Tysabri, Tysabri, TYSABRI!!!...

If you type the word, "Tysabri" enough times in a blog title or body of a post, hundreds of wayward explorers will come bounding to your blog in search of the meaning behind WHY you typed the word "TYSABRI". And, unfortunately, there ARE those of us in the MS world of bloggers that seem to attract attention simply by opening our big, fat mouths. Sigh. BRAINCHEESE appears to have become one of those *big, fat mouths*. (I personally think it is a genetic defect/gift.) LOL

**SIDE BAR** Whenever I blog about Tysabri or my tales with this drug, CHEESE is bombarded with anywhere from 200 to 500 *hits* per day. Some of these *hits* are the usual drive by crowd...some are new MSers searching for Tysabri information...some are pharmaceutical companies...many are from an Elan Investment site checking on what is being said about the company's MAIN stock investment currently...and a rare few are from higher learning institutes/research companies doing, well, RESEARCH! **END SIDE BAR**

As most of you *regulars* know, I met with the CEO, the Financial-Somebody-Important (not going to say CFO because, frankly I'm not sure WHAT her title is!), the Head of Pharmacy Services (somehow I was lead to believe I had already MET this person in September at my FIRST big meeting...turns out there may be a few "posers" at Club Med), the Administrative Director of Club Med's Neurology Department, and briefly with the Clinical Nurse Manager of the latter department (she got out while the "gittin' was good", claiming another scheduled meeting trumped this one!).

Anywhozit, for the sake of potential lawsuit for libel (never mind things I say in person, aka, potential *slander*), I will simply provide a play by play perspective of MY observations during this meeting...and, since I'm aware the CEO of Club Med (and perhaps a gaggle of legal team representatives?!?) has been reading CHEESE, I would NOT want to say anything here that could lend itself to misinterpretation (another big *shout out* to Mr. CEO...although, after our meeting, you may have lost interest in what I say in this blog. Sigh.).

I, as always, arrived for our meeting 15 minutes early. I'm obsessive/compulsive that way. When something is important to me, I tend to want to have time BEFORE hand to collect my thoughts...but mainly, I just hate being late. It's bad form.

**SIDE BAR** When I was 16 and first driving, I used to drive 7 miles to my Grandmother's home and escort her to church. Gram ALWAYS liked to be early for the service because this was a time she sat "pre-sermon" and chatted with her friends...usually 1/2 hour before the service started. One Sunday, I happened out of bed a bit late, and arrived at Gram's house only 10 minutes before the service started. I searched her home, but she was MIA. I decided to go on to the church (only 2 blocks away as the crow flies) and hoped she might already be there...sort of. My Gram was a woman of few words, but when she spoke, it was important to listen. And I KNEW she would quite possibly have *words* for me due to my tardiness. I located Gram in the church surrounded by her friends and cautiously approached. She saw me out of the corner of her eye, but did not turn to look at me. Then, suddenly and without fanfare or warning, she spoke, looking straight ahead: "The good Lord only asks you to be on time once a week." My heart fell into my shoes because she was speaking to me without acknowledging my presence. Since that time, I am rarely if EVER late for any engagement of importance...especially things when I have someone else waiting for me to arrive. **END SIDE BAR**

The conference room I was escorted to by the Clinical Nurse Manager was quite warm...I'm a perimenopausal woman and confined, warm spaces do NOT bring out the best in me. I wondered if the heat in the room was some sort of psychological *tactic* to "break" me...I've since dropped that paranoid notion because this would have required some preplanning intelligence (do NOT read into that sentence, my preciouses...LMAO). In the room and already seated was Mr. Pharmacy (see above drawing rendition for seating charts). We briefly introduced ourselves...he seemed to be a *nice* man...and we began chatting. Mr. Pharmacy, at some point in our pre-meeting mode, asked me what I "do" for a living.

