“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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In the five years I’ve been working on patient empowerment and patient advocacy, I’ve been thrilled to have been quoted in the likes of the Wall Street Journal, US News & World Report, Forbes, Fox, NPR, PBS and others…

But now I know I have arrived — because O Magazine came calling!  Sure enough — an article called Someone on Your Side – it’s about hiring a patient advocate to help you through a medical problem. Because I am the founder of AdvoConnection and work extensively with private patient advocates, I am one of the people quoted in the article.

I join three of my distinguished (and very talented!) colleagues.  Hari Khalsa is the Health Whisperer.  One of her patient-clients who was being treated for thyroid cancer just could not get her doctors to coordinate her care.  Hari stepped in to make sure the care was coordinated and Tracy, the patient, got what she needed.

Gail Gazelle is cited in the article, too.  Gail owns a private advocacy business called MDCanHelp.  Gail points out that too often doctors just don’t have the time to devote to care coordination as they should.  Private patient advocates step in to fill the gap.

And Ken Schueler, who has been coordinating care for cancer patients for many years, is quoted, too.  Ken provides some advice for finding good health information online about diseases, clinical trials and more.

The most important information for you?  When you read the article, you’ll realize how important it is you find an advocate to help you.  Although the Patient Advocate Foundation might work for you if you can’t afford an advocate (they handle insurance and  claims issues) — if you need care coordination and help with your medical decisions, then you must give serious consideration to hiring a private patient advocate.

So how do you find these people?  Simple:  a directory of advocates who have been reviewed for their expertise, and work closely with patients like you everyday:  www.AdvoConnection.com.

Private patient advocates provide you with improved health outcomes AND peace of mind.

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Hard at work we’ve been!  And AdvoConnection, a dream of mine for several years, is getting ready to launch.

Since beginning my advocacy work almost five years ago, and being highly visible on the web, I hear from desperate patients on an almost daily basis:

• They cannot get an accurate diagnosis, know they need treatment, and need someone to help them find the doctors, or get the tests, that can help them.
• They are seeing too many specialists who aren’t coordinating their care.  They need someone who will take a look at their reams of medical records to help them sort out their treatment.
• They are having trouble with their insurer, who isn’t paying as promised, or who is denying them care.
• They have received doctor or hospital bills that they can’t sort out or decipher.  Or they believe they have been billed for services they did not receive.  They’ve read that up to 80% of hospital bills are incorrect, and they want someone to help them negotiate with whomever has billed them.
• I hear frequently from adult children of elderly parents, perhaps living in a different location, who need assistance for their parents, either to help them find a nursing home, or for eldercare or home health care.
• The biggest heartbreakers are the parents who have run into brick walls trying to help their children.  Or the left-behind person who lost a loved one to a medical error.  They need to know who to turn to — an advocate?  a lawyer? to get the support they need.

Now you can see why I wanted to develop AdvoConnection.  It is a service for matching patients to the help they need in the form of patient advocates, patient navigators, billing assistance and other forms of medical system assistance that will help them navigate the waters of our dysfunctional health care system.

There are two aspects to this new site and service:

AdvoConnection for Patients – www. AdvoConnection.com – will launch October 1.  Patients will be able to search for an advocate or navigator by location and service provided — at no cost to them.  They will have the information they need to contact that advocate to inquire more about their services.  It’s a directory type service that will help patients and caregivers find the help they need.

Any patient or caregiver who thinks s/he might need patient advocacy assistance can be added to the email list to be alerted when the site goes live (or, if you read this after October 1, 2009, go directly to the site itself.)

AdvoConnection for Advocates – http://members.AdvoConnection.com – provides advocates and navigators will the interface to be a part of the directory for patients described above.  It also provides additional business services such as marketing assistance,  and a forum for connecting with other advocates.  By early 2010, it will also provide them with access to an ask-a-doctor service, and other services they may seek to help them grow their advocacy businesses.

Any patient advocate interested in participating with AdvoConnection may apply for membership through that site:  http://members.AdvoConnection.com

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Then I watched the Dateline / Matt Lauer interviews and exposé, A Dose of Controversy, about where that suggestion came from, profiling Andrew Wakefield, the doctor/scientist who first suggested that link existed, and who is now hailed a hero by many of those parents who still believe in the connection.  Also interviewed were two more major players in the argument – Brian Deer, a British journalist who has exposed Wakefield over and over again, and Dr. Paul Offit, infectious diseases expert from Children’s Hospital of Philadelphia, who has written a book called Autism’s False Prophets which lambasts Wakefield’s work.

