ACCOUNTABILITY...Subtitled - "My Day Today"...

"Are you OK?" the nurse asked me in that nursing voice I have used myself a thousand times...the one that expresses the WORDS, but not really wanting to know the answer to the question. Especially when the "answer" might require action of some sort, versus a simple verbal response.

"Yes," I mutter, as my bottom lip quivered and tears fell with abandon on my shirt. I looked away and out the window (later typing the previous blog post here), hoping my body language alone would be the only permission the nurse needed to relieve herself of any further responsibility of inquiry or interaction. As is generally typical, my lack of verbal engagement sent the nurse scurrying out of the infusion room, I'm sure wiping off her forehead of imaginary sweat, and letting out a big sigh of relief. "Dodged that bullet of potential intense patient interaction," I'm certain was the continued conversation in her head.

I sat crying and, at times sobbing, to catch my breath as the recent events of my life pushed against my temples, demanding relief from the carefully compartmentalized BOX in my brain where I have been storing the details. I felt myself shutter with a chill as my tears released days (and possibly years) worth of pent up emotion I have been storing...waiting for the "appropriate" time to let it out...waiting for the "best" moment to scream, or cry, or laugh hysterically. Today just happened to be that day.

Today was the day where the ACCEPTANCE of the facts of my life with Multiple Sclerosis burst out of my securely guarded brain box and flooded my thinking. As I sat listening to the young girl in the chair next to me behind the HIPAA curtain (she couldn't have been more than 14 or so) talk about her infusion and listened to the steady whirl of the pump that was infusing MY Tysabri, it hit me: I will be chained to this pump or a shot or a pill and this crappy health care system for the absolute REST of my life. I will wear the scarlet letters of MS on my chest like a humiliated adulteress full of illness/sin until the day I die.

My day began very early this morning like ALL of my recent mornings of late...my eyes popped open after 3-4 hours of sleep full of grit and sand, but refused to close again, while the aching in my neck and body served as their reminder to STAY open and aware. And then, my brain began its whirring sound as what few neurons I have left began to crackle and snap and rub together, creating thoughts I was forced to attend to. The first thought that entered my mind: "Don't forget to stick 'em with the fact your insurance company paid $10,000.00 less for the same infusion in the same location 2 months prior to the one you are disputing."

That thought was all it took to push me into completing my bed ballet (stretches so I can WALK without falling over when I stand up!) and heading back to the desktop computer (attached to the printer) to search insurance EOB's (explanation of benefits), highlight them, and finalize my strategy for my face to face meeting with the head of registration/billing at Club Med. I was in pure hope I might finally have my say about the cost of my most recent Tysabri infusion. And thus, began my day.

So, to make a completely boring and lengthy post as short as possible (forget overcoming the BOREDOM!), here are the events of my day:

• I DID meet with the head of registration/billing at the Club Med location where I receive my infusions. She DID provide me with what she called an itemized bill, which was no more than what appeared on my EOB. When I called her on this fact and my request for a BREAK DOWN of CHARGES versus simple statement items like "hospital incidentals - $10,000gazilliondollars", she told me (I kid you not) "no one has that...it's a package deal negotiated with your insurance company". The sound of my jaw dropping in utter muscular contraction I'm sure was heard as far away as Portland! (Did you hear it, ZEE??) Now mind you, EACH of my conversations today with Club Med personnel could take up an entire blog post and I'm just too tired/have headache right now to detail them...so suffice it to say, I challenged her on her bogus statement and continued to demand to speak with the person in charge of NEGOTIATING the contract with my insurance company or the financial officer who INPUTS the contract information into their computer system which leads to the OUTRAGEOUS BILLING!!! And, after this person having to admit that, "yes", there must be someone within the Club Med organization who actually DOES this job, she provided me with the name and number of the FINANCIAL DIRECTOR for ALL of the Club Med locations and ADMITTED she did not know this answer. STEP ONE OF ACCOUNTABILITY I proceeded to drop the next bombshell...the discrepancy of charges between identical services being provided at Club Med only two months apart and the 1,000% increase in cost that occurred. She peered puzzling at the papers in front of her and finally admitted she could not answer THIS question either. STEP TWO OF ACCOUNTABILITY.



• I then decided to pay the neuro clinic an unscheduled visit and see if my new "friend" and Clinical Administrator might be available to meet with me...oddly, she was able to make time for me...on her lunch break no less. I reviewed with her IN PERSON the same information I have been spouting on the phone to no less than 7 Club Med personnel, dialed up my "specialty pharmacy" while Ms. CA dialed up Club Med's pharmacy and proceeded to learn Club Med Pharmacy had not even RECEIVED my latest Tysabri shipment (to be infused in less than an hour at this point!) because someone in the neuro clinic had misinformed my "specialty pharmacy" and told them not to SEND it! This is where verbal language became a secondary form of communication and BODY LANGUAGE ruled the roost. I was now faced with the possibility that, AFTER ALL THIS, I might not even GET my TYSABRI infusion today even if I WANTED it...can you imagine the smoke that began to curl from my ears, nose, and lips? After some scuffling of personnel, my JULY TYSABRI dose (which oddly was NOT infused in me in July...didn't I already have doubts about this?!?) appeared from a refrigerator in the clinic, calls were made to the Director of Pharmacy, and an "agreement" was struck to "just this one time" go ahead and ACCEPT this tiny bottle of liquid gold into the hospital pharmacy and infuse me with it. At this point, I made mention that, should Club Med now charge me AGAIN (via my insurance) for the cost of my Tysabri medication (which I am certain now happened in July), they would be "double dipping" my insurance company and THIS, my friends, is called INSURANCE FRAUD. Not to mention probable state pharmacy board regulation violations of accepting a medication into pharmacy WITHOUT being able to verify the distributor or who's hands it may have gone through before reaching Club Med Pharmacy. Suddenly, I began to make sense to the Club Med directors and administrators and I was being taken seriously. STEP THREE IN ACCOUNTABILITY.



