Sunday, October 19, 2008

Getting Back To The Tysabri Issue...

Still functioning marginally well with the IV Solumedrol on board, and wanted to get posted up some preliminary information about Tysabri infusion sites. I have much left to tell about my Club Med ongoing battle of the "bull" and my complaints about their charges/costs to distribute this drug to me once a month. I'll be getting to that soon.

But I've begun to notice a lot of "hits" here on CHEESE of people searching for Tysabri information SPECIFICALLY relating to cost, so I wanted to address HOW to find a TOUCH certified infusion center near you and HOW to go about determining what they are billing/what questions to ask to see if you are eligible for their services at a possibly LOWER distribution fee than where you are getting your TYSABRI infused now (or are considering getting it infused, as the case may be). is the website to turn to when looking for infusion information. When you first log on to the site, you will get THIS screen:
You have to click the orange button over there for "Multiple Sclerosis Tysabri Patients" to be taken to the next screen, which looks like this:

Now, here is where the Tysabri folks don't necessarily make things easily clear on their website (and I have talked with a representative about this in hopes changes might be made). Off there in the far right hand corner, you may notice a small, red connecting link that tells you to "click here" to find an infusion center near you. It's where the arrow is above.

Click that link, and you are taken to the above page, which will ask you for either your zip code or your state of residence and how far/what radius you are willing to travel to GET your Tysabri. ONLY FILL IN ONE OF THESE LOCATORS...either the zip code or the state...because the site has a tendency to "lock up" if you do both. You can still add your radius location, just not both zip code AND state.

Once you've done the above specifications, the site will soon spit out a list of TOUCH certified infusion centers near you (in whatever mileage radius you requested above). It will give you names of the infusion centers, addresses, phone numbers, how far it is located from your zip code, and whether they are accepting new referrals. I have found the "new referral" issue on the site NOT to be accurate because I've gone ahead and called some that say they AREN'T accepting new patients, and I've been told they ARE. The page will look something like this:

Once you have opted WHICH infusion centers you want to try to connect with, I suggest having a list of the following questions in hand and be prepared to write down their answers for your own notes and reference as well as WHO you spoke to on the phone. If, like me, you call several places, you will find there is a VAST difference in what each of these centers is CHARGING to infuse you! I suggest anyone on Tysabri do their own homework and find a site that BEST meets their personal, travel, and financial needs.

Here are the questions I suggest as a beginning point of reference:

1) Do you accept outside referrals from physicians not affiliated with your program such as ______ neurologist?
2) If yes, are you accepting new referrals?
3) Do you accept _____insurance?
4) If yes, what is the cost billed to ____insurance or paid by ____insurance and does this include the cost of the Tysabri or is the medication provided via an outside specialty pharmacy by my insurance company to you?
A. Or do you have a flat fee billing for every Tysabri patient?
B. Does this cost include necessary laboratory fees?
5) Do you have a "private pay" option?
6) How long have you been TOUCH certified?
7) How many Tysabri patients are you currently infusing?

I'll write more about this later...enough for now, because I'm steroidally challenged and have no more focus here!....

1 comment:

Denver Refashionista said...

Thanks. Great post/visual aides.