Matt Lauer pulled no punches in his questioning of any of the three.  It’s very clear that the worshipping behavior of these parents who believe that somehow Andrew Wakefield represents the second coming is misplaced.  But even more than that – it’s very easy to see how we observers must use the follow the money rule on all three of these men.  Perhaps an even bigger lesson has to do with LISTENING.

But we also must remember in the midst of this — that many studies (I can’t find a number, but it was suggested there were at least dozens) — studying, literally, MILLIONS of children — have proven every time (not just some, but every time) that an autism-vaccine link DOES NOT EXIST.  Even The Lancet, a highly respected medical journal, the one which originally published Andrew Wakefield’s article about that link, has stated that they never would have published it if they had known how Wakefield’s work had been funded (see below.)

Follow the money (FTM) — it’s the rule that helps explain a lot of the “why’s” in healthcare.  Here are examples, as applied to the questions about autism:

FTM explains why Andrew Wakefield would continue asserting that the MMR vaccine causes autism — because he is/was paid in at least two ways to make sure that was clear.  First, he was paid at least $750,000 by a company that developed a measles-only vaccine that could have been used as a substitute for the MMR.  Now, under suspicion for other (unspecified) charges in his native England, he has set up an outpost in Austin, Texas (have to wonder about the wordsmithing there — Austin and Autism) — but is not licensed to practice medicine in the United States.  Parents are paying thousands of dollars to have their children tested for certain gastrointestinal problems possibly related to autism, but it was unclear as to whether any children have actually been helped by Wakefield.  Further, outside of parents talking about how wonderful he is, none seemed to be able to pinpoint exactly why — except that he listens.

(All other doctors of every stripe — please take heed of that — HE LISTENS.)

Brian Deer – his FTM is a bit easier to track.  He is paid to do his investigating and writing, so finding a goldmine like Andrew Wakefield is job security.  It should be noted that Deer also needs the money to defend himself legally. He has been sued a number of times by Wakefield — always unsuccessfully — Deer has always prevailed, able to prove that his allegations about Wakefield were accurate and defensible.

Dr. Paul Offit requires some FTM analysis as well.  Beyond the income from his book where he alleges that parents have been scammed by Wakefield for more than 10 years, he is full-on supportive of vaccines – including the fact that he is the developer-inventor of one vaccine.  So yes, he makes money as the developer of the vaccine, which seems to be unrelated to autism.  Interestingly, he has an expense many would not ever think of — he is forced to pay for bodyguards, because some of those Wakefield supporting parents have threatened his life.

Here are some beliefs I hold, which affect my beliefs about this controversy:

• I absolutely believe each of these parents who has observed their children well enough to say “She was fine, then she got the vaccine, and something happened.”  I don’t question that for a minute, because I do believe parents are THAT WELL tuned in to their children.
• I also know human nature well enough to understand why parents cling to any belief that would help them explain something that is otherwise not understandable.  As humans, we all want to assign blame. It’s the reason we can’t cope with problems like Hurricane Katrina, or any other mother nature related catastrophe — because there’s really no one to blame.  By clinging to the vaccine-as-perpetrator, parents have someone to blame, plus the bonus of a hero in Wakefield.  (Plus making Jenny McCarthy a hero — another story for another day.)
• When people are desperate, like these parents with autistic children, they will go to extremes, even when those extremes don’t make sense.  To so desperately believe in something that has been disproven in so many ways, and to be threatening the life of someone who truly makes sense — these are moves of desperation.

Combining those beliefs, and having done a brief FTM analysis – we have to look at some bigger picture questions, too.  I provide no answers here — I’m just sayin’…

• So what if Wakefield and all these parents are right?  What if the MMR vaccine DOES trigger something that causes autism?  Maybe it’s not the vaccine itself — maybe the child happened to have eaten something that day, or has another very mild, asymptomatic virus or bacteria in his body — or ?  It could be the vaccine in a combination with something else – I do know a genetic link is being studied, too.
• Even if there is a link — how does that change things for the parents whose children do have autism?  It doesn’t mean there is a cure.  You can’t subtract the vaccine from their bodies.  So why would parents put so much energy into their hero-making – at the expense of taking time away from their own children to do it?
• Autism is a “spectrum disorder” — is it possible it’s not just one thing?  Is it possible that even though the symptoms and some of the behaviors are similar, that these children really have different disorders — triggered by different things?  Whose to say that some forms of  ADHD, for example, aren’t really a part of that spectrum?  I know there are many discussions of misdiagnosis among both autism and ADHD diagnoses….

