Wednesday, August 20, 2008

When It Rains...It's Just Another Day In Seattle...

Short post tonight...I'm just too worn down to say much right now. It IS raining outside this evening in Seattle. That's really not anything new, but since this hasn't occurred in several weeks here, the cooler, moist air is note-worthy.

I just found out today that my TYSABRI infusions are on shaky ground...well, not really earthquake shaky...more like may not happen shaky. As most of you know, I had been receiving my TYSABRI via my neurologist's office. Well, except for that one infusion in May where I had to get that "urgent" MRI to prove my neck was the cause of my hand numbness and NOT PML...I went to Club Med for THAT infusion. Then, this past month, my neuro's office informed me that I would have to return to Club Med for my TYSABRI infusion because the office infusion nurse had retired...go figure.

So, I received ANOTHER infusion in July at Club Med...within the hospital...assured everything was "right on track"...and I scheduled my NEXT infusion for August there as well.

Today, I was informed Club Med will most likely be billing me a gazillion dollars (like seriously somewhere between $4,000 and $6,000 big ones) for my two infusions there because the hospital is not set up to accept "specialty pharmacy" medications.


Because TYSABRI is so frickin' expensive, my health insurance uses a "specialty pharmacy" to provide the medication to external pharmacy sends out the medication (as a means of controlling cost), usually to my TOUCH certified neurologist's office. Otherwise, I would be billed a portion of the medication if I went directly through my insurance and not use the "specialty pharmacy". That "portion" is itself several hundred dollars...I pay a copay of TEN DOLLARS if I use the "specialty pharmacy". I can't imagine anyone in their right MS mind getting their TYSABRI any other way! $10.00 versus $300-$500? Yeah, even I can do the math on THAT one.

Club Med (I am told) is not set up to "accept" external "specialty pharmacy" medications, yet they DID...TWICE...and now claim "oversight"? OVERSIGHT MY BALD, LILY-WHITE ASS. The hospital pharmacy had to KNOW the medication they received in the frickin' mail didn't come from their usual source!?! But, I...the the one to blame.

It's not the $4,000-$6,000 dollars that causes me to break out in hives and search local gun shops for a good "deal"...although I DID nearly swallow my back teeth on the amount.'s the fact I may not be able to AFFORD TO RECEIVE TYSABRI AT ALL. Unless I can find another doctor's office or out patient site willing to accept me on their roster.

Part of me (that evil twin side) is ready to just throw my hands up in the air wildly to my sides in Christ-like fashion and declare, "It is finished". I don't want to BATTLE over this anymore. I didn't WANT to continue the medication in the first place because of the side effects I was experiencing. But now that I've grown USED to the headache/joint pain/fatigue post infusion, I've begun to notice a stabilization in my MS symptoms for the good. I believe the TYSABRI IS HELPING ME...I've embraced the medication...I'm finally feeling as if I am getting my body back.

But at what cost literally? Is my mortgage more important than the medication? I wish, instead of the Biogen label warning on the drug letting us all know we run a 1:1,000 risk of developing PML, they would ALSO add a warning that the medication could result in financial destitution IF YOU HAVE A JOB AND INSURANCE. I thought all this time the purpose of my GOING to my job each day was to KEEP my Gold Card insurance so I could AFFORD the medications that KEEP me GOING to my job...funny how having a job/insurance now does NOT work in my favor...

Hmmm...for having very little to say, I sure spewed a lot here. Guess I'll go to bed and listen to the rain outside. Can't be any more depressing than listening to the negative chatter in my head...


Tricia said...

Call BiogenIdec and make your Tysabri case manager figure this all out for you. The insurance company should still pay the hospitals bill IF the doctor's office did the paperwork to get them approved. If there is one thing I know about it's the hoops you have to jump through to change infusion sites. Hubby is on his 3rd site now. 1st site - no specialty pharmacy - they just billed the drug and had to accept what the insurance would pay. 2nd site - drug shipped from specialty pharmacy - no issues. 3rd site back to billing the drug. In every case they were paid by insurance because they were pre-approved sites.

Make Biogen and your Dr's office do the leg work. You have enough stress. And if they bill you DISPUTE the charges!

Steve said...

Jesus. I hate that crap! :(

Miss Chris said...

"Specialty Pharmacy" means nothing but red tape.

I've been a lazy blogger as of late but I really missed your writing. I'm so glad to be back in the swing of things and making my rounds.

Anonymous said...

Oh Linda, what a mess MS is....I hope you can find another office who can infuse you so your costs stay at a level you can afford.

What the hospital is doing is ridiculous! I once had a hospital bill of $200,500 AFTER insurance paid.

I told them I was putting them on Anne's payment plan of $5 a month (my income was about $1000 month stipend when I was an intern). Interns did not get free treatment in those days. Now they get 50% off their bill, then submit to insurance.

Anyhow, every year they wrote off 25% and the bill was gone in five years because they are allowed to write off so much each year from each patient. And that was the only debt I didn't carry with me after medical school.

Talk to the facility to see if they can work with your insurance company because of the circumstance in which you USED to get the drug and how THEY are handling it.

Good Luck,

Sara said...

take a deep breath, let out a really long & LOUD scream, take another deep breath and I think you'll feel slightly better . . . sorry that's all I've got for advice on this subject, xx

Merelyme said...

oh geez...that just absolutely sucks! it is bad enough to have MS but to have to go through so much bullshit just to get some help...i feel for ya.


Yes, money/insurance bullshit. Bleh!!

Hey, Linda, Chris, Tricia, Merelyme, Sara, Anne, Steve,
I've got a support project underway.

Denver Refashionista said...

WTF. That is some lame-ass crap. It is so not your fault. I hope that you don't have to pay that bill. I also hope you find a new viable Tysabri source.

Blinders Off said...

I agree with Tricia, it is not your fault and you are not liable for their mistake.

Let them do the legwork because when I thought about taking Tysabri my Neuro office did the paper work for approval with my insurance.

Lauren said...

Linda, you should contact your Tysabri Case Manager at 1-800-456-2255 to not only explain this to them, but to ask for the names & phone numbers of three Touch certified infusion centers near you that you can switch to.

The problem is not the cost of the medication, its the inflated cost that the infusion centers are charging. Biogen has programs that have been set up to assist MS patients who are unable to afford large co-payments. Their initial goal is that the Tysabri co-payments should be no higher, as a percentage of the total cost, than for the CRABs.

There is nothing wrong with shopping around for the least expensive infusion site that refuses to charge an arm and a leg to administer Tysabri.

Furthermore, if you have "Major Medical" listed on your insurance, your Tysabri infusions should be covered 100%.

All my best, Lauren