Friday, August 22, 2008

Tysabri's Hidden Costs...

I am lying here in bed staring in utter disbelief...still. No, there's nothing pornographic going on in my sleeping lair! I'm talking about the pieces of paper in front of me...EOB's...Explanation Of Benefits. The pieces of paper that my insurance company provides me (as the insured) explaining what they have paid out regarding my Tysabri infusions.


This is the recent amount Club Med billed my Gold Card insurance for infusing my latest dose of Tysabri on July 29th. Yes, you read that correctly...OVER TWELVE THOUSAND DOLLARS!


That's the final amount my insurance company PAID Club Med for the above bill.


That's the amount my neurologist's office billed for my Tysabri infusion on April 8th.


That's the amount my insurance company PAID my neurologist's office for my April infusion.

Does anybody ELSE see a problem here?!? WTF?!? I walked less than 100 yards from my neuro's office to Club Med and this less-than-a-football-field walk ended up costing OVER FIVE THOUSAND DOLLARS!

OK, news flash...I am NOT after all, going to be billed $4,000-$5,000 dollars for my two Tysabri infusions that have already occurred at Club Med. I can breathe again and NOT have to contemplate gun ownership. This piece of information alone should have me whistling "Party On" out my butt. BUT(T), it doesn't. There's a really big problem here and one that I will not be quiet about! I believe my insurance company is being GOUGED. And I also believe it is this very practice that pushes everyone's cost of health care over that imaginary edge.

I have spent the past two days emailing and making calls about this issue because my a$$ is so chapped about the matter I can barely sit down comfortably. I have been taking names. I have been dropping names. Words like "audit" and "State Insurance Commissioner" and "local newspaper" and "line itemization bill" have been spilling out in emails. Dr. She Who Will Not Be Named has forwarded the situation all the way to the top of the Club Med Food Chain. I have threatened to be arrested for trespass while sitting outside the Administrator's door if I have to. SOMEONE needs to provide me some answers about this exorbitant jump in fees just from changing a LOCATION of where I am being infused.

Dr. SWWNBN has politely asked me to remain "calm" while she works on the issue from her end...I have promised her I will remain chained to my dog house in my yard and await her response. I can do nothing about my rabid nature, however. This situation has my blood boiling and my mouth foaming...just call me Cujo.

It is bad enough Tysabri costs (this is the latest estimation I could find) around $28,000.00 a year JUST for the medication, making it the most expensive DMD available to treat MS. NOT TO CURE MS...just to TREAT it. One practically has to consent to monthly anal probing just to OBTAIN access to the drug due to the hypervigilance of the FDA and the TOUCH controllers. Add on the PRICE-GOUGING INFUSION CENTER charges, and one could be looking at spending anywhere from $80,000.00 a year to $110,000.00 a year. I don't know about YOU, but my employer has capped my life time insurance benefits to 2 million.

I used to think $2,000,000.00 was a lot of dough...apparently, it is NOT. At the rate Club Med is charging me (and mind you, this would be MONTHLY), I will burn through my life time maximum coverage allowed in around 10 years (I've already used several thousand dollars of that amount in the past 8 years I've worked for my employer...MS bites the big wallet) and this isn't even taking into account catastrophic illness or, GOD FORBID, a hospitalization for MS.

Lauren left a comment on the previous post about the high cost the infusion centers are charging. This got me thinking (and believe me, THINKING can be dangerous for me!). I wonder how many others taking Tysabri right now are AWARE of what their infusion sites are billing insurance? Any clues on this? I'd LOVE TO KNOW WHAT OTHER PEOPLE ARE PAYING FOR THEIR MONTHLY INFUSIONS (and not including the cost of the Tysabri...that is a preset amount negotiated by your insurance company). I'd LOVE TO SET UP SOME SORT OF TRACKING HERE ON CHEESE TO GET AN IDEA ACROSS THE UNITED STATES WHAT INFUSION CENTERS ARE CHARGING.

