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.

. . . . . . . . . . . . . . . . . . . .

DISCUSS | TIPS | NEWSLETTER | FACEBOOK | TWITTER

. . . . . . . . . . . . . . . . . . . .

According to the abstract,

We found many of these consumers’ beliefs, values, and knowledge to be at odds with what policy makers prescribe as evidence-based health care. Few consumers understood terms such as “medical evidence” or “quality guidelines.” Most believed that more care meant higher-quality, better care. The gaps in knowledge and misconceptions point to serious challenges in engaging consumers in evidence-based decision making.

It goes on to explain how they did the study, how they drew their conclusions — and the bottom line is that we patients are making poor and expensive choices, we patients need to begin engaging more in our own care decisions, and therefore, and until we do, we will continue to be at fault for the huge cost of healthcare.

As their next step, Health Affairs developed a communication toolkit. But – just as every other group that tries to analyze patient behavior has done — it was developed FOR patients, to be given TO patients (through their employers) — but nobody worked WITH patients to develop it.

However — the study, the toolkit and the journal report have completely missed the boat on why patients don’t believe evidence. In fact, it has very little to do with evidence at all.

Here’s why:

Because the American healthcare system is based on profits — and the less engaged we patients are in our own decision-making, the more money there is to be made. As long as someone can make money from our need for care, we patients will continue to be manipulated so they can make their money. It’s not about evidence.  It IS about maintaining and increasing profit.

Some examples:

1.  Providers are not paid to talk to us.  In fact, they can’t wait to get us out the door.  Their goal is to make as much money they can from us — which is fair — but the system says that they have to do that by seeing as many patients as they can in their day.  More patients means less time per patient.  That approach, of course, is driven by payers. But how are patients supposed to discuss options with someone who won’t spend time with them?

My perspective as a patient:  I have symptoms. I am scared about what they mean.  The doctor won’t take the time to explain them or answer my questions.  He intimidates me, but he’s still the gatekeeper to all my medical needs, so I don’t dare make him mad.   I would love nothing more than to discuss options — but exactly who can I have that discussion with?

2.  Providers CAN make money by running tests and doing procedures – so they recommend all the tests and procedures they can get away with.  Further, they know that the paper trail of tests and procedures may cover their backsides one day if I ever sue.  That approach, of course, is driven by payers.

My perspective as a patient:  I have symptoms. I am scared about what they mean.  The doctor won’t take the time to explain them or answer my questions.  He intimidates me, but he’s still the gatekeeper to all my medical needs, so I don’t dare make him mad.  When he tells me I have to have a test or a procedure or take a certain drug, I just nod my head because I’m put on the spot. I don’t know the questions to ask, and even if I did, the doctor has left the room before I can even think to ask them.

3.  Providers are rewarded by writing prescriptions for expensive drugs.  (And don’t tell me that’s no longer legal because we all know it’s still going on — it’s just more covert.)  They are paid to speak at dinners, or they get their CME cruises paid for, etc….  Payers may encourage a prescription for a generic, but even that is no longer as true as it once was.  They’ve pretty much thrown in the towel – now they just charge patients a larger co-pay.

My perspective as a patient:  I have been diagnosed by the EXPERT — the doctor.  He suggests I take a certain drug. When the prescription is written for me, as I sit naked in his office, I have no way of knowing what it’s going to cost me when I pick it up… What I do understand is that a few months ago when I asked about a generic I was told that one didn’t exist for what I need.  Even if I ask, I’m afraid the doctor won’t be happy with me, and since it took me two months to get this appointment anyway, I just don’t want to rock the boat.

4.  Providers own equipment and facilities.  They encourage patients to use that equipment and those facilities.  MRIs, surgery centers – you name it, physicians own it — OR — they are employed by the people who own the equipment.  Those leases need to be paid!

My perspective as a patient:  I just know I banged up my knee and the doctor needs to look at it.  He tells me he’s sending me down the hall for an MRI.  What am I supposed to do — suggest I get an x-ray be done somewhere else instead?  Seriously.  Suppose he says no and gets mad?  My knee hurts today — I can’t wait another couple of months for an appointment with a different doctor!

etc etc etc

Perhaps by understanding our patient perspective on our interface with the system, you’ll better understand the bottom line to why we don’t make the choices that evidence or money suggests we should.

We don’t TRUST the system.  And we are AFRAID NOT TO TRUST our doctors.  Doctors are the gatekeepers.  They are the front line.  They are the ones who help us live and who may cause us to die – and we are intimidated.

