While I am not on Ty at the moment, I know exactly what u are talking about. Ty weakens your immune system as do all other approved MS meds. I can't say if u had a reaction to TY or if it weaken you (as in my case). I did not have many headaches, but was ill 80 to 90% of the time I was on Ty. About 1-2 visits a mo to the GP for drugs. For me it was worth it. Quality of life was low, but my MS become stable. The illness was kind of like a 2yr old who caught everything. I'm sever MS so I continued the med. I understand your decision to leave and wish you well. Just wanted u to know there are others out there somewhat like you.XOXO

:sad-dollar:

Tysabri price increase.

Effective 12/23/08 there is a 3% increase in wholesale price from 2295.16 to 2364.01.

Not sure how that compares to the wholesale price increases on the CRABs, since they have all gone up in price, maybe someone has the figures for the other drugs for comparison.

Hi All

Hope this finds everyone well. I had my third Ty infusion yesterday and so far I am pleased. I did my first 2 at home in NJ and my third while on vacation in south Fl.

I was suppose to have been done lat Wed but someone gave this site wrong info and they called and cancelled saying my insurance does not cover Ty. That was finally starightned out only hours before my infusion time.

I am not saying one place is bettr than the other I am just comenting on how diffrent they each run. In Nj I must be seen by DR each time here come early any time no need to see Dr and he does not draw blood each time after the first visit. He was very nice and that suits me cause appointment was 1 told to come 1230 to fill out papers and I left 450. I was alone in infusion room from 330. He cant leave till last person is done infusing. In NJ they have about 30 seats people come and go all day. They had 10 seats busy day is 14 total. They did say this is the smallest of their 3 sites but still only do about 25 a day in their other sites. Nurse took bp before I saw Dr in NJ they also take it while on Ty and when finished.
take care
laurie f

Glad to hear it went well Laurie!

Was it hard to set up the infusion in FL for that one infusion?

I would love to be able to do that when I go somewhere on vacation! I've been held back more than once due to my infusions falling inside of a time when I planned a vacation out of state! At this point I just plan around infusion, but it would be nice to be able to do that instead!

Riverwild

The Touch program was very helpful in setting up the Fl infusion. We did run into a problem and it was delayed by 5 days because the Fl facility waited till the morninng of the infusion to check my insurance. It was Wed and they were closed Thurs and Fri. Insurance company gave them wrong place to call but with TTouch programs help it was resolveed. I will know in the future to call ahead. You must give them 3 weeks notice.

Good luck
laurie f

#22 Down! :yahoo:

Nothing to report, just a usual infusion, everything was on schedule and over within the usual time. :cool:

This will be my second month of two infusions, the first was last January. I can't wait to see what the insurance company and the hospital do with the billing this time! Last year, I got the $10,000.00+ bill! It disappeared before I could ask questions. It WAS funny when I called up and the billing office said "Oh, that was just a glitch!" I laughed and said "Good thing cause I wasn't paying it. We'd have been filling out the poverty paperwork!" :p

No itchies today!:D

Life is good! Happy New Year! :)

How much are your infusions? I don't understand why the costs are so different across the nation.

My infusion costs are $2703. Only $150 of that cost is for the facility that gives the infusion. If you get a bill for $10,000 for 2 infusions, that is making your infusion $5,000. I can see maybe $1,000 difference, but something seems funny to have them be so varied!

I know Vic's were expensive, but he lived in CA, and everything seems to be more there. But Maine is a potato state like Idaho. You'd think we'd be similar :o!

I heard through the grapevine that infusions are ~$10,000 at Rush-Presbyterian in Chicago. I think it all depends where you go. My neuro's office charges a nominal fee compared to most.

The bill I saw back in Jan. 2007 was for 10K+

I have never seen a bill before that time.

I have an old style insurance plan. The plan cannot be dropped due to a clause in the contract between my company and the insurance co (BCBS)

My policy is under contract with a clause that as long as any original plan members remain in the plan, it cannot be cancelled. I may be the last member, i don't know. That is confidential information. All I know is what I pay per week for premium and what they are paying out every year to cover me.

