After "lurking" here for many months this thread has caused me to join and participate. I am the mother of a really wonderful young man, in his early twenties, diagnosed over a year ago with RR MS. He has been on Betaseron since diagnosis. His neuro, possibly the same one that Flora68 goes to, was a participating physician in the Tysabri trials and feels that our son is a good candidate for Tysabri. We were informed, on about the same date that Flora posted, that the cost submitted to the insurance company would be $4,000 per dose. As this was a lot higher than this office had initially indicated, I spoke at some length with the infusion nurse and later called the Tysabri line.
First, its starting to appear that the $4,000 figure for submission to the insurance company is probably not way out of the ballpark based on other postings that I have seen here and elsewhere. The $1809 amount is the WAC - Wholesale Acquisition Cost - I don't know that a neuro would be able to purchase at that price. I once worked for Pfizer and the wholesale price was not the purchase price - there was always a supplier taking a cut. I've talked to some friends who work in hospital settings in major cities, and looked back at the bills for my parents' chemotherapy and infusion fees around here can be over $1000 without considering the additional hour of monitoring which we all understand and want given the possible reactions.
It was explained to me that the insurance company will then reply with the "customary" amount that they are willing to cover - that's the operative number. In our case 70% of this customary amount will be covered by the Major Medical portion, not the pharma portion, of our medical coverage. We pay the balance up to the annual deductible and then the insurance company kicks in with the balance for the rest of the year. That left me still not knowing how much the drug would cost us out of pocket. I also went back to research some of the bills that our insurance pays and realized that I ought to pay more attention - in fact the allowed charges (in network) are typically not much over 50% of the office invoiced charges. Xrays tend to be reimbursed at about 33% and some tests at only about 25%. But since we never get billed for anything over our deductable we had the luxury of ignorance at least in terms of cost. The $1242 for Betaseron has been covered completely. I take one prescription that costs me $10 but has a price to the uninsured of $125. So who doesn't think that this is a mess that has to be addressed?
My next move was to call the Tysabri line early this week with 2 questions: one about the price and the other about the reports on this site of deaths.
First, there are a number of people on that line who work with potential patients and their insurance companies to get hard and fast numbers as to the out of pocket costs prior to infusion - each insurance company and policy is different and they are understandably more than willing to help a patient through the maze once they have signed the request form at their doctor's office.
Second topic: I've worked in the software business for way longer than I like to admit and I don't believe much that I read on the internet, particularly when it's already hearsay so I initially dismissed the rumors of deaths. I did some research on the web and came upon numerous trials that were stopped after a death occurred, or even after specific risks were increased. But some of the people on this forum seem to believe that this could be a reliable report -though it is second or third hand - so I set out to find an answer and frankly I didn't. The Tysabri line is pretty tightly controlled. I talked to two different people - both told me that they are very tightly controlled by the FDA under the terms of the early release and that all calls are recorded and that they cannot say anything positive or negative about the data that is not released yet - ie the Phase III data. BTW, each conversation began with a reading of the warnings about Tysabri. Both were extremely pleasant and seemed to be sincere is their desire to be helpful.
I then called the FDA - not easy to reach a person there when you call in. Interestingly I left a relatively generic message and within an hour had a callback on my cell phone! I described my concerns and was again told that even a request under the FOIA would not budge any information, positive or negative, about a trial that was ongoing. I switched tactics and asked what specifically would cause a trial to be stopped. I was initially told that a death from a drug in a trial would stop the trial although its really not that cut and dried - the word "situational" was used - they would investigate the situation and determine if the (hypothetical) death was caused by the drug, or perhaps the way it was infused or other aspects of the situation. I was told that any death which occurs during a trial is investigated and weighed against the perceived benefits of the drug - ie we all know that chemotherapy can kill people.
I don't really want to fuel the debate re the reliability of the quote - unless someone is willing to make their own statement clearly including dates and places, its hearsay as far as I am concerned. There is no doubt that Tysabri can cause some nasty reactions and I am certain we will hear about them as people have their second and subsequent infusions. I hope that others will attempt to get some definitive answers and continue to share them here. I think it would be great if we could put enough pressure on Elan or the FDA to make a statement but I am thinking it is unlikely. I hope others do call requesting more info and post their information here.
I just want to say thanks for the time and energy that so many of you devote to this forum. It has become a great source of information for me and always helps me to think in alternative ways about fighting this lousy disease.