Wednesday, December 03, 2008

Shots Have Been Fired...

So, the first shot fired over head of Club Med has hit a target...thanks ONCE AGAIN to Lisa over at Brass & Ivory for her assistance in putting together a blue print of action (if you haven't gone over and read her blog, it's about TIME you do!).

I sent the first copy of "the letter" via email Sunday late night, only to discover on Monday, NO ONE had received it due to Club Med's email filter system...sooooo, I proceeded to send it again NO LESS THAN FIVE TIMES between Monday and today...each time, getting *blocked* by Club Med's filter. I eventually just copied off the letter and put 5 copies in the US Postal mail, faxing a copy to Dr. She Who Will Not Be Named office, and alerting her personal minion assistant it was coming across the wire. I then headed off to work.

By the time I had arrived at work, my cell phone had a message, which was from one of the Club Med MS Clinic representatives. As I have said all along, I don't have ANY issues with my neurologist or the clinic...just the hospital system that is GOUGING Tysabri costs. The clinic representative wanted to know what she could do to assist and I politely told her NOT A DAYUM thing! I needed to hear from someone way higher up the Club Med food chain than her and, if I DIDN'T hear from one of the powerful untouchables, I would be proceeding with plan *B* as outlined in "the letter" (see previous post if you are just tuning in to my Tysabri billing saga). She tried to tell me the elusive letter from the Clinic was forthcoming and had "just been approved to be sent out" (detailing billing costs of Tysabri for ALL MS clinic patients on the drug)...I again calmly and graciously told her that was *nice*...but if I didn't have a copy of the letter in my hot, perimenopausal hands by Friday AND one of the powerful untouchables hadn't contacted me by then either, plan *B* would be initiated (aka, war would be declared). She told me she hoped it wouldn't come to that. I'm not exactly certain what PART of plan *B* has the sharpest teeth, but I imagine it is the "I'll contact the media" part. LOL

And now, for the cold hard truth...I DON'T LIKE CONFLICT. As a matter of fact, I tend to steer clear of it whenever possible in my personal life. Every day, I am faced with conflict in my job...either a patient is mad at me because I'm not doing what THEY want, or a professional is mad at me because I'm not doing what THEY want. If I commit someone, the committed becomes angry and if I don't commit someone, the referent is hacked off. I deal with CONFLICT for nearly 9 1/2 hours a day EVERY day I am at work. So, the idea of having to manage even MORE conflict at home is overwhelming.

But here's another cold hard truth...I am taking on this conflict with Club Med (and insurers), not particularly because of my OWN needs, but for the needs of countless other MS patients who either cannot find their own voice to do so or simply don't know how. I have excellent tax-payer funded insurance...I pay NOTHING for my Tysabri infusions, once my yearly deductible is met (which ends up being met usually no later than March of any year, estimated to cost me around $1400 out of pocket.). I could easily go merrily along for 10+ years and not exhaust my 2 million dollar lifetime maximum benefits. I don't NEED to fight with Club Med. I WANT to fight this fight because it is important...maybe not in the big picture of things to come...but in the every day battles MS patients struggle with. Battles such as whether to pay their rent or get the medications they need.

When I am able to keep the above perspective, I am ENERGIZED to take on this battle. And when I read your many comments of encouragement here on CHEESE, I am humbled by your show of support. WE, as MS patients, MUST fight these battles whenever we are able because no one is going to listen to us or fight for us unless WE do it. I am currently physically and emotionally capable of doing so, but many MSers are not...they are exhausted from their disease or beaten down by a health care or disability system that has turned its back on us. YOU keep me fighting/speaking out...and because of this, I thank you.

OK, I'm starting to sound like a poorly written and crudely articulated Obama speech, so I'll stop. LOL Of course, I will keep everyone informed here as the end of the week unfolds and I have either gotten a response from Club Med or been ignored.

And, in answer to your question, Spaz Attack, about the multi Investor Village hits today on CHEESE...these "hits" come from the Elan Investment Message Board, which are a group of stock/shareholders monitoring Tysabri in the market...they are harmless peeps, but seem to know/monitor whenever the word "Tysabri" is whispered on the Internet! If you recall, Elan is the maker of Tysabri (Biogen Idec corp here in the States)...fear not. They often follow my Tysabri tales.

Must drop off to sleep now...I am preparing for what "could" be a somewhat eventful end to my week and I most definitely need to be well-rested. I also get my next Tysabri infusion on Friday (I think this is number 8?), so the week WILL end with a big bang or *banging* in my head from headache/body aches!...