Someday I am sure they will make me enter the real world of how people are getting bent over and screwed ( watch and see if THAT prints!:) ) but for now, I have a chance to save and pray and thank whatever made
me sign up for it back in 1990!

Thanks for the sense of humor!!!

It may be adjusted way down with your insurance. Still, it doesn't seem right that places should charge so much. I don't believe in national health care, but I do think some reform needs to take place with those kind of differences.

My NJ facility bills my insurance $5200 per infusion. We can check on the computer but they were paid 2300 and $175.

I am interested in seeing how much the Fl facility puts in for. I paid $25 out of pocket.

Good luck to all
laurie f

My insurance pays the infusion center $7500.00 +-
The infusion center bills the insurance co. $10,000.00 +-
$7500.00 of that bill is for the drug and the rest is for the infusion services.
Ins. Co. has their payment broken down at 6500.00 for the drug and $1000.00+- for infusion.

It's still too much for the drug in my book! I spoke with a rep from the ins. co. and asked WHY they are paying that much when they could just order the drug and ship it to the infusion center for a MUCH lower price. She couldn't understand why it bothered me so much when I wasn't paying the bill, they were. I reminded them of my lifetime cap and told her to do the math and then add in MRIs and regular medical visits and tests.

sigh...

Regardless of who is paying the bill, guess who really pays in the long run?....the customer, of course!! Insurance companies are in business to make money and they get this money from the premiums that the customer has to pay.

Harry

I get my infusion in my doctor's office. They have what they call an "infusion clinic" which is basically a room with 4 chairs staffed by one nurse. They bill my insurance company $498 per infusion. This seems remarkably low. I pay a $25 copay when I go in as I guess it is considered a doctor's "visit."

I get my Tysabri through my prescription drug plan -- the specialty pharmacy sends the drug to the doctor's office. So the wholesale cost of the drug is $2,364.01 which is billed to the insurance company. But I pay $37.50 of this amount under my prescription drug plan.

Overall the cost to the insurance company is $2,862 per month which includes infusion plus drug (minus $62.50 out of my pocket). I feel incredibly lucky. My job gives me amazing health insurance. I'm sure the lower total cost billed to the insurance company partly has to do with the fact that I live in a big city with multiple neurology offices/clinics that do procedures etc. in their practices. Maybe this cuts the cost down?? If I had to go to a regular infusion clinic I'm sure they would charge way more for the infusion procedure than my doctor's office AND I would have to pay 20% of the total cost (plus meeting a deductible), rather than a co-pay , since it would be billed as a medical procedure. Anyhow, the cost of this drug (and having it given to you) is outrageous regardless.

Our Rx provider charges the insurance company $2341.17 for 28 day Rx Tysabri.
The insurance carrier pays for the entire amount.

Our Neurologist's infusion center charges $578.00 for the infusion and
the insurance company pays $201.96 which he accepts as payment in full
as a 'participating' doctor. We have zero 'out of pocket' expense.

We don't understand the disparity.
How could a Maine or California Neurologist/Infusion Center charge so much
for the exact same same treatment?

Supply & demand?
Lack of Neuros and infusion centers?
Gouging?
The Governator?

It just doesn't make any sense and it just doesn't seem fair.

I'm in the Los Angeles area...

I had two ty infusions...each time my insurance was billed $2741 for the entire thing. $2550 for the actual drug and the remaining 200 or so on medical/office part of the visit. The insurance company has a negotiated fee of $2268 for the actual med and the office stuff around $180. My insurance paid $1935 and the remainder $512 was for me to pay - as I have a 20% copay.

I still don't understand what was going on with Victor and it makes NO sense to me. Basically he'd have paid less paying completely out of pocket and going to my place...since the flat bill before insurance adjustment was only $2700! I'm still baffled.

