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-   -   Starting Tysabri Tomorrow (https://www.neurotalk.org/multiple-sclerosis/26963-starting-tysabri-tomorrow.html)

tovaxin_lab_rat 12-15-2007 09:38 PM

Quote:

Originally Posted by katty (Post 177117)
Hi,
:eek:
It's been a while since I last posted. I'm doing very well. Cognitively and physically improving. Energy level is pretty good.

I had a shock the other day. I received the first of the cost breakdowns that my insurance company gets from the hospital. For each treatment of Tysabri, the hospital is charging $13,000. yes, that's thirteen with three big o's on the end. That's almost $160,000 dollars a year yor me to get the treatment.

Thought you might need to know this. Im still gasping and coughing. Yes my insurance company is paying for it, but if I ever lose my insurance I'm going to be in huge trouble--even more so because of the potential for disease rebound on this drug. With MS you never know when you might not be able to work anymore--leading to loss of insurance--eading to loss of treatment--leading to loss of all gains and a three to five times rebound in the disease.

this cost factor is big. Check with your infusion provider before starting the drug. There is only one in my county.

Katty

Katty

I personally think your hospital/infusion center is way overcharging for your Tysabri infusions! It does NOT cost that much. If I were in your shoes, and I have been, I would ask your insurance company to do an audit. The cost is about half that...

I am glad you are feeling better. ;)

(I do have a lot of background regarding this issue!).

Riverwild 12-16-2007 08:32 AM

Katty,

I wasn't getting any benefit explanations from my insurance company so I went to accounting at my hospital and asked about the charges.

Fortunately for me, my hospital infusion center ( also the only game in my county) is eating what my ins. co. doesn't cover. I was appalled to hear that the charges were over 5 K per month. The accountant broke it down for me and the cost of the drug was around 2500.00 and the rest was for the infusion center.

Glad to hear things are going well with you!! Please keep us posted!

tovaxin_lab_rat 12-16-2007 01:49 PM

Quote:

Originally Posted by Riverwild (Post 177201)
Katty,

I wasn't getting any benefit explanations from my insurance company so I went to accounting at my hospital and asked about the charges.

Fortunately for me, my hospital infusion center ( also the only game in my county) is eating what my ins. co. doesn't cover. I was appalled to hear that the charges were over 5 K per month. The accountant broke it down for me and the cost of the drug was around 2500.00 and the rest was for the infusion center.

Glad to hear things are going well with you!! Please keep us posted!

Hey RW --- Don't you think that $5k is more the norm than $13k? I know that through the research that I have done for the presentation that I have given, that $2500 is pretty much the cost across the board for the drug, but the additional $11k for the infusion???? Is she buying a wing for the hospital??? My goodness!!!!

Riverwild 12-16-2007 01:53 PM

Quote:

Originally Posted by Av8rgirl (Post 177273)
Hey RW --- Don't you think that $5k is more the norm than $13k? I know that through the research that I have done for the presentation that I have given, that $2500 is pretty much the cost across the board for the drug, but the additional $11k for the infusion???? Is she buying a wing for the hospital??? My goodness!!!!

I think it is WAY high. I believe she must be paying a nurse her yearly salary for doing infusions! Course if it was me, I would be gathering information and links and inundating the ins co with emails!

I do recall our lil Mary telling us that she had a rather high bill for her infusion that her insurance was paying too. But hers was for the big city Boston hospital.

Where are you located Katty?

ewizabeth 12-16-2007 05:01 PM

These are ridiculous prices! My neuro's office charges about $500 for the infusion, my meds are from my specialty pharmacy. He said that after all the administrative costs of the infusions, it's really not even profitable for them to do it. :(

katty 12-16-2007 06:24 PM

The cost!
 
Hi,

I called the insurance company and requested an audit. They were not interested. I called the hospital and was told that I was lucky there was anywhere to go for this. I was also told they charge $20 for an aspirin.

I live in Santa Cruz, California. The costs are high here, but I know from the Elan website that the drug cost is less than $2500. The hospital charges $12,000 for that. They tell me this is because they have to cover the costs of other stuff they do at the hospital. I think that stinks.

I know someone who had a baby recently. It was a normal delivery. The hospital charged them $30,000. For now I'm going to calm down and be happy the insurance is willing to pay this outrageous bill.

Maybe I can convince the Neurologist to start doing the infusions at his office.