Until the system shifts to a place where we can be partners, and feel as if our input will be listened to, considered, and respected, then there will be no massive shift in how patients influence their own care decisions, whether for evidence or money reasons, no matter how many communications toolkits are developed.

My regular readers know that I have never been about a victim mentality.  I have spent the last 5+ years writing and speaking to patients about getting past these hurdles. If there is anyone engaged in improving how patients approach their care, I’m at the front of the line.

But I’m also not willing to accept the blame being heaped on us patients as if we are children who haven’t yet done what we’ve been told.  You can’t flip a switch, tell us we are wrong, and that we are expected to change, when there is nothing about the healthcare system that will allow for that change.

Bottom line — as long as everyone in the healthcare industry is out to make a buck off our patient backs, there will be no improvement on a grand scale.  Period.

That’s evidence we all understand.

PS – think this is blown out of proportion? See what real patients have to say.

. . . . . . . . . . . . . . . . . . . .

DISCUSS | TIPS | NEWSLETTER | FACEBOOK | TWITTER

. . . . . . . . . . . . . . . . . . . .

However, if you think this post is going to be a call to action for Congress – think again.  While I am a firm believer in healthcare reform, and while I firmly believe we Americans deserve universal care – I also know that if you are already sick, or if you get sick today or tomorrow, or even next year, then healthcare reform isn’t going to help you anyway.

The one BIG benefit to all this healthcare legislative brouhaha, no matter what the outcome so far, is that it has forced us patients to realize that Marcus Welby has left the building.  The paternalistic, omnipotent doctor-as-God who actually cared about our medical outcomes has become an endangered species — one most of us will never meet in our lifetimes. Healthcare reform discussions have made this very clear:  American healthcare is not about health or care.  It’s about sickness and money.

So what have we learned?

That in order to get the good, decent care we patients deserve, we’re going to have to take matters into our own hands. Yes — US.  WE PATIENTS are going to have to do it for ourselves. We need to be EMPATIENTS (empowered patients.)  It’s a shift in mindset that those among us who are smarter and more attentive are realizing isn’t a choice.  If we want decent medical care in the United States (or, it seems, in most countries of the world) — we must make this shift in our thinking.

I hear people poo-pooing the use of the term “empowered.”  They don’t like it because to them, it suggests that someone must GIVE us power.

I don’t see it that way.  I see “empowered” as something we take on ourselves.  We take command of our care.  We take responsibility for acquiring the information we need, then making decisions for ourselves. We do that with a variety of resources, including physicians, other patients, and media information sources like the Internet, libaries and others.

If you think about it — that’s an entirely different way of accessing healthcare than most of us are used to.  It says that, in effect, we will no longer allow healthcare to be done TO us or FOR us.  Instead we will demand it be done WITH us.

That means it’s a whole new type of healthcare reform.
In fact, it’s PATIENT REFORM.

Are you ready to take up that cause for yourself and your loved ones?  There’s no argument over money here… it’s simply a recognition that if we are going to get the health and medical care we want and deserve, we are going to have to make it happen ourselves. It’s an approach to getting the right diagnosis, the right treatment, staying safe, and making sure you don’t lose your health because you can’t afford to access care.  It’s collaborative, research based, and helps us advocate for ourselves.

Here are some places to begin:

•  What’s an Empowered Patient? (or anything at the About.com Patient Empowerment site.)

•  You Bet Your Life! The 10 Mistakes Every Patient Makes (How to Fix Them to Get the Health Care You Deserve)

•  E-Patients.net (e-patients and emPatients describe the same thing – e-patients does not mean you need to understand electronic media.)

•  The Society for Participatory Medicine

These resources link to the dozens of other resources you’ll need, too.

Yes — this is it.  The beginnings of PATIENT REFORM.  Let those in Congress, the ones who have cadillac healthcare plans and don’t really understand what the rest of us deal with continue their bickering and corporate *ss-covering.  Let them continue to kow-tow to special interests who are more about making sure they keep their corners of the healthcare money pie, with little or no regard for patient outcomes.

I declare 2010 to be the Year of the EmPatient! Empowered, participatory — finding far better outcomes than we ever could by depending on Congress or someone else to — maybe — help us out.

. . . . . . . . . . . . . . . . . . . .

DISCUSS | TIPS | NEWSLETTER | FACEBOOK | TWITTER

. . . . . . . . . . . . . . . . . . . .