**SIDE BAR** CHEESE readers ALL know what I do for a living...it's not a "pretty" job. I do legal/clinical evaluations for psychiatric commitments. More often than not, if someone asks what I "do" for a living, I simply tell them I push a lot of papers for the County. They usually leave me alone with this response. But there IS that special occasion when I take great DELIGHT in informing others what I do for a living. It can be a PROFOUND and UNNERVING statement to say, "I am an officer of Blankety Blank Superior Court and I do legal/clinical evaluations for psychiatric commitments". It can DEFINITELY be a conversation *turner*. LOL **END SIDE BAR**

I advised Mr. Pharmacy of my occupation, adding, "So watch yourself." He seemed to find this slightly humorous, then began chatting about his adult child, their college education, and where they are currently working (no brainer to figure out his child works in the psychiatric field, eh?!?). I immediately liked him...and continued to enjoy his presence throughout the remainder of my time there...most likely because he NEVER spoke again once the meeting started.

Slowly, players three and four arrived just before 11:30AM...Clinic Administrative Director and Financial-Somebody-Important. There was much shifting in seats as I calmly pulled the only bottle of water within a city block radius out of my bag to quench my thirst (perhaps they thought I was PACKING heat instead of just being tortured by SITTING in it?!?)...I brought it with me...I didn't offer to share. I'm not sure if they were impressed with my pre-planning skills, but I imagined little voices in their heads saying, "Dayum it! I wish I'd thought of that"...the room grew warmer by the minute.

I was told we were waiting for Mr. CEO...he was allegedly on his way. Someone called his personal secretary to check his status. Yes, he would be here in just a moment. Time ticked by...about 15 minutes to be exact. I sat quietly, only *chit chatting* when appropriate about random things like the FRICKIN' heat in the room. I wondered if Mr. CEO's tardiness would have occurred had he spend his formative years with Gram? I had lots of questions rolling around in my pea brain...sweat began to bead on my upper lip. Not anxiety sweat, HEAT sweat. It seemed quite odd to put an MS heat intolerant patient in a simulated boiler room, but I didn't voice a complaint...I just sipped my water under the watchful and jealous eyes of players 1 - 4.

**SIDE BAR** In quite crude terminology, multi-players assembled on one side of the table or *team* facing off with a lone individual, is called a "corporate gang bang". **END SIDE BAR**

Finally, Mr. CEO made his entrance into the room and all eyes lit up...albeit glazed over eyes, most likely affected by the room temperature. Mr. CEO introduced himself to me and immediately offered an apology for "dropping the ball on this one"...in fact, he repeated this apology several times initially and throughout the course of our now 45 minute meeting. I don't recall him apologizing for being tardy, but he DID tell us a doctor had stopped him in the hallway to talk about something, which was apparently far more important than timeliness.

I thanked him for his apology, plain and simple..."thank you for the apology". I suddenly became an overheated, perimenopausal woman of few words. I, after all, had little to say that was not already voiced via email/letter. It was Club Med's turn to do the talking. I began hearing my own, tiny little voice in my head, sounding much like Ricky Ricardo (Lucille Ball's husband) saying, "Loooo see. You got some s'plainin' to do".

As expected (yes, I once worked in nursing management and have taken a few *management* courses of my own...there ARE expectations of behavior in this sort of meeting), Mr. CEO asked me to *recap* my concerns for the group...just to be sure everyone understood the issues.

**SIDE BAR** Recapping/encouraged problem identification is a technique used to allow the "complaint-or" their first hand at talking. A show of graciousness to offer the speaking floor immediately to the person with the complaint. However, *recapping* is ALSO a technique used to defuse tense situations as well as provide the "complaint-ee" (identified alleged wrongful party) opportunity to formulate a plan of response (defense) versus possibly being blind-sided by unknowns. *Recapping* also offers the listening party opportunity to interrupt, thus side tracking the speaker...but only the corrupt would use THIS as a game plan. Hehe... **END SIDE BAR**

So...I *recapped*. For the pure entertainment of it all. I flipped through my emails, EOB (explanation of benefits - insurance), Lisa's wonderful Excel worksheet demonstrating Club Med is THE highest billed infusion site in a survey of 26 nation-wide sites, touched upon the HIPAA violation(s) that have occurred at Club Med which I am "privvy" to, etc. There were interruptions from the crowd...questions posed...oddly, what appeared to be a few fingers pointed among the Club Med attendees at one department or another. There was much talk and shifting of responsibility regarding the *letter* Club Med had previously promised to send out to ALL of their current Tysabri patients, detailing clear and concise billing. Essentially, LITTLE was established or agreed upon, except we could ALL say, for the record, "we" had met. Case closed...or at least I'm sure that's what the "hope" is/was after our meeting.