~Keri

I truley don't understand the diffrences in the cost of the drug. The infusion centers cost don't seem that great a diffrence except maybe Riverwild. I wonder if TOUCH would provide us with the info concerning actuall drug cost. We will keep checking the computer to see what the Fl infusion site charges in comparison to my NJ site. I will let you all know when it comes up.

Thanks to all who provided the info.

Take care
laurie f

Costs can vary from city to city. Even for a Dr's office.

My old dermotoligist moved to a neighboring town, because the property taxes were 1/2. His rent on a buillding the same size was almost 1/2. The "new" town where he moved also gave all new business tax credits.

Those type of costs can will greatly effect how much it costs to run an office or clinic. Even comparing wages from state to state. Those type of things.

It ends up comparing apples to cauliflower. :wink:

Don't forget the difference in types of insurance, whether it is a self pay or employer sponsored, the state you live in and what their insurance field looks like, etc, etc, etc.

We tried to do a comparative analysis and ran into the problem that you truly CANNOT compare costs unless everyone is going to the same infusion center in the same state at the same time! Even then the variable of insurance plans skewed the data so badly that it couldn't be compared. Everyone has a different type of insurance plan and they all cover costs differently, as they all negotiate different levels of payment. People who do not have insurance and use state medicaid plans all have different levels of coverage and my brain isn't big enough to try to figure it all out!

While indeed there are many different kinds of coverage under a multitude of policies, there is one supposed constant...the wholesale cost of Tysabri.

Regardless of what the policy may be, there is a charge by the infusion center for both the drug and the cost of the infusion. It is here where there are HUGE differences in the final total. I have read the cost can be anywhere from about $ 2800 to $10,000 for one infusion and that is disturbing. Yes, one can account for different center cost structures but not to the extent of that kind of variance. Some centers are making a lot of money out of Tysabri infusions and regardless of their possible difference in cost structure, how can anyone explain that level of difference?

Harry

It's the same for everything.

I can get a flu shot at a local pharmacy for $8-$10. Sometimes less.

I can go to a local dr and he charges an office visit and $75. So same shot cost $225. If I have insurance, then just the co-pay.

We don't have Universal Health Care. Prices and fees will vary. By a little or a lot.

It is not just this drug, so I don't really see the point on on what I consider picking on it.:confused:

Have you ever priced Botox?

thanks Harry
I have to agree with you. I understand we have diffrent insurances but that would be up to the insurance how much they pay. That should not reflect the amount asked for for the drug at such a big diffrence. The wholesale cost of the drug should be a constant. For someone like Riverwild that has a lifetime cap this seems quite unfair. My billable rate is almost half hers.

I understand Drs visits vary and I did not see as much a diffrence in infusion center rates as I did with the cost of the drug.

Riverwild I am just curious do you go to a Drs office or an infusion center cxconnected to a hospital? I go in both cases to private oncologists. The fl site has not yet posted the amount requested but I am sure the insurance company will pay the same in both. My copay remains $25 where ever I do it.
Good luck to all
laurie f

Do you think it also might depend on how big the size of the center? How many infussions they do? They might get different prices depending on the size of the order.

Curious monkey called our family friend who is also our family dr. :) His cost of flu vaccine is higher than places that set up clinics. He said he does less than a dozen per year.

Just a thought.

7 down
 

I had my seventh Tysabri infusion yesterday. :) There is a delay in my post since I came home at 5 pm and crashed from a low grade fever, exhaustion and a headache. Sometimes I feel like I've been run over by a truck after the infusion! But 24 hours later I am feeling good to go. I also found out I am negative for Ty. antibodies so that is a relief. They did the test at the 3rd month mark but lost it and never bothered to tell me. :mad: I assumed since I did not hear from them I was okay. Anyhow, they ran it again in Dec. after the 6th infusion and of course I sat around and worried because of the fevers-- but again, it was negative.

PS: Biogen just sent me a new drug insert. They've added something new that wasn't there before. It says that slightly low hemoglobin may be a result of the drug. I wonder if this is why I've been showing slight anemia on occasional bloodwork tests?