Readers of the post took offense, calling me arrogant and ignorant. Among them are people who are truly afraid, people who are allergic, people who feel as if they have done their due diligence and have dismissed vaccines (empowered patients!) — and conspiracy theorists.

I wrote a follow up post, citing highly credible sources for all to see, showing why I believe flu vaccines are so important. The bottom line is that the flu is dangerous — both the H1N1 swine flu and the seasonal flu are killers. Vaccines are the only defense we have today (who knows – maybe we’ll have something better in the future?) And the statistics tell us that we have a 591% better chance of dying from the flu than we do dying from the flu vaccine. You don’t have to be a Las Vegas gambler to understand those odds.

I am actually VERY pleased that so many people have given researched thought and consideration to the question – even the ones who disagree with me.  However — I must say — I’ve had it up to my eyeballs with the flu vaccine conspiracy theorists…. seriously. And if you are one, I say to you — get a life!

Here are the conspiracy theorists’ arguments. They remind me of a saying I heard many years ago — “Just because I’m paranoid doesn’t mean they aren’t out to get me.”  Further – they have violated the first rule of questionable healthcare practices, and that is – Follow the Money.

Here are some of their lines of reasoning, and my comments:

1. Flu vaccine is only produced to make pharmaceutical companies richer. To that I say — don’t be silly. For the cost, personnel and too tiny profits to be made by producing vaccine, pharmaceutical manufacturers would much prefer to put their efforts into producing something that actually makes a worthwhile profit for them.  Included is the manufacturing are symptoms relievers — far FAR more profitable in the long run.  Why would they want to prevent an illness at very little profit at the expense of bigger profits from medicine that could relieve or fix us?

2.  Flu vaccines were developed from African Green Monkeys - and the real intent is to eradicate the population of the earth! This one gets the “give me a break” award on so many counts… First…  if the government wanted to eradicate the entire population of the earth, they could do it FAR more efficiently by using, oh, say  anthrax or dengue fever – or some other killer.  Why would they go to all the trouble to develop something that actually took science?  Why not a shortcut, and something cheap to do it?

3.  And then I have to ask – why would the government (which government anyway?) want to eradicate the world’s population? If the government eradicated the world’s population, then who would be left to govern?  and who would be left to pay taxes to that government?  and who would be in charge anyway?  (because the government is comprised of people who would get sick, too)…. etc etc….

Sorry — but these theories are just plain laughable.  You want a conspiracy?  I think there’s a conspiracy to make me waste my time looking these things up — because I do my due diligence, unlike some of my readers.

Here’s the deal — I understand that not everyone wants to be injected with flu vaccines, and even that some must avoid vaccines because their bodies cannot tolerate them.  However — for the great majority of us (GREAT majority) — flu shots will keep us healthier — and will keep our loved ones and those around us healthier — than not getting flu shots will.

Further — as reasonable people, we need to understand that unless we have a real concern about negative effects of vaccines, we must accept responsibility for passing possibly deadly flu on to others when we don’t get the flu vaccine.  H1N1 or seasonal — they are both killers.  I’m not willing to be responsible for making someone else sick, nor chancing that they could die.  I would not be able to sleep at night.

Do you?

. . . . . . . . . . . . . . . . . . . .

DISCUSS | TIPS | NEWSLETTER | FACEBOOK | TWITTER

. . . . . . . . . . . . . . . . . . . .

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.

. . . . . . . . . . . . . . . . . . . .

DISCUSS | EMPOWERMENT TIPS | NEWSLETTER | TWITTER

. . . . . . . . . . . . . . . . . . . .

That law is yet another example of how patients are excluded from being allowed to take responsibility for their own healthcare.  Further, it is one more area of healthcare that has, in some ways, become dangerous.  The law exists because someone’s protective wisdom says we patients are either 1. not smart enough to handle the results ourselves or 2. need to be protected from bad news until a doctor can explain the results to us.  Studies have shown that 7% of all test results that reflect bad news that require a treatment are never delivered to patients (pause… and think about that for a moment….)

It is vitally important we cut out the middleman here!

You now have the opportunity to affect a change — by simply letting the Health Data Rights group know you support them.  I received this email today.  I have replied with a resounding YES I SUPPORT YOUR EFFORTS and I hope you’ll do the same.

This email must be sent by Monday, October 19, 2009.

You can send your supporting email to:  action@healthdatarights.org Put “Consensus Letter” in the subject — and make your opinions known.

