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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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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As you may know, the number of uninsured Americans is typically quoted at 47 million. We learned that last year those numbers were reduced to 45.7 million– not because more Americans can now afford insurance; rather, because their income had declined to levels that made them eligible for state healthcare assistance programs.

But in thinking that through, I realized there is a ripple effect, too. With the tanking of the economy comes layoffs, and with layoffs come even more people whose income will decline and, of course, that means they may not be able to access healthcare. Not all will become eligible for care through the government. In many cases, they will simply be left off the healthcare roles — no more coverage for them will mean no healthcare at all. Not for them. Not for their children either.

Which then led to another thought. The Commonwealth Fund reported in January that 101,000 people died last year from problems that would have been prevented if the person who died had health insurance. Do the math. 101,000 deaths. 45.7 million uninsured. That’s 22 uninsured people who died for each million who didn’t have insurance.

Now let’s look at what’s beginning to take place as a result of those greedy Wall Street CEOs who have caused our economy to decline, and who will be responsible for millions more job losses. For each million people who lose their health insurance because they’ve lost their jobs, 22 will die.

In my not-so-humble opinion — that’s blood on the hands of those Wall Street criminals and robber barons who have reaped millions of dollars for themselves, while denying the rest of the world its stability. This isn’t about people jumping off buildings and bridges because they’ve lost their savings. This is about people — responsible and hardworking Americans — who will no longer be able to pay for the care they need, have earned, and deserve.

Maybe those very guilty CEOs can’t be arrested for bad business dealings. But certainly they should pay for the deaths they will cause?  And what about the families left with no one to support them because their loved one has died?

These dominoes are huge and destructive.

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Our world is now less because we don’t have Tim. And It occurs to me that there are some final lessons we can learn about healthcare from him. Just as he helped us understand politics, he can help us better understand healthcare and a healthy life — as follows:

It turns out that Tim was quite watchful over his heart disease. He had been diagnosed, and was under a doctor’s care. He took his meds, he watched his diet, he exercised, and he got his regular check ups. He was a vigilant patient. Our lesson: being a vigilant patient, doing our best to prevent problems, following all the rules for good health, doesn’t mean life won’t still be too short.

We’ve learned that no matter how many studies exist, no matter what tests can be run, no matter what drugs are available, no matter how well we manage our diets and exercise, there are aspects of a body’s function that just can’t be controlled. Our lesson: Medical science still has a very long way to go.

We’ve learned that good quality medical care doesn’t always translate to a longer healthier life. Yes, I think that over a population of people, better care equals a longer life — BUT — Tim had the best care available in this country, and he died way too young, in his prime. Perhaps without that good care, he would have died even younger? We’ll never know… Our lesson: having good medical care is a plus, but it’s only one tool in determining longevity.

We’ve learned that even the best medical care can’t make up for 1) bad genes or 2) bad choices or 3) extreme stress — any or all. What we don’t know is whether Tim was a smoker when he was younger, or whether he survived on hamburgers and greasy pizza before he turned 55. We don’t know if there was heart disease in his family. We can assume his life was quite stressful. Our lesson: we can’t expect medical miracles to overcome bad genes, heavy stress or bad choices.

Tim taught us that we just never know when our final moment will be — and we need to be prepared. His family was the most important part of his life. He left this world making sure they knew exactly how much he loved them — his dad, his wife and his son. Our lesson: At any moment in life, be sure those you love know just how much you love them. It’s important for your own health, and their health and well-being, too.

Tim had very strong spiritual beliefs, and surrounded himself with spiritual people. In the difficult times, believing in a higher being can be very comforting. His family will find some comfort in the coming years based on that faith, too. Our lesson: Life can be enhanced, health can be supported, and comfort can be found through spiritual beliefs.

Finally, we’ve learned from Tim that one’s legacy is about character and a zestful approach to life. We have to believe that in that instant the heart attack struck, when his life passed before him, he knew it was all good, and he would not have changed one moment of who he was, who he loved, what he had accomplished, and the experiences he had enjoyed. Our lesson: live life to its fullest, with spirit, grace, and zest.

My prayers are with his family — His dad Big Russ, his wife Maureen, his son Luke, and his co-workers at NBC. We were all lucky to have him while we did. And we can all thank him for these final lessons about living a quality — and healthy — life.

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Over the years, that spot grew, became inflamed, and filled with pus. While in Iraq, the military doctor told Carmelo not to worry about it, it was just a wart. In January of this year, Carmelo died from the melanoma.

Compounding the ignored diagnosis was the fact that the Marines discharged Carmelo to go home and die. Then, because he had been discharged, they refused to pay for his military funeral.

Further compounding this enormous insult to his family, and the tragedy of his loss, is the fact that, by law (called the Feres Doctrine), the military doctor who missed Carmelo’s diagnosis cannot be sued.