I made a point of advising Club Med that I knew I had no influence to change their billing practices...but I felt it WAS their responsibility to provide *informed consent of billing* to their patients. And to offer their patients ALTERNATIVES (i.e., OTHER more cost affordable infusion sites in the area) as options in receiving their Tysabri. This seemed to cause a stir amongst the tribe. There was talk about what "informed consent" REALLY consisted of and WAS it Club Med's responsibility to advise patients of this information (The MS Society function was actually brought up in this portion of the conversation...not by ME, of course...but as a *resource* for MS patients to obtain this information. I believe I DID honestly laugh out loud at this notion.)? I assured them it WAS Club Med's responsibility, which I insisted upon, whether this information came directly from a Club Med physician, the clinic, or the hospital administration. This was NOT something I could or ever WOULD easily be dissuaded from.

The conversation quickly degenerated again to WHO among Club Med would accept this responsibility? An unknown Social Worker from the clinic was offered up in sacrifice for informing approximately 80 Tysabri patients of this information. This hardly seemed fair, given USW (unknown Social Worker) only WORKS in the clinic 20 hours a week...that's a lot of Tysabri patients to deal with. Cunning cleverness over took me...I offered to ASSIST with this process...free of charge...volunteer my time...support the cause...work toward solution.

True, this WAS part of my motive. But only a small part. I offered my personal time to assist, knowing this would be difficult for Club Med to decline, and would ALSO provide me opportunity to remain WATCHFUL the process really DOES/DID occur. (Yes, Mr. CEO, if you are reading this...classic Management Conflict Resolution 101 Course...become available to assist, thereby providing oversight into the process. "Be the change you wish to see in the world"...WAIT! That's a Mahatma Gandhi quote. I'm soooooo transparent. LOL) I also offered Financial-Somebody-Important the SAME deal of free time/assistance in Club Med's HIPAA *retraining* process of staff...as a patient advocate and example...as a community educator to *bring home* the importance of privacy when dealing with patient's personal health information...as someone who could quickly demonstrate to employees how simple it is for me (or anyone ELSE, for that matter) to locate a person's demographic and past historical information LEGALLY on the Internet, all with only a name and date of birth. Financial-Somebody-Important didn't "bite" as easily on my offer. I think she may have attended the same Management Conflict Resolution Course that I did. Hehe...

Fidgeting began at 25 past the hour of 12:00PM...there was talk of concern for ending the meeting so that I might get to my Tysabri infusion (initially scheduled at 1:00PM) on time. Fidgeting seemed to increase somewhat when I advised the "tribe" I had called my wonderful infusion nurses late the day before and they graciously advised me I could "arrive whenever"...I certainly didn't want MY appointment to be cause for an abrupt ending to such an important meeting. (**Biting cheek here to keep from laughing as I fear insincerity might pass through my typing and I will be *found out*.)

And, I believe it was at this juncture, my eyes began to well up with tears. This is the point in the meeting where I explained to the "tribe" it was not, nor has it ever been, my intent to CREATE a problem, but rather work to find a solution. I stated I was there, making my points, on behalf of ALL MS patients who cannot advocate for themselves. I commented that, in spite of having MS, the majority of my brain still worked and processed and I have little disability compared to many other MSers. I stood to gain NOTHING financially from my ongoing persuasions to discuss Club Med's practices and billing...I remain gainfully employed and BLESSED with 100% insurance coverage, no matter WHERE I receive my Tysabri. I was in this room, writing so many emails, making tons of phone calls, not for myself, but for others far less fortunate than I. But for the grace of God, go I.

And I could only HOPE one day, if or when the time comes that I can no longer advocate for myself, someone...ANYONE, just as I am doing now...would come along and advocate FOR me.

The room silenced. The welled up tears in my eyes were real. And THIS, my friends, may have been the ONLY point made that did not fall upon deaf ears...

And, by the way...the FAT LADY still hasn't sung (Mr. CEO and Club Med legal team...that's CODE for "it still ain't over".)...