especially when I point out that organizations like the Mayo Clinic and the Cleveland Clinic are actually partnering with the likes of Microsoft HealthVault to put patient’s personal medical records on the web. 

And I still say — NO!

Wait!  You say.  Isn’t that what our new Obama-led government wants us to do?  Electronic Medical Records are good for our health!  They are good for our economy!  They are good for our country!

Not so fast!

First — the distinction between those EHRs, electronic medical records that are kept by practitioners — doctors, hospitals, nursing homes.  They use proprietary programs that may allow access to patients, but are not set up for patients to add their own information.  These are the kinds of records being promoted by our new government, and I say — go for it.  Great idea.  They will save lives and grief.

But there is another kind of record known as a PHR, personal health record.  There are a dozen ways to keep records, including on your own home computer or on a thumb drive, or even in a shoebox. And, they can be kept online for those who are willing to fill out tons of forms and scan and upload some of their information.  Some programs exist that charge a monthly or annual fee.  Not expensive, but enough that you can at least trust your information with them (as well as it can be trusted anywhere — another conversation for another day.)

But some of those big online health groups like Google, Microsoft, Revolution Health and others want YOU to put your OWN information online.  and — lucky you!  They’ll give you the space online for free!

You know there’s no such thing as a free lunch.  And there’s no such thing as free space online for your health information.  And while I’ve said that for years, and while many have dissed me for doing so — the proof is now published.

The problem is that these companies want to sell your information to the highest bidder.  Maybe they can sell it to a pharmaceutical company or a drug store chain. Maybe they’ll sell it to the Medical Information Bureau that will tell its member-insurers what your medical problems are (so they can decide not to insure you.) Or maybe your employer wants to know whether to keep you on staff, or even hire you to begin with?

Believe me, despite what they claim they “want” to do for those unsuspecting people who put their health information online — their real goal — the goal they MUST have (by law because they are beholden to investors) — is to make money.  They are not offering you that space out of the goodness of their hearts.

And now, it turns out that not only do they want to sell our information, Google hopes to get a piece of the federal money pie being set aside for electronic health records, too?

I’ve said it before.  I’ll say it again.  If you want your health and medical information to stay private, then STAY AWAY FROM THE FREE PERSONAL HEALTH RECORD applications.  It can’t be any plainer than that.

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In her most recent article, she points to doctors’ and nurses’ scrubs, coats, ties — their clothing.  MRSA, C.Diff. and other infectious pathogens cling to the fabric and get passed from patient to patient.

So — imagine that for a moment — the doctor brushes you with his white coat, that very item that represents his/her MD-dom — and passes an infection on to you which will make you very, very sick, or even kill you.

From Dr. McCaughey’s article:

The problem is that some medical personnel wear the same unlaundered uniforms to work day after day. They start their shift already carrying germs such as C.diff, drug-resistant enterococcus or staphylococcus. Doctors’ lab coats are probably the dirtiest. At the University of Maryland, 65% of medical personnel confess they change their lab coat less than once a week, though they know it’s contaminated. Fifteen percent admit they change it less than once a month. Superbugs such as staph can live on these polyester coats for up to 56 days.

Do unclean uniforms endanger patients? Absolutely. Health-care workers habitually touch their own uniforms. Studies confirm that the more bacteria found on surfaces touched often by doctors and nurses, the higher the risk that these bacteria will be carried to the patient and cause infection.

According to Dr. McCaughey, hospitals used to provide laundered uniforms and scrubs to their personnel, but that practice has gone by the wayside.

So, it seems like it would be a good practice to bring back.  Especially since Medicare is no longer paying for care for patients who acquire infections in the hospital, it seems that laundering that clothing would be far less expensive than having to eat the cost of caring for so many infected patients.

Today’s second warning comes from Bottom Line Health, one of my favorite publications.  I like Bottom Line because it doesn’t accept advertising, and it always brings in multiple points of view, e.g. the best of Eastern and Western medicine and ideas.

This notation comes from Jean-Yves Maillard, PhD from Cardiff University in Wales, UK who tells us that those disinfectant wipes we use on surfaces to kill bacteria (think clorox wipes, or those wipes they put near the shopping carts at supermarkets) may actually just spread those germs around.  We may not be killing those buggers at all!  Dr. Maillard suggests instead that we use one wipe per surface — or one swipe per wipe.

When it comes to these killer germs, we patients just can’t be too careful, can we?

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SPTCL, subcutaneous panniculitis-like T-cell lymphoma, was the rare and deadly lymphoma that kick-started my work as Every Patient’s Advocate.  I was told I had it.  In fact, I was told by two labs and an oncologist that I had it, and had only a few months to live.

But I didn’t.  And I’ve written extensively about the fact that I didn’t have SPTCL and what I did to figure that out.

Earlier this year, in May and then July, I was contacted by two others who were dealing with the same diagnosis of SPTCL.  Heather contacted me, then Daniel’s mother contacted me (Daniel is a teenager).  They had found my work on the web and asked if I could help them get the information they needed.

So I did.  And we learned that both Heather and Daniel had been misdiagnosed, just like I had.

Fast forward to today — the end of the year, and holiday time. I checked in with both Heather and Daniel to make sure they are still doing well.  And yes, they most certainly are!!

I still choke up.  It’s still a bit overwhelming.  That’s three human beings, all of whom shared a misdiagnosis, none of whom underwent chemo, all of whom are healthy today.

Which is precisely why I do this work.

Here’s to even more great discoveries and saved lives in 2009.

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