Carmelo Rodriguez is back in the news today. The congressional representative from the district in which he lived has introduced a new bill to change that inability to sue. Called the Carmelo Rodriguez Military Medical Malpractice and Injustice Act, it allows soldiers, or the families of lost soldiers, to sue the military doctor who harms the soldier or misdiagnoses him or her.

The question here is fairness. It seems quite unfair to me that an ordinary citizen would have the ability to right a wrong through the courts, but a soldier, the very person who fights to retain that right for the rest of us, doesn’t have that same ability.

I’ll be watching what Congress does with this. I expect you will be watching, too.

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Several people have asked me if pancreatic cancer is the same cancer that afflicts Randy Pausch. You may remember Dr. Pausch as the Carnegie Mellon professor who gave his lecture of a lifetime in Fall 2007.

Dr. Pausch has done a great job of battling his cancer. He was given only a few weeks to settle his affairs, yet he is still fighting strong, six months later.

A close friend, Paul, succumbed to pancreatic cancer last year. He lasted only three weeks past his diagnosis — breaking many hearts among those of us who knew him.

So for those of you who are so inclined, please say your prayers for both Dr. Pausch and Mr. Swayze and their families. Your prayers have a far better influence on pancreatic cancer than most therapies can have.

(Photo Credit: Alan Light through Flickr)

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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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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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The question asked by the author, David Armstrong, was whether patients have a right to know about any financial ties doctors have to the treatments they recommend. We discussed that topic last week while he was researching for his story. I told him absolutely I believe patients have a right to know, but it’s not so easy as just asking the question.

What I learned from his column is that there is a proposal in Congress called the Physician Payments Sunshine Act of 2007 that will require companies to publicly disclose any payments of $25 or more to doctors. I also didn’t know that the American Academy of Orthopaedic surgeons has mandated, beginning in January, disclosure of any arrangements made between a surgeon and a company which will relate to treatment. So, for example, if you need your knee replaced, and the surgeon stands to profit from the new knee parts — s/he will need to disclose that to you.

Love it! Both are grand steps forward toward transparency and disclosure…

My contribution to the article was a response to the question whether patients should ask their doctors about financial relationships that might affect their treatment …. my answer might surprise you…. (and you’ll have to read the article to find out why!)

Then, when you’re finished, you’ll be interested in this post, too.

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Yesterday Robin Roberts (ABC) shared her chemo hair loss story during Good Morning America. Once again, Robin rose to the occasion, showing incredible strength, and it seemed to me, almost afraid of her own emotions — as if she had put her emotions on a shelf, perhaps to be dealt with later.

That was in great contrast with Hoda Kotbe’s (NBC) sharing of several weeks ago. Hoda shared her experience, after it was all over, but was still incredibly emotional and, it seemed to me, very real.

Then later last night, a woman named Lynn posted a comment to one of my blog posts about Robin’s experience, saying she was diagnosed a week before Robin was, and has had difficulty watching Robin’s reports, because she just doesn’t feel so strong. Her challenge is not about putting on a very public positive appearance; rather, she is challenged by paying her bills. (Thanks for writing, Lynn.)

This morning, I went to the ABC website to see what kinds of comments had been added to the story Robin shared yesterday. There are well more than a thousand comments — I read only about a dozen. But they are overwhelmingly atta-girls, and written by other strong women like Robin. So where were the comments by someone like Lynn?

And then it struck me. There was no allowance for individual differences… the role model had become not just a role model; rather, now she has become the expectation.

I do think there is an incredible amount of power and confidence (and healing) to be gained by doing anything you can to control your situation when faced with adversity. Robin shared her mother’s wisdom which I loved, “Make your mess your message.”

It worked for me. Taking control of my own situation, tightening my grip — I steered my own course and as a result, avoided chemotherapy all together.

But some people choose not to do that, and I think it’s unfair of those who are more public in nature to create a new expectation level that is impossible, and not even necessary for someone’s health. Hoda’s example was probably the best. She showed us her true and difficult emotions. But her emotions did not make her weak; instead they made her very real.

So that’s my message for today. No matter who you are, no matter how public or private your health situation, no matter what disease or debilitation it is — don’t let these public figures set YOUR standard. Don’t wonder what is wrong with you if you can’t meet their levels.

Instead, find your own strength, and transition through your treatment in your own way. If dragging yourself to work is the best you can do — that’s still fantastic! If wrapping yourself in a blanket, lying on the couch, and sipping hot chocolate makes you feel better, then go for it! If putting on a smiley face and pretending you haven’t been affected actually makes you feel better — then more power to you.

But do NOT let anyone else’s managing of their disease and treatment become your own expectation for yourself. Lynn figured out what she can handle. I figured out what I could handle. Robin and Hoda figured theirs out, too. None of us let anyone else define our expectations of ourselves. We have all just met our own expectations.

It’s up to each of us — man or woman — to figure out what our own individual levels are, and then to rise to our individual levels of expectation for ourselves. That’s patientude, too.

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