Friday, August 29, 2008

This is Tysabri

This is Tysabri. It's not an injection like the other MS meds, so there's no syringe. It's just a vial of liquid gold for many MSers. This is the stuff that costs thousands of dollars, a ridiculous amount of money but for many people this is their treatment of choice. This is often a treatment people move to after trying and failing some of the other MS medications. I've had my two strikes already with Copaxone and Rebif.

I'm hoping that I can afford this medication monthly, that I can find an infusion center with flexible hours and days that work for me and with me, and lastly, I am hoping that this will be like a teeny tiny time machine that will bring me back to an earlier time in my MS when I was feeling much better than I am now. I am hoping for the miracle!

I read another blog, several actually if you look over at the side of this page you'll see the list, and the woman aka Brain Cheese who writes it (who is fabulous by the way!) has been talking a lot about the cost of Tysabri and her insurance. To read more of this, click . There appears to be a wide spread of costs for the medication and the infusion center charges.

I know about the infusion centers' charges' variances which really can vary quite a bit. The drill is the same no matter where you go; they have to follow the TOUCH protocol which consists of asking specific questions and handing you the same information each time, hooking you up to an IV to receive the Tysabri, and watching you on-and-off for the two hours that you're there to make sure there are no adverse reactions to the medication. Yet each infusion location can charge all sorts of amounts to your insurance.

My neurologist's office wants my infusion done there, which makes sense coming from a medical perspective and a financial one on their part. However, they only infuse Tysabri patients once a month. One day a month, never on Fridays because they only are open from Monday through Thursday, and you must adjust your life around that one day.

The Tysabri company which is Biogen Idec called me yesterday after receiving the paperwork from my neurologist's office. We talked through a lot of information and I asked about the chance of not being cleared for an infusion on that "one day a month" and then having to wait a whole other month to be infused on the neurologist's schedule.

I had to explain this several times to the representative I spoke with before she could understand what I was saying and she said that waiting another whole month isn't following the schedule. No duh! She suggested we look into alternative infusion facilities which we found through the Tysabri website and there are about 5 others located around the same area, which is about an hour from my apartment home. They're going to look into the availability of days and times and their costs and compare it to my neurologist's office.

That's great, but she also mentioned that I may have to switch doctors if I choose another facility. Why is all of this so darned difficult? I thought the whole point was for me to feel better and do better with my MS. Isn't this all supposed to be about what is best for me, not what is best for my doctor? Sometimes I wonder ...


SwampAngel65 said...

Oh, I hate it when things start to get so complicated...things that should be relatively simple. You have to do what's best for you. Maybe talk with your doctor (if you really like your doc and have a good relationship with him) and get his opinion on the whole thing. Maybe it would help?

Weeble Girl said...

I like my neurologist but I don't ever see him; I always see the Nurse Practitioner now. I feel like "one of many" in their office and I don't always feel like I get the best treatment.

This is my fourth neurologist and there are others I could bounce to but I'm scared silly I'll be jumping from the frying pan into the fire, if I switch again.

The first one dismissed me, second one diagnosed me but was head of the Stroke Clinic here and not being a stroke patient I got almost nil care, third was an MS Specialist but she left the area, and that brings me to my new neuro #4.

It will all work out somehow. It just HAS to!