• By the time I was finally leaving the neuro clinic, I was running late for my infusion and my car was most likely going to be ticketed where I had left it 2 hours before. I paced quickly the entire 50 YARDS (if that) from the clinic to the hospital infusion center, left a quick note on the desk (because I couldn't locate any nurses...most bizarre...I considered checking their drug stock while no one was obviously looking, but decided against it...LOL) asking them to call me on my cell phone if someone ever resurfaced to start my infusion, and raced the distance to the street to try to save myself the $40 parking ticket I was certain to have received. Before I got to my car, I started feeling dizzy, so decided I MUST sit down for just a moment and eat a bite of the sandwich I had purchased earlier in the morning. I was hungry and literally exhausted. And, as I reached into my bag to grab a bite of sandwich, I discovered my FAVORITE FLEECE JACKET I had tied to my bag (Hey, infusion centers are frickin' COLD like a morgue! I went prepared.) was missing...it had fallen off in my travels about Club Med and was most likely gone forever.



• I simply could not take anymore today. I left my car to the will of the parking enforcement trolls, sat on a bench in the sun, tried to nibble my sandwich, and began crying. I was worn down to a nub and hopeless ANY of my challenges with Club Med would result in ANY benefit to ANY MS patient ANYwhere...which was, after all, my ultimate intent: to push the system to become accountable for their actions toward Multiple Sclerosis patients. Quite possibly NO ONE would EVER demonstrate any integrity whatsoever in this system.

And THIS is where the previous blog post began and ended. What happened shortly AFTER I posted from the infusion center on my trusty laptop revived me.

Having had my cry and release (which is kind of like "catch and release" really), I just sat staring at the wall and out the window of my Club Med infusion room. There was a knock at the door and in walked a woman who identified herself as the Administrative Director of the Neuroscience Institute...she wanted to "talk" with me. She apologized profusely for the manner in which I had been treated for the past 2 weeks, quoted statements I had made from my plethora of emails (indicating she HAD read them), spent time letting me rant about my concerns (all over again), and let me know she would be convening an advisory group, consisting of the Director of Pharmacy, the Financial Director of ALL the Club Med locations, and the Insurance Contract Negotiator for ALL of the Club Med locations and possibly Dr. She Who Will Not Be Named to scrutinize the billing practices/costs/and delivery system of TYSABRI for ALL patients receiving Tysabri at Club Med. She assured me if there were "errors" in current billing, i.e., "double dipping" going on, this would be corrected and reimbursed as well as looking at what are reasonable and customary charges for Tysabri distribution around the region and adjusting Club Med's billing practice accordingly IF feasible.

OK...so she probably just blew smoke up my a$$. I KNOW that. But at least the "smoke" was finally coming from someone with a title among the mucky mucks at Club Med to hold ACCOUNTABLE for this smoke! I had managed to gnaw my way up the food chain far enough that there was less wiggle room for the "buck" to be passed. The best part of my interaction with the Institute Administrator was, she "magically" found my jacket (which made me paranoid someone had actually taken it OFF me to try to give me that "last straw" effect and hope my camel back broke! LOL). And, when I finally made it out to my car almost 5 hours after parking in a two hour zone, THERE WASN'T A PARKING TICKET. So yes, I broke the law by leaving my car there, but I was prepared to be ACCOUNTABLE for the ticket...

I'm not holding my breath that there will be any decrease in cost of Tysabri infusions at Club Med and I'm pensive I may have STILL have to locate another infusion center more reasonably priced to continue this medication...which "could" mean I will have to say "bu-bye" to Dr. SWWNBN and be assumed under another neurology practice in the area. I made the PAINFUL decision to go ahead with the infusion TODAY in hopes of buying me some time to get this all sorted out...I'm also a bit "nervous" about suddenly stopping Tysabri after only 5 infusions in light of the recent study suggesting possible severe rebound/relapse in doing so.

But as far as Club Med is concerned, I'm pretty sure I've created enough of a disturbance to warrant attention to the matter at hand. And for this, I am pleased. I'm sure this will continue to be a "baby step" process of ACCOUNTABILITY with Club Med, but I'll continue to try to teach them to WALK with some integrity.

**ACCOUNTABILITY: ACTIONS TOWARDS OR INVOLVING OTHERS THAT REFLECT THE INTEGRITY OF THE PERSON YOU WANT TO BE.**