Finally — I believe the bottom line here is the fact that NONE OF THESE PROFESSIONALS get the fact that the passion and desperation fuel this fire and that the people who feel the most maligned (the parents who believe in Wakefield) do so because they feel that he LISTENS.

And that is the bottom line for today’s very long-winded post.  We all need to listen more because listening, then responding appropriately, will lend itself to compromise and understanding — no matter what the controversy.

I’m listening — what can you tell me that will help explain what I don’t understand?

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Lives First
(Then Money)

or

Money First
(Then Lives)

“Lives First” people understand that lives are more important than money.  Not that money isn’t also important.  It’s just that they believe that aspects such as no insurance denials for pre-existing conditions, or making sure rewards are in place for innovation, or assuring access for everyone (everyone must participate) or making sure there is focus on health outcomes improvement — are more important than how reform will initially be paid for.

“Money First” people understand that controlling costs and reining in spending are more important than worrying about who gets what kind of options for care or access.  They understand that yes, people die or get sicker (and more expensive) when they don’t have access, but that denying access to some means others can get better care. They tell the Lives First people that if money isn’t the first consideration, then it will mean rationing for all, as if that is something new. (A bogus argument, by the way, because rationing is already a part of our care.)

Some generalizations, although I realize there are exceptions:

The Lives First people are often people who have had their access challenged due to cost (or they have watched a friend or loved one who has desperately needed access and could not afford it.)  I’ve been there.  Although I had high deductible health insurance when I suffered my misdiagnosis, the co-pays were back breakers. I lost every penny I had in savings just trying to keep up — all for the privilege of proving the medical experts were wrong.

The Money First people are typically people who do have access, either because their employer subsidizes their health insurance or because they are already age 65 and older and have Medicare.  They see reform as something that will impinge on their income because it certainly won’t get in the way of THEIR access.  They don’t need to worry about other people’s lives.  They only need to worry about their money. (I have to wonder about the Medicare recipients who think money is more important – do they have this conversation with their children?)

Based on that description, which do you think I am?  There’s probably not much question in your mind — but this may surprise you: My husband and I have good healthcare coverage because he is retired from the Air Force and that gives us access to a government payment system for the rest of both our lives.  Healthcare reform will end up costing us more money than we pay now, there’s no doubt.  Based on my own generalizations, you might expect me to be a Money First person….

But of course, I am not.  I hear from too many of those people who don’t have access, who have bankrupted because of medical needs, who work up to four or five jobs just so they can buy into a high deductible, catastrophic plan, just like I had. They get sicker, or they lose a loved one, not because the care wasn’t available, but because they could not afford it, or because they were denied care since they had no insurance.

Don’t get me wrong.  I understand that money is an extremely important consideration in the debate. We need to be responsible about the money questions, and yes, I get the “don’t want to mortgage our children’s future” argument. I believe we need both points of view to hammer out the best approach.

But, if you are a Money First person, I ask you to consider that Lives First may be the more fiscally responsible approach.  If we build a new healthcare system that assures access, even if it’s quite expensive to begin with, then over the longer term, we will be “building” a healthier populous — one that won’t need as much of the same kind of expensive access we have today.  In the long run, the system will cost far less with healthier people who won’t have to go bankrupt just to get the care they need.

Ask yourself: What’s more important to you? And which profile is yours? I wonder if maybe you’ve even put yourself into the wrong category to begin with? Does this food for thought shift your thinking at all?

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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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This story was sent to me by my friend Debi.  It’s not a story about the healthcare system, but it most certainly teaches us a lesson that we can apply:

Barbara Walters, of Television’s 20/20, did a story on gender roles in Kabul , Afghanistan several years before the Afghan conflict. She noted that women customarily walked five paces behind their husbands.

She recently returned to Kabul and observed that women still walk behind their husbands.

From Ms. Walters’ vantage point, despite the overthrow of the oppressive Taliban regime, the women walked even further back behind their husbands, and seemed to appear happy to maintain the old custom.

Ms. Walters approached one of the Afghani women and asked, ‘Why do you continue with an old custom that you once tried so desperately to change?’

