The "Squeaky Wheel Theory"...

They say it is the squeaky wheel that gets the grease...right now I'm worried it may be the "squeaky wheel" that gets infused with ANTIFREEZE!

Oh my...where do I even begin with my day today and the ongoing saga of battle regarding my Tysabri infusion at Club Med? For those of you just joining this previously recorded program, please see the last gazillion posts to catch yourselves up on the topic.

There are simply no words to express my utter dismay and disgust regarding my continued inquiry attempts to "get to the bottom" of what I believe to be an outlandish cost of my latest Tysabri infusion at Club Med (yes, this hospital will continue to remain nameless and faceless for all past and future legal purposes...LOL). After nearly two weeks of DAILY emails and/or phone calls to various sources within Club Med's care delivery system, I am exhausted. Yes, TIRED...but not down. I believe someone will simply have to put a nail in the tire on this "squeaky wheel" to shut me up (hence, my concern I "could" be infused with antifreeze tomorrow!). And I am exhausted, not from the tiring follow up of communications (or communication "attempts"), but from the seething ANGER I feel growing in my belly regarding this matter...the bile rises in my throat every time I THINK about this obnoxious situation.

Today, I placed a SECOND call to the 4th person I was directed to earlier in the week (there have been many attempts to "pass the buck" on this one...believe me...like about 7 people total to date!) and left a very curt, but firm message that I expected a call back from this identified person and found her lack of response to be both negligent and rude...I received a call within 15 minutes (of course, I "may" have threatened to bring a news crew with me or something...I really can't recall). THIS identified person was the first I have spoken to who made a plan with me to ANSWER my questions that I had been posing for two weeks:

• 1. I want someone to sit down with me from Club Med with a line itemization bill of charges from my 7/29/08 infusion and explain such things as "therapeutic radiology" and TEN THOUSAND DOLLARS of "hospital incidental" charges.


• 2. I want an explanation of WHY the charges for my Tysabri infusion nearly QUADRUPLED by simply walking from one area of Club Med's complex to another.


• 3. I want an estimated cost in advance of my infusion on 8/29 for what Club Med will be billing my insurance company IF I consent to receive this infusion again at 1:00PM.


• 4. I want to know the exact vial/lot number from Club Med's pharmacy that they are using to mix my Tysabri (that is pre-sent from my "specialty pharmacy") for my infusion AND if it does not match what my "specialty pharmacy" is sending, I want an immediate explanation.

I mean really? Is that TOO much to ask??? Apparently, it was. Who knew? THEY DID.

So, I was skillfully "ignored" until I began to make squeaky wheel "threats" of exposing the lack of communication to me as well as bringing in regulatory agencies, such as my private insurance company, state pharmacy board, etc. Suddenly, my phone was ringing and, like roaches exposed to a bright light in a previously dark kitchen, there was a STIR of activity from Club Med today...of course, it probably also created a sense of "encouragement" when I suggested I might "camp out" in the Administrator's office and await arrest by the local police department for trespass! I say "suggested" because the word "threat" sounds so hostile and I am in NO WAY a violent person (and, just in case my blog is being monitored now for legal or psychiatric purposes by Club Med, I must declare my physically harmless nature!).

I found myself at points throughout my morning BEFORE going to work for 9 1/2 hours today, exhausted from the emotion of it all. It seems so bizarre that a health care organization would treat one of it's customers in such a manner as to potentially CREATE illness...but here I sit as living and breathing proof of it all.

I DID have yet another conversation with my "specialty pharmacy" representative who was very upbeat and encouraging. She provided me with information about the charges THEY make to my insurance company (prepaying the cost of my Tysabri) and suggested questions I might want to ask Club Med's pharmacy for clarification, going so far as to say, "If they are re billing you for the cost of your medication, which your insurance company already paid for, then that is fraud, ma'am". She gave me the direct lot number on the vial of Tysabri that was sent to Club Med yesterday and suggested I might also want to call the Tysabri TOUCH program as well to discuss my dispute with the billing...I'm waiting to see what comes out tomorrow before I alert the TOUCH Police as it is NOT my intent to make it difficult for OTHER MS patients to receive their Tysabri at Club Med if they choose to.

So, tomorrow before my scheduled infusion time, I will be meeting with the head of some department or another to review my LINE ITEMIZED BILLING STATEMENT and ask questions about the charges. I am also "supposed" to receive a direct estimate of the cost of the Tysabri infusion that is "supposed" to occur in the afternoon. I have also made a decision that I will NOT continue to allow my insurance company to be billed at the cost of my previous infusion...I will simply take my cart and squeaky wheel elsewhere to a more "reasonable and customary" infusion site. Depending on my "mood" tomorrow, I may go ahead and accept my infusion to buy another month of time to make a site switch.

Ultimately, what is most disheartening about this entire ordeal is this:

• Club Med will NOT be changing their billing practices over my dispute.


• The cost to patients will REMAIN inflated at this infusion site.


• MS medications will CONTINUE to be priced right out of the market, leaving them only available to those able to manipulate the health care system or privately pay.


• I will be saddled with finding perhaps another neurologist AND an infusion site that has a more reasonable billing practice.


• And my insurance company will CONTINUE to pay outrageous prices for medications to treat or slow my MS progression with no PROOF the medicines are even effective...chipping evenly away at my insurance lifetime limit of benefits until I join the ranks of the "uninsured" or "uninsurable".


• I will most likely OUTLIVE my maximum insurance lifetime benefits since MS most likely won't kill me, making it one of the most COSTLY treated diseases next to HIV/AIDS and rare hemolytic disorders.

Oh, and I'll STILL have Multiple Sclerosis, too...