Change The Rules and Get Your Labs

We are writing to share a timely opportunity to put HealthDataRights into action! On Tuesday, October 20, the Health IT Policy Committee at ONC is holding a hearing regarding CLIA laws and access by consumers to their own test results. We have a unique chance to speak with one, resounding voice that the federal barriers to patient access to test results should be removed. Dr. Phil Marshall of WebMD will be testifying at the hearing, and he will be presenting the linked consensus letter http://www.healthdatarights.org/pdfs/CLIA-Letter.pdf that provides background on the issue, recommends two common sense ways the federal laws can be changed to allow greater access, and the benefits of making those changes. This letter has been vetted by some of the top health data experts and health data privacy lawyers. Here is a summary of the letter and what we’re asking you to do:

ISSUE: Federal regulations under the HIPAA Privacy Rule treat test results as a special case, separate from other protected health information. CMS has issued regulations that further state that results can only be delivered to “Authorized Persons”, which as it is currently defined does not include the patient who is the subject of the test.

PROPOSED CHANGE: We propose simply eliminating the special treatment of test result data, and have it be treated under HIPAA just like other protected health information. We also propose that Authorized Persons explicitly include the patient (upon request by the patient)

BENEFITS: While these changes do not address the state laws in a small number of states that further restrict access to test results, they remove substantial federal barriers to data access. It is unlikely to cause any harm because, under HIPAA, providers and labs generally would have up to 30 days to respond to the patient’s request, providing them great flexibility in how and when they deliver the test results. Also, because so many clinically significant test results (approximately 7%) are never reported to the patient, increased access can help ensure that test results aren’t  lost to the ether . Third, because approximately 14% of labs and other tests are repeated because prior results aren’t available, making test results more available to consumers can help reduce this duplication and related costs. Finally, the explosion in health management applications and services that could make use of test results have the potential to help consumers better manage their health, make more informed health decisions, and help lower costs.

CALL TO ACTION:

STEP 1: Send an email by close of business Monday, October 19, with the following information:

Your name and, if you choose, your organization & your stance on this letter:

-I support the letter and wish to be listed as a co-signer

-I support the letter but do not want to be listed

-I don’t support the letter, and why

STEP 2: Blog about this issue. Include stories, data and stats. Let’s generate some real energy around making this change!  You can also comment on the new healthdatarights blog.

Note the letter can be found here [http://www.healthdatarights.org/pdfs/CLIA-Letter.pdf]

Initial signers:

Dr. Phil Marshall, WebMD
Dr. Daniel Sands, Harvard Medical School
Jamie Heywood, PatientsLikeMe
Dr. David Kibbe, The Kibbe Group, LLC
Nate McLemore, Microsoft
Adam Bosworth, Keas
Dave deBronkart, E-patients
Dr. Roni Zeiger, Google
Colin Evans, Dossia

[email action@healthdatarights.org ] to join.

PS: Forward this to your friends and don’t forget to endorse healthdatarights at http://www.healthdatarights.org/

This email must be sent by Monday, October 19, 2009. You can send your supporting email to:  action@healthdatarights.org Put “Consensus Letter” in the subject — and make your opinions known. It will take you only one minute — vitally important — so please participate.

	Want more tools and commentary for wise patients? Sign up for Every Patient’s Advocate email tips
	- – - – - – - – - – -
	Follow me on Twitter
	- – - – - – - – - – -
	Join me in the Patient Empowerment Forum at About.com
	- – - – - – - – - – -
	Or link here to empower yourself at EveryPatientsAdvocate.com

………………………………………

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

	Want more tools and commentary for wise patients? Sign up for Every Patient’s Advocate email tips
	- – - – - – - – - – -
	Join Trisha in the Patient Empowerment Forum at About.com
	- – - – - – - – - – -
	Or link here to empower yourself at EveryPatientsAdvocate.com

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?

	Want more tools and commentary for wise patients? Sign up for Every Patient’s Advocate email tips
	- – - – - – - – - – -
	Join Trisha in the Patient Empowerment Forum at About.com
	- – - – - – - – - – -
	Or link here to empower yourself at EveryPatientsAdvocate.com

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?

……………………………..

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.

. . . . . . . . . . . . . . . . . . . .

DISCUSS | EMPOWERMENT TIPS | NEWSLETTER | TWITTER

. . . . . . . . . . . . . . . . . . . .

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.

	Want more tools and commentary for wise patients? Sign up for Every Patient’s Advocate email tips
	- – - – - – - – - – -
	Join Trisha in the Patient Empowerment Forum at About.com
	- – - – - – - – - – -
	Or link here to empower yourself at EveryPatientsAdvocate.com