Natalie,

The weather here in Riveriside is a comfortable 72F, with a mild breeze and clear skies. I bet that San Diego is similar, although one of my friends at PB told me that the breeze is picking up.

Our house is listed/owned by a charitable trust for these medical reasons specifically.

I too am happy so far with the Tysabri stability/improvement. So far, so good. :)

-Vic

(P.S. Technically, I am a scientist:rolleyes:...but I never really think of myself in that light. I prefer outdoor biological/natural history work over the cell-squishing & molecular work.)



Hotfoot,

Welcome to the Tysabri train and NeuroTalk! You will find a ton of great advice and information here.

Don't be nervous about Tysabri. It is a simple infusion that lasts a couple of hours. You will get to sit/recline in a comfy chair during the infusion and that will give you time to read, sleep or listen to music. It is very simple.:)

Enjoy!

-Vic

Victor - on this one I know what I am talking about. Cost of TY is 2500. per dose. That is what the Drs Pay and I can prove it! Final cost is up to where you have the infission at. I have 1 DR office local that does infusions and 1 hosp. I go to the Dr/neuro office - my choice with no regard to cost. I'm told the hosp cost is much more - I am a germ phobic - hence my choice.

I'm sending u a pm w/name .... excluded ... I hope this will help you ... bottom line is my ins is contacted to pay 3000 approx. per infusion. I took this ins b4 I knew about the MS. Maybe u did not - I don't know. I had no idea I had this S------.

I received a letter yest trying to deny converge - I did the wrong thing - I yelled - screamed ... at them. Then I called my ex and he calmed me down. For me I am 100% non - preexisting per my ins. lines. If I get denied. I'm putting every da-- cent on the line and going against them. I did not know when I applied!!!! H----- I would have been in treatment. I'm not a fool.

Sheena,

Thanks for the PM.

My insurance plan was purchase after my diagnosis. Hence, BC/BS has always know about my MS.

The Huge Tysabri cost that I pay is because of my high deductable. BC/BS does pay $2,050 for each bag of Tysabri, and I have to cover the remaining cost, the infusion center cost and the insurance premium. Hence, my annual bill is $45,000...and that is ater long-term negotiations with all of them.

You see, when they know that you have some money the will take every drop of blood that they can. When the well has dried (and it is close right now), they will renegotiate the costs so that they are similar to yours.

I do not yet have that luxury. But I may just stop the entire process becuase of the insane cost. I think about that every day.

My family can use the money to put their kids through college. I am willing to be a lab rat so that I don't continue to waste so much money...and it is a waste, regardless of the efficacy of Tysabri. The cost is so out of line with what people can afford that it is just insane.

Again, thanks for the PM. Just add 2K to those numbers and they will look like mine.

-Vic

Sheena,

I am sorry to hear that your infusion was cancelled. I think perhaps the infusion staff was just making sure that you were good to go after you have been so
sick lately, and that is not a bad thing. It means they are being very careful, as they should be with every patient.

As far as the swelling in your leg, that would be your primary care doctor's domain, not the neurologist's. You should see your primary care doctor and find out what is going on as it could be something entirely unrelated to your Tysabri treatment. There are many things that can cause swelling and circulatory problems and you should get it checked since it's lasted as long as it has!

Let us know how it goes!! :hug:

Hotfoot! :Wave-Hello:

Welcome to Neurotalk, and especially to the Tysabri thread! You'll find a lot of support here. I find the whole infusion process very easy and hope it's the same for you.

Let us know how it goes for you!!


The wholesale cost of Tysabri per vial is $2184.62 . That comes out to 28,400.00 per year (13 infusions)

http://www.elan.com/Products/united_states/tysabri_pricing.asp


That is the WHOLESALE price to the pharmacy. What the pharmacy charges to the infusion center or doctor and what the infusion center or doctor charges to the patient is a whole different ballgame! Everyone takes their profit and in most cases, it's a LOT.

I received an EOB from my insurance company last month for January
(the first time two infusions have fallen in the same month) and the total bill was $10,000.00 +. I got another a day later and the insurance had paid over $9400.00 of that bill. The hospital ate the rest. I called and asked patient accounting to send me a breakdown of the bill listed by charge for every item. I haven't received it yet, but when I do I will post it here.

I'd heard that there was a price hike in the wholesale cost but the website doesn't reflect what I heard or the figure I have in hand. If I can verify the price hike that supposedly went into effect I will post that too.

Hope everyone's doing well out there!!:)

Edit:See end of post.

I just got the new statement from the insurance company.

Good timing indeed...

1) BC/BS is being billed $3,600 for the Tysabri per infusion (I have to pay $2,000 on top of that), which means that the cost is $5,600 per dose. The infusion center is really jacking up the prices.

2) The Infusion Center has also billed me and additional monthly amount of $957

3) My BC/BS premium just went to $1,050/mo

Therefore, the total monthly cost for everything is $4,007

The annual cost at this rate will now be $48,084

In one month the cost went up by $3,084

I guess this bill came at the appropriate time to add to this discussion.
Tysabri may be ended soon...and that really does not bother me, as the well-being of my neices and nephews outweighs my MS. Heck, each year of Tysabri is equal to the cost of a four-year degree in a California State University. It makes the decision even easier now that I just typed that last sentence.

...And oddly enough, I am not even bitter about all of this.

-Vic

Hi again Vic,

Even though you are not bitter it makes me sad that in this country you would have to choose between healthcare for yourself and education for your family members. It is shocking to realize that one year of Tysabri = the cost of a degree from the Cal. State system. I would add too that your cost of one year of Tysabri = one year of salary for a starting assistant professor in my field. And I consider myself lucky to have a job with excellent insurance. How anyone can afford medical costs these days is beyond me. I admire and respect your concern for your nieces' and nephews' education. An education is priceless -- and so is your health. Wish you didn't have to choose.

Take care and enjoy that perfect Calif. weather!

Natalie

Thanks, Natalie.

I will find a way to resolve this issue.

Maybe I will become a lab rat for Revimmune or get involved with an MS trial that looks good.

Either way, I think that there are still choices in dealing with my MS and there is no sane reason to keep spending so much on a medication. Maybe I will claim poverty and get it for free.:winky:

-Vic

I've never heard of Revimmune until now. I just found this article from a year ago.

http://www.medicalnewstoday.com/articles/64250.php

They describe it as a drug that "reboots the immune system."

Very trippy!

Natalie,

Here is an article on that medication:

http://www.hopkinsmedicine.org/hmn/W08/feature1.cfm

-Vic

The wholesale price for Tysabri of $28,400.00 is correct.

1 year / 13 infusions / 1 every 28 days / $2184.61 per vial / set in 2006 when Tysabri was returned to market.

I was associating the price increase with the approval for Crohn's disease.

My bad and my apologies. I've been in this fight a long time and the facts run together sometimes! ;) Please don't ask me if I can remember the price prior to return!! :p

(P.S. NICE GRAPHS AGAIN VIC!!!) :)