Anybody out there on Tysabri want to play along with this game? If you know what the infusion center where you get your Tysabri is charging (you can find this out from your insurance company), please leave a comment and I will accumulate numbers and geography and see if there is any rhyme or reason to these charges.

In the meantime, I'll just be chained here in my yard foaming at the mouth...


Shauna said...

I'll start calling you Old Yeller. Appropriate, don't you think? Go get 'em, girl.


Tricia said...

Oh it's insane alright! Pete has been to 3 different places for the infusion and the rate varies greatly what they charge.

And there is no consistency from time to time either - for example the latest location where he has had the last two charged $6287 the first time and $4768.16 the second time FOR THE EXACT SAME THING! These are still pending so I'm not sure how much they were "allowed" but in the past they pay approx $3K for the drug and $150-200 for the infusion therapy - THAT's IT.

He was at an infusion center for awhle that didn't charge for the drug and it came from our specialty pharmacy and that place billed:

$350 - insurance paid $152.62
$475 - insurance paid $248.65

Then the first place he went to billed:

$5198 - insurance paid $2660.54
then there were three more billed at the same rate that the insurance only paid $157.94 - for infusion only and refused to pay for the drug because the place hadn't filled out the proper paperwork to get it authorized. Thankfully that is over $8K of Tysabri they are NOT allowed to come after us for according to the insurance company and I think they are still fighting it out.

It's insane to me the variation in charges and payments for THE SAME THING! Sheesh. But your $12,000 does take the cake for sure talk about GREEDY BASTARDS!

Blindbeard said...

Love the Cujo reference! I too like to foam and rant at... well anything. One of my favorite past times. My infusion center charges come to about $58,000 per year for Tysabri, but my almost ex husband works for UPRR and the insurance is GREAT! My co-pay is a little over $300 a month for my Tysabri. When I was on Copaxone we only paid $5 a month for it. My neurologist said I have better benefits than he does! And I am still having them send the bills to my ex, my being too poor to be living still.

Side note: It is too bad we do not live closer to each other. We could cackle and be irreverant about MS together and shock and horrify those more serious sticks-in-the-mud. I saw a shirt yesterday that summed it up the best. It said, "Ask me about my explosive diarrhea." It made me think of your comment about topping my performance of pissing myself while bleeding like a stuck pig! Much love as always, BB

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

Mercy sakes. So very relieved that you will continue to receive your meds and not have to sell your home, your body, or your soul to do so!

My experiences with healthcare have been hospitalizations of myself and a loved one - so to be honest I was surprised that after 5 years of this disease you had not reached the two million dollar mark. Reading an itemized hospital bill is a surreal experience.

I am looking forward to seeing your graph or chart or map of data. Should be very interesting. I see a morning news segment in your future.

Well, up until you open your potty mouth at whichever perky blond "news anchor" is lucky enough to interview you!

Anonymous said...

That is outrageous. They're working on a subcutaneous version of Ty, but who knows how long that might take to market. I hope you have good luck pursuing this, and take care. -paul.


Hey Linda, I think you're on to something BIG!!

I hear (way too often) from health policy folks that people don't really care what the cost of healthcare is, they only care what their copays and deductibles are.

I say, wtf, of course I care what it ACTUALLY COSTS!!! That money has to be shifted from somewhere. So where does it all end up?

You know, this is the type of random analysis which I strangely love. I'll be looking forward to the information you gather.

There could be a good story here.

P.S. I find it almost humorous the amount of comments being left on blogs of folks who have expressed any amount of hesitation with the recent PML news and Tysabri. There's some serious reputation damage control going on.....

Xenu said...

Hi. I just wanted to say that I like your blog and I'm linking to it on my website, provided that is OK with you.


Tricia said...