I really don't think we are "picking" on Tysabri. We are simply discussing why there are such huge differences in cost for MS patients obtaining an infusion. Comparing the cost of a flu shot at a pharmacy vs at a doc's office is a far cry from why some patients are charged $ 3000 for an infusion and some $ 7000!

Harry

River,

I agree that types of insurance do make a difference - however, the #s I listed were the raw numbers that I was billed....what someone would be billed even without insurance...then my insurance adjusted it to their approved/contracted rate, and I paid my share (which was 20%).

What I was saying that Victor could have come to my center (90 mins away) and paid a fraction of what he was paying. That is what I don't get - especially since I live in the "city" whereas where he is, is, uh, uh...well, it is not LA.

I still remain curious :confused: as to why V paid SO much and he had insurance (albeit, it doesn't sound like good insurance!).

~Keri

There are probably several different factors (some of which have been mentioned already) that could contribute to the variance in charges, but my concerns would be:

- the lifetime cap for treatment coverage (mine is one million, which wouldn’t take long to reach at 100K+ per year).
- the cost to the “plan”, which HAS to affect premiums for EVERYONE.
- that we (PwMS) could be pricing ourselves out of coverage (for future patients).

Once these insurance companies “catch on” the PwMS are a HUGE financial burden, I suspect they will eventually start writing in caveats to their plans that exclude PwMS, or at a minimum double/triple premiums for patients that are dx with it. I know that sounds extreme, but they do it for other categories already, so why not us?

A 400% difference is obviously not as major for an inexpensive treatment, as it is when we are dealing in the 10’s of thousands per year.

I think I understand that patients are limited in that they may have to go to a center within their plan, but I can’t see why the insurance carrier wouldn’t “agree” to an “exception” if it is going to save them up to $60K a year? :confused:

Cherie

I use an oncology infusion center connected to a hospital.

The debate about the cost also has to take into account that some people's Tysabri is covered under their prescription plan. Some people have it covered under major medical with the infusion center supplying the drug. Some physicians supply the drug.

The cost of the drug when it is associated with a middleman is a doubling in cost. There are only so many pharmacies that you or the infusion center can order Tysabri from. So when the insurance prescription plan orders from the supplier, they pass some cost on to your plan. When the infusion center orders through THEIR supplier who orders through the central pharmacy that is TWO adds to the cost. They pass that cost on to you or your insurance plan. If the doctor orders the drug through his supplier who orders it through their supplier who orders it through the central pharmacy, and supplies it to the infusion center...

argh...

Some Tysabri news
 

Biogen says they will begin posting weekly to their site on any new cases of PML. Thomas Gryta of DJ reported it today. I do not have a link but I am sure it is out there since Biogen had a conference today. When I have a link I will edit this and post the link, or someone else can add it in here.
----------------

http://archneur.ama-assn.org/cgi/con...act/65/12/1655

Juvenile MS treatment study abstract. This appears to require a subscription. I am SURE that someone out there with lots of time can find the full abstract if it is out there and available.:cool:

I have the full abstract/study but since it is a paid subscription I cannot cut and paste it here.

In a nutshell, three case studies of juveniles with aggressive MS who are under treatment with natalizumab and their doses and the success of the treatment, along with length of treatment and previous treatment. Good stuff. All three doing well. QOL up, no relapses, symptom improvement seen, stabilization in all three cases as in no clinical disease progression seen. Dose modified for size. Duration of treatment- 24 months, 16 months, 15 months.

Wow! Thanks for the explanation.

Where given a choice, I would still ask why not CHOOSE the cheapest option? :confused:

Cherie

Hi all. My infusion center charges my insurance company $13,000 :eek: per infusion. I think it's such a rip off, even though I don't pay anywhere near that amount--my husband and I own our own business, so we buy the insurance for our employees, which means that our group insurance costs are going to skyrocket. I wasn't able to get approved for a cheaper site.

Katty