The woman looked Ms. Walters straight in the eyes, and without hesitation said… ‘Land Mines.’
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According to Debi (and the millions who forwarded this before her): The moral of the story is (no matter what language you speak and where you go) is: BEHIND EVERY MAN, THERE’S A SMART WOMAN.

But I actually see it a bit differently  (you knew I would!)…

I think instead it teaches us that we can’t simply place judgment, or accept what we are told, or what we see, without looking behind it. Without asking why?  or what else don’t we know? or for some sort of explanation.

When something doesn’t seem to make sense, then there is something we don’t know.  If you are diagnosed, you need to ask, “How did you arrive at that conclusion?  What else can it be?”

When your doctor tells you what treatment you need, you need to ask, “What other possible treatments are there?  What do I need to know about how this treatment will affect me?”

To get the healthcare you deserve… NEVER stop asking questions.

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I’ve always admired Oprah.  To me she has been the perfect example of the American dream, while retaining her moral compass and behaving ethically.  Until recently, she managed to make her billions by keeping the best interests of her audiences at heart. She had my admiration and my respect.

But no more.

Keep in mind, that when I mention ethics and morals, I’m not suggesting she avoided controversy or wasn’t willing to stick her neck out politically.  Of course, Oprah has been at times controversial and political.

As she has every right to be!  It’s her show / magazine / network / production company / conglomerate! She hasn’t earned her following by being neutral or wishy-washy.  Even when I have disagreed with her opinions on some topics, I still believe she has had every right to voice them.

But until recently, when she has taken a stand, she has done so to improve her audience’s knowledge of a topic, or to help them understand why she believes the way she does.  Oprah has helped us understand point-of-view, whether or not it’s our own point-of-view.

And until recently, I have admired her ability to bring so many and varied points-of-view to her audiences, without her #1 focus being how she could make money from it.  Granted, she invites guests who will maximize the size of the audience, meaning, indirectly, increased income from sponsors, magazine and TV show advertisers, etc.

That’s fair.

What’s wrong is what she has done recently and that is, she has signed a contract with Jenny McCarthy. McCarthy is no longer a once-in-awhile guest.  Now she’s one of Oprah’s annointed ones.  It marks a shift for Oprah, a shift in the wrong direction.

And now, I am no longer a fan.  For the first time, I believe Oprah has traded her media soul to the money-making devil.  And that has tainted everything she will do from now on.

In case you don’t know who Jenny McCarthy is, she is a former playboy bunny – come – self-proclaimed expert in autism.  McCarthy has a son who she claims to have cured of his autism.  She has written books, marched on Washington, and been very vocal, presumably on behalf of families of children with autism.

For the record, I do not claim to know much about autism at all, and for all I know, maybe she HAS cured her son.

What I object to is not McCarthy’s work in autism — rather — her stance that since she believes her son’s autism was caused by vaccines, she now adamantly advises new parents to refuse to have their children vaccinated for childhood diseases.  Her son was born in 2002.

Here’s the problem with that:

First — there is no proof that vaccines cause autism. In fact, all the proof is to the contrary. The agent contained in vaccines that some argued may have caused autism was called thimerisol. Thimerisol has not been used in any vaccines since 1999.  Yet, the number of children diagnosed with autism is on the rise.  Clearly, something else is causing it.

The second problem — that vaccines have been developed strictly to destroy the diseases that destroy lives, but they can’t do their job if they aren’t being used.  Think of the millions who were injured or killed by polio before the polio vaccine.  Today, the only people getting polio are those who have not been vaccinated.  If children are not vaccinated they will risk polio and it’s their parents who, by choosing not to have their children vaccinated, will put their children at risk.  That’s true, too, for every other childhood disease.

Read Time Magazine’s interview with McCarthy. And McCarthy’s very classy quote,

“I do believe sadly it’s going to take some diseases coming back to realize that we need to change and develop vaccines that are safe. If the vaccine companies are not listening to us, it’s their f___ing fault that the diseases are coming back. They’re making a product that’s s___.”

(Those are Time Magazine’s bleeps, not mine.)

As one friend put it:  Jenny McCarthy is systematically destroying children’s and families’ lives by taking such a dangerous stand.  How is that any different from Adolph Hitler?

Jenny McCarthy is not an MD. She has no medical credentials whatsoever.  Yet young parents are listening to her because they are desperate to find someone who can help them with their autistic children.  If they listen to what she has to say about helping their child recover from autism — great.  But to listen to McCarthy’s medical advice about vaccines?  That’s foolish.