Wow BlindBeard I assume the GREAT insurance comment was sarcastic? $300 a month co-pay for the Tysabri? I thought I had so-so insurance but our co-pay is $20 per infusion. I can handle that. Yikes $300???

Lauren said...

I feel almost guilty posting this information, but you asked for it:

I am on Medicare and I have a Medicare HMO, therefore I pay nothing for my Tysabri infusions... but believe me, it was a "tooth and nail" fight for me to get the HMO to add Tysabri to their Formulary, and then to have them agreed to allowing members of the "Senior Plan" (which is the Medicare portion of their HMO) access to the medication. I had to threaten to report them to the CMS (which is the California Medicare System) because they were not allowing their Medicare patients access to the drug... I had to remind the HMO that if Medicare agrees to pay 80% for the infusion, they obviously feel that the medication is worth it, and by denying their Medicare patients access to the drug, they were in violation of the CMS rules.

Needless to say, the HMO did not want to lose their "Medicare HMO Status", and because I did my homework as to what was and was not allowed under the Medicare rules, the HMO finally gave in to my threats, but I honestly would have reported them. I was not about to put up with their BS, after fighting so hard to get this medication back on the market by testifying via videotape before the FDA AC in March 2006.

If we all collectively put our heads together and fight for what we believe in (having the facts to back it up), there is nothing we can't do..., go Linda!

Lauren :)

Zee said...

OMG, $12,000? That is ridiculous.

I've finally started getting EOBs for my Tysabri infusions, and the total cost billed to my insurance for one infusion (2 hours of sitting there plus the questions from the nurses plus the time it takes to put in the IV) is roughly $3700. The drug itself is the bulk of the cost - $3278 - but the infusion center charges $378 for their services and the lab charges $66.50 for the solution. (Which, um... seems just a bit high to me considering it's a bag of sterile saline solution plus some tubing. Sheesh...) The infusion center's final payment (after insurance chips in) ends up being around $340.

Anyway, glad you're pursuing this - good on ya! Go CHEESE!

Robin said...

Let's all stop complaining and get out there to be sure Obama wins in November. There will be no change in this insane insurance industry and pharmaceutical coporate profits until he wins. Seriously, as a physician myself, the best thing we can do is mobilize everyone we know to vote for Obama.
McCain's health plan call for a total de-regulation of the health insurance industry. Know what that means? Insurance companies will have free reign to cover or not cover whatever they please. Bet they choose not to cover Tysabri.

Anonymous said...

Went from an independent neurologist who specializes in MS and was charging roughly $3k each month, to a large university medical center for insurance reasons - the neuro was getting paid squat, so withdrew from participating in ALL networks (I read the EOB's and can't really blame him.) The new medical center charges $7500 for the same thing. Ugh.

chomsky said...

We are fighting the same battle right now. We were paying $30 to have my husband's infusion at a neurologists office who ordered it through insurance approved specialty pharmacy. The Tysabri was $2700 billed to the insurance and we had no copay. The neuro is retiring so we have been trying to find a similar situation. If we go to an infusion center the cost will be no less than $530--this is with the exact same insurance. The infusion center uses a "wholesaler" and so won't use one of the insurance approved specialty pharmacies. We'll keep looking. If we can find a neuro who will infuse in office we can pay the $30 copay again. It's ridiculous.

NVpioneer1950 said...

Just attended a Tysabri presentation tonight and when a question on cost came up, they said it was "individualized" to insurance plans. I'm on
Rebif and it's billed at $4800 per month - and I self-inject! My co-pay jumped from $40/month to $2000 Yep. Three zeroes. I laughed out loud. After some semi-nasty calls to my insurance (who'd changed my co-pay) the drug co. has agreed to pick up the bulk of the cost (for a year) leaving me with only $50/month co-pay. What a racket. Oh, and if someone thinks government control of health care will be an improvement, take a look at the poster child for government programs: the reservation system for Native Americans. Dismal failure. Good luck to all of us and may the Force be with us!