TEAM H.O.P.E. said...

Is it wrong to feel a little bit sorry for Goliath (Club Med) because we can see his defeat coming and he is so clueless?

Anonymous said...

While you are sitting getting your 8th Tysabri infusion, consider which one of the TV media special investigations reporter in YOUR own hometown would most likely jump at this story.

Then call 'em.

Even if Club Med resolves, it is still not ok. This has been going on for months and they have proven they are not user friendly.

The media loves to hear stories that can be proven with your wealth of paperwork regarding price gouging for drugs - especially big places like Club Med and for drugs like Tysabri.

I am sure Biogen has some idea of what is going on. I can't believe they are in the dark about how their drug is being administered and what the costs are. They have a marketing plan which goes to the smallest detail and that includes how facilities administer their drug and what costs are involved.

You have just scraped the tip of the iceberg. Go Girl!!


I do like Anne's idea of a video record of your upcoming infusion. What a perfect opportunity to get this story started in the media.

Although one commenter on your previous post mentioned switching to a non-profit facility, I believe that would NOT make a difference. Nowadays for-profit and non-profit really seem to make little difference.

As you could tell from response (last month?) from one of my insurance blogger buddies, the excess spent in the overall healthcare system for health care delivery is too often unrecognized.

This has potential to be a REALLY BIG story which just might make a difference. I'll be thinking of ways to help you get that story out. The cogs are rolling....

Anonymous said...

I think these ideas are great. I live Seattle with "possible" MS, and I keep looking for clues in your Tsybari posts trying to identify "Club Med" and avoid them if possible.



I feel I must answer your comment here by telling you, the CARE I receive at Club Med is excellent, both by my neurologist AND the infusion nurses where I receive my Tysabri. This should not be confused with the BUSINESS PRACTICE of Club Med. I stand by my claim that I see one of THE leading MS Specialists in the nation...who happens to work at Club Med.

I have also received MS care at another "leading" hospital facility in Seattle, who frequently makes the TOP TEN list of Hospitals of Excellence...I switched from this facility because the neurologist I saw there (who, BTW, was ALSO an excellent physician) worked within a completely disorganized clinical branch of this facility. I could no longer tolerate the incompetence of the CLINIC staff there, so I switched facilities/neurologists to escape that system. I am VERY happy with the care I receive via the CLINIC at Club Med and feel I am in excellent hands. My "issues" are with the billing practices of the HOSPITAL SYSTEM, which you WILL find exist throughout the ENTIRE hospital networks in the region...they have found a way to capitalize on a marketing niche and, IMHO, are exploiting it, much like what occurred with HIV/AIDS patients when their expensive medications and treatments first came about. It is an unfair and greedy capitalistic practice that drives the cost of health care up for EVERYONE in the system, not just MS patients.

Nuff said?


Spaz Attack said...

Hey ya Braingnificent

Thanks for informing me about the multi Invester -- they sure are interested in what you have to say. So to put my two cents in Tysabri costs too much and has too many hoops to jump threw, so until that changes I'm done considering Tysabri.
As for you, Missy Cheese, you speak because of a powerful, innate desire within you to speak up when there's "sumthing rotten in Denmark." None like conflict, but I as a person with MS I'm so appreciative of your powerful voice and that you're not an ostrich who tries to stick her head in the sand -- pretending not to notice.

So, keep it up BABE, however, if you're brain is hurting, stop, rest, and take up the fight another time. You gots enough adrenaline rushes going on in your life.
I'd advise you to be balanced, but you know by now I don't practice what I preach -- which is why I have DAYS I'm dazed, fatigued and can't get out of bed.
After spending 4 dazed days I'm back to assured I gots your back Chick, so if ya want anything just hollar (LOL)

Shauna said...

Oh, yeah, you go girl......
I am so delighted to know you over this here interweeb and glad you are a friend. I'd not want to be a foe.

By the way, I also HATE conflict and avoid it when possible. One of our few flaws methinks, but when our back is up, and justifiably so, lookout world. You also have a unique perspective, being a member of the medical world.


have myelin said...

Call John Stossel! He's easy on the eyes and good with undercover cameras. Tehehehe.....

Denver Refashionista said...

Good for you, continuing to fight. Anymore it seems like I can hardly handle the day-to-day. Stay tough.

Blindbeard said...

Give 'em hell! I don't mind conflict when I know I'm in the right. Growing up in a family of conflict, it just comes naturally to us. It really pisses me off when I think about others profitting from our (or any) disease. It just ain't right, pardner.