Monday, December 01, 2008

Tysabri Billing Explosion...

Too much free time on my hands result in letters such as the following...well, too much free time on MY hands and a lot of help from Lisa over at BRASS & IVORY, that is!

I finally constructed (in the wee hours of my leg spasm morning Saturday) a 4 page letter to Club Med regarding my "issues" with them and their Tysabri billing practices. Then, in a pure moment of unusual wisdom, I sent the letter to Lisa for editing (thank you again, Lisa!) before emailing it off to the powers that be. Lisa was able to take my ramblings and condense them down into a nice, succinct letter addressing my concerns. I waited until last night to forward the "letter" to Club Med (one should always sleep on any communications involving threats...LOL) and I have no idea if *they* received it. Club Med's email system often blocks emails with attachments (removed attachments for purposes here) I have learned.

But here is an edited version of the EDITED letter...I removed (once again) the IDENTIFIERS for myself and Club Med for privacy reasons:


Ms. *You Know Who You Are* et al,

With great disappointment, I note the lack of action as promised by *Club Med* in response to concerns addressed in our 9/23/08 meeting re: Tysabri infusion costs and HIPAA violation at the *Club Med Campus*.

During our meeting, I was advised ALL *Club Med Clinic* multiple sclerosis patients receiving Tysabri would receive letters providing a clear, concise explanation of all charges billed by *Club Med* in reference to Tysabri infusion costs. As offered, I have refrained from further inquiry or reporting to provide *Club Med* with ample time to fulfill promises made. Over TWO MONTHS have passed without ANY indication that action on the part of *Club Med* has occurred.

As you may recall, my primary concern was the $9000 price increase billed for infusion services received at the hospital location, only 50 yards from the outpatient clinic at *Club Med*,which is no longer allowed to provide infusion services to approximately 80 Tysabri patients. The charges billed to King County/*Rhymes With Netna* insurance company jumped from $3,708.00 to $12,785.70 (a 250% increase), explained to me as being secondary to a separate “formulary” used by the hospital, while the infusion service remained IDENTICAL.

Since our meeting, I have chosen to move my infusions to the *The Other Club Med Location* due to grave concerns regarding the HIPAA violation at *The Original Club Med Site* which we discussed. As previously stated, I have NO qualms with the DELIVERY of services provided at *The Second Club Med Site* and I find the quality of personnel to be excellent.

Having received the EOB for Tysabri infusion on 10/3/08, I see that *Club Med* billed an outrageous $11,234.45 of which $7,114.00 was reimbursed by my tax-funded health insurance coverage. If I were to continue receiving infusions from within the *Club Med* health system, your annual collections for Tysabri infusions alone would be $92,482.00 (13 infusions per year). Extrapolate this to the approximate 80 Tysabri patients currently in the *Club Med* system, annual FEES COLLECTED by *Club Med* approach $7,398,560.00 (pending reimbursement contracts with various insurers, of course).

Consider that the IDENTICAL service was previously provided at the *Club Med Clinic* for a lesser reimbursement rate of $2,868.00, the annual fees collected by *Club Med* would only be $2,982,720.00 ($2,868.00 x 13 infusions x 80 patients). I have learned from an outside source that infusion services WILL NOT be reinstated at the *Club Med Clinic* due to a *Club Med Hospital* policy disallowing variance in charges for IDENTICAL services provided. I, therefore, presume that *Club Med Hospital* has a $4,415,840.00 YEARLY PROFIT incentive to prevent use of the more cost effective outpatient delivery system for Tysabri infusions.

Since I have received no letter from the *Club Med Clinic* to date providing a detailed disclosure of charges for Tysabri infusions as promised, I can only assume NO MS TYSABRI PATIENT within your system has been provided this information. Likewise, no confirmation that HIPAA RE-EDUCATION for the *First Club Med Hospital Site* registration staff has been given as well. You may recall that a patient's name, date of birth, and his procedure time at *The First Club Med Hospital Site* was released to me, in complete disregard of federal law, by *The First Club Med Hospital Site* registration staff during my registration process in August of this year. However, I have maintained my promise to the *Main Club Med* by NOT taking or promoting further investigative or reporting actions to my insurer, federal regulatory agencies, or the media.

My patience with this process is exhausted and now I offer you a limited time to show action has been taken on the part of *Club Med* to address my concerns and the promises made in our 9/23/08 meeting. Only TWO things were asked of *Club Med*, neither of which placed an undue hardship or burden on your business, and yet no response. Therefore, if I do not receive communication from *Club Med* regarding these issues by December 5th, I will proceed with the following actions:

1. Lane Hatcher, a national HIPAA consultant, has encouraged me to report *Club Med* to federal regulators, knowing that your business will not likely be fined for violating federal laws, but WILL be MANDATED to provide the re-education we discussed. Using ONLY his name and date of birth, I have LEGALLY obtained detailed demographic data via the Internet regarding the patient named in the violation. I will contact him to advise his private health care information has been breached so that he may seek action to better protect his records/information.

2. Customer Service for my King County/*Rhymes With Netna* insurer has suggested I contact the Provider Resolution Team in Lexington, KY, to discuss concerns regarding contractual allowances paid to *Club Med* which are above and beyond U&C for this region (and, in fact, the ENTIRE United States). I will speak directly with the King County Benefits Liaison to request a re-evaluation of their contract with *Rhymes With Netna* and that an oversight process be initiated to insure charges are usual and customary. Given the County's current budget crisis, I assure you this matter will be given full and swift attention.