Katty

tovaxin_lab_rat 12-16-2007 08:43 PM

Quote:

Originally Posted by katty (Post 177336)
Hi,

I called the insurance company and requested an audit. They were not interested. I called the hospital and was told that I was lucky there was anywhere to go for this. I was also told they charge $20 for an aspirin.

I live in Santa Cruz, California. The costs are high here, but I know from the Elan website that the drug cost is less than $2500. The hospital charges $12,000 for that. They tell me this is because they have to cover the costs of other stuff they do at the hospital. I think that stinks.

I know someone who had a baby recently. It was a normal delivery. The hospital charged them $30,000. For now I'm going to calm down and be happy the insurance is willing to pay this outrageous bill.

Maybe I can convince the Neurologist to start doing the infusions at his office.

Katty

Katty

It's not a matter of whether or not you can convince the neuro to infuse you at his office, he has to be TOUCH certified to infuse AT his office. There is a very detailed TOUCH protocol training and certification process that his office must go through in order to become an infusion center. And he has to have a TOUCH certified and trained RN on duty, not just someone in the office. That's why a lot of neuro's don't have infusion centers in their offices.

Biogen (not Elan) is trying to get a handle on these cost over runs because it is hurting the overall big picture for patients who really need this drug not getting it because some insurance companies (like mine) are refusing to put it on their formulary.

Don't misunderstand me, I am no long eligible for Tysabri because I am in a clinical trial for Tovaxin. I got tired of fighting my insurance company. I did testify to bring Ty back on the market and was on an FDA RiskMAP panel representing the MS Community discussing the PROs and CONs of the TOUCH protocol for Tysabri.

There are other areas of the country that are a lot more expensive than Santa Cruz and have only one or two patients being infused. As an example: here in Idaho, one place I know has only one patient that has a travelling infusion center and they pay no where near what you are paying. If your insurance company isn't interested in performing an audit...that would make me wonder why! Oh well. :confused:

As you said, you are lucky your insurance company is willing to pay these outrageous costs! I am also happy that Tysabri is working for you.

Keep us posted on your progress! I hope you continue to improve! ;)

Riverwild 12-17-2007 09:15 AM

Quote:

Originally Posted by katty (Post 177336)
Hi,

I called the insurance company and requested an audit. They were not interested. I called the hospital and was told that I was lucky there was anywhere to go for this. I was also told they charge $20 for an aspirin.

I live in Santa Cruz, California. The costs are high here, but I know from the Elan website that the drug cost is less than $2500. The hospital charges $12,000 for that. They tell me this is because they have to cover the costs of other stuff they do at the hospital. I think that stinks.

I know someone who had a baby recently. It was a normal delivery. The hospital charged them $30,000. For now I'm going to calm down and be happy the insurance is willing to pay this outrageous bill.

Maybe I can convince the Neurologist to start doing the infusions at his office.

Katty

Thanks for telling us the details. I guess when they say people with insurance pay for people with no insurance, they aren't kidding! Your insurance company is paying for you and someone else!

Either way? Happy to hear you are still on Tysabri and they ARE paying for it!!:)

katty 12-18-2007 12:35 AM

ahh! Cost relief!
 
:D
I guess my insurance company decided to check into matters after all. I got my second insurance statement today and they are only allowing about $5000 of the costs. The rest the hospital will have to eat.

The Tysabri really works. Too bad it's so hard for some people to get. I actually select the health insurance for my company so I made sure they cover Ty. There is only one doctor in the area who is prescribing the drug.

CHERYL: Please tell us how the Tovaxin trial is going. I hope it's as good as it sounds. Why don't you open a Tovaxin thread and keep us posted?

Katty

tovaxin_lab_rat 12-18-2007 11:17 AM

Quote:

Originally Posted by katty (Post 177718)
:D
I guess my insurance company decided to check into matters after all. I got my second insurance statement today and they are only allowing about $5000 of the costs. The rest the hospital will have to eat.

The Tysabri really works. Too bad it's so hard for some people to get. I actually select the health insurance for my company so I made sure they cover Ty. There is only one doctor in the area who is prescribing the drug.

CHERYL: Please tell us how the Tovaxin trial is going. I hope it's as good as it sounds. Why don't you open a Tovaxin thread and keep us posted?

Katty

I did, but no one seemed interested and it is probably back on page 100 by now! ;) I will post something later...gotta go build gingerbread houses with the neighbor's kids right now!

I am glad your insurance company did take an interest!!! Good for them! :D


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