Now — returning to Oprah. Oprah has had Jenny McCarthy on her show any number of times.  That’s a good way to showcase McCarthy’s point of view, especially when it’s contrasted with those who are experts, those who really do know something about autism and vaccines.

But to sign McCarthy on, as she has with Dr. Phil McGraw and Dr. Mehmet Oz?  They ARE doctors!  What message is that sending to those who can’t discriminate who does and who does not have good information? (And I wonder how Dr. Phil and Mehmet Oz feel about being in the same media camp as McCarthy?)

And won’t it be interesting when McCarthy spouts her medical opinions (opinions, NOT facts) on her show, a parent does not get her child vaccinated, that child and others are debilitated or die from McCarthy’s advice?  I wonder if Oprah will be sued along with McCarthy?  Afterall, it’s Oprah who has given her the platform.

Oprah — sorry — but you’ve stepped over a line of trust and respect.  You made that flip to the darkside, all in the interest of growing your franchise and making money.

You’ve lost this fan, and I suspect, many others.

Update 5/31/09: Apparently Newsweek agrees with me. Oprah has truly stepped over the line.

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Because it works great for me.  And has helped me learn as much about patient empowerment issues in the past few months than ever I could have learned in any other way.

Wonder why you can’t gather more followers?  Wonder why people unfollow you?  Wonder why no one reacts to what you’ve posted?

The answer is actually quite simple, and if you give it a try, you’ll decide Twitter works for you, too.

Here’s the problem:  Many people think Twitter is like a bulletin board.  They think they are supposed to post information and everyone else will flock to see what they have to say.

But that’s not it. Even though the question at the top of Twitter is, “What are you doing?”  you are better off ignoring that and going with this approach instead:

Think of Twitter as an ongoing conversation that you are welcome to drop into or out of at any time.  Instead of using it as a billboard, use Twitter to engage with others — THAT’s the real value.

The skills that make Twitter work aren’t about posting. They are about listening, posing questions, asking advice, congratulating, being sympathetic, cracking jokes, being clever …. In effect, the same skills that make you a good friend, are the same skills that make Twitter an incredible resource for you. Sure, you can talk about yourself on occasion.  And you should! But mostly you want to be tapping into others’ knowledge, learning and sharing.

Think of it this way:  suppose you went to a party or a networking event, and the only thing people ever did was brag.  They never asked you about who you are or what you do, or why you are there.  They never offered you anything to eat or drink.  All they did was talk about themselves. Boring! Self-centered! Pompous! How much time would you want to spend with them?

Not much, of course.  So if all you are ever doing on Twitter is telling people what you are doing, if you aren’t engaging in a conversation with them, then you come across as that same boring and pompous person.

So go back to Twitter (or sign up to use it — here is some good advice for getting started with Twitter).  Begin responding to people.  Even if they aren’t following you, they’ll find your questions.  (You can find anything that’s been said to you, even if you don’t follow people, by searching for just your name — no @ sign or even # sign. Just type your twitter ID into the search box and you can see if someone has asked you a question or responded.)

Personally, it drives me crazy when people post but never engage.  I have stopped following many who only ever tell me what they are doing, but never seem to be interested in what others have to say.

The conversations can be interesting, or funny, or stimulating… friendly, or abrasive, or professional, or even life saving.  I’ve made new friends, I’ve gotten to know others from around the world, and I’ve gathered potentially life saving information for a woman who needed help for her son.  An incredible resource.

The bonus is, that the more people who you engage with, the more followers you will have.  So when you do have something worthwhile sharing, more people will see it.

So join the conversation!  If you follow me, then please say hi — I’ll find you and will respond, I promise, even if I don’t follow you back.

@TrishaTorrey

I look forward to meeting you on Twitter.

PS – once you begin truly engaging… and you really love it… and you can’t get enough of it… don’t fall victim to the opposite problem – Twittiarhhea!  Just like the people who talk TOO much at a party, you may be unfollowed because you post too often.  Balance is the key.

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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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It didn’t take long for the conspiracy theorists and the rumor mills to get going over swine flu, did it?

Let’s see:  do Madonna or Salma Hayak already have swine flu?

Or – is this possible pandemic really just bioterrorism?

These and more swine flu myths, separating fact from fiction and some fraud thrown in, too… check them out!

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