3. I will release both my name and personal identifiers as well as the *Big Name of Club Med* to a journalist in Washington D.C., who has requested to make public Tysabri delivery costs obtained from over 26 patients and infusion sites around the United States. I have this information in my possession via spreadsheet and can assure you that *Club Med* is THE HIGHEST BILLED AND PAID INFUSION SITE IN THE NATION. Her survey includes both clinic and hospital sites from East, Central, and West Coast United States. She is awaiting my permission to print this information.

4. I will contact local media outlets to determine interest there may be in exposing the cost of delivery for Tysabri within the *Club Med* system as compared to other infusion sites in the region, including what taxpayers are funding via my employer, King County.

I certainly hope to receive communication from the *Big Ol' Club Med* System no later than December 5th so we might all lay this matter to rest.




Shauna said...

Go get'em Mama....
and yay to Lisa for the help.


Blindbeard said...

I don't think I stopped grinning through this whole post! I only stopped by to let you know you can copy what you like off my blog, especially if it will aid you "mental health freaks," which are my favorite freaks in the world.

P.S. I am coming back to catch up on your blog after I whip some lazy arses into shape. Keep givin em hell!

Bubbie said...

O Powerful Cheese...I bow to thee. I'd love to be that fly on the wall at Club Med when this hits the fan!

MS. ME said...

WOOO HOOO! I look forward to reading either your post on Saturday about the Club Med's response or the story in USA Today!! You go girl!

Tricia said...

Very nice! I hope they take you seriously this time. And if they don't I look forward to the backlash they will have poured on them by the system they are screwing!

Hubby's Tysabri has never been billed at more than $5K and the drug costs $2800 I believe - the infusion charge has been as low as $300 and as high as $3000 but if we got a bill for over $12K I would be doing exactly what you are doing! It's ridiculous!

Anonymous said...

Very good. I wish you would contact one of the bigger news sources like World News Tonight on ABC or John Stossel or any investigative reporter of your choice/liking. This should be getting national exposure because this is not the only hospital doing this.

You have more proof than anyone else I've seen in regard to their misdeeds and for that reason I think you should go public and pro-media.

Go Get Em!!!

Anonymous said...

The research shows that for profit health care organizations provide low quality health care services for inflated prices. I wish you could switch for a non-profit provide such as Mayo Clinic.

Anonymous said...

I've been reading from the sideline with great interest! Your approach seems reasonable and direct as you have outlined a billing travesty that we all read about in the press but now are living with you on your blog. There are many who support your efforts and adore your wicked sense of humor.

Merelyme said...

wow! this is a very impressive letter! I like Anne's suggestion. Maybe some big time media sources could help here.

harkoo said...

Great letter--will look forward to reading the response...

Denver Refashionista said...

Way to go ladies!

Jen said...

Oh my goodness. I wish I had the team of Linda & Lisa on my side when I had to appeal a stupid insurance denial last year. It would have been resolved quicker with you guys!

Spaz Attack said...

You go Girls. Your powerful voices and smartass, er, smart minds are in demand and helpful to ALL those who need "specialty Meds."
May the force be with you!

Spaz Attack said...

Why are there so many readers of your blog from around the world with a feed from
Inquiring minds want to know.

Webster said...

What a well-crafted letter; you must be exhausted after putting so much energy into it. Thank you for speaking up for not only yourself, but for the many who cannot.

Anonymous said...

As a person who benefits from Tysabri my kudos to you!!! I have been banging my head against the wall over this very issue. My insurance covers my entire bill, I get my infusions in the oncology unit at my local hospital and the infusion costs are actually very reasonable. I had never seen a bill until I hit infusion # 13, when one was sent to me in error due to the hospital not understanding that the schedule was EVERY 28 DAYS. I was shocked to see that the bill was for 10K+! After asking for a copy of that bill, I found that although the infusion costs were reasonable and at par for the area, the cost of the drug was 6500.00+!! I KNOW what the wholesale cost is and I went right after them. I contacted the insurance co. about it and they were very lackadaisical about the charge. The supervisor I spoke to at length had the temerity to ask me why I cared!! My lifetime coverage is One Million Dollars! At the rate they are paying for the drug, my lifetime benefit will be exhausted in less than ten years! I am still working on my end to remedy this.

I have talked to a number of people(especially CA people) who have had to go off Tysabri due to their infusion center costs. Their drug charges are nowhere near what my ins. co. is paying, but their infusion costs are ridiculous, and their ins. is only paying U&C and they are getting stuck with the rest.
I cannot wait to see what comes of this from your end! Keep us posted and THANKS!

( 21 infusions/NO relapses/NO progression/Return of almost ALL deficits!!!)

Abby said...

GREAT Letter! I also grinned through the whole post. This is filled with facts that will have them pulling their hair out!


Linda, This is cool stuff indeed. With the wholesale price of the Tysabri being 'only' $2400 (according to sources), anything billed above $3000 really seems excessive. I'm so glad that you are pursuing this. kudos.

pUNKrOCKfairy said...

Go get em, Tiger! So many people, myself often included, feel certain they are being taken advantage of by the world's "Club Meds" but aren't sure how to do anything about it. Thank gawd you and Lisa are advocating for the rest of our ignorant arses!

Anonymous said...

Response I received by email from Elan to this situation:

Dear Mr. xxxx,

Thank you for your recent email to Elan Investor Relations. We are aware that a very small number of patients are having issues with infusion costs. We are able to direct them to less costly centers or work with them on strategies to ease their burden. If you know of any specific patients having trouble with reimbursement costs, please ask them to contact the companies directly for information at 800-456-2255.


Elan Investor Relations


Dear Anon,

The response you received from Elan is almost laughable. This issue is bigger than mitigating the infusion costs for an individual patient, especially as this patient has no out-of-pocket burden.

Thank you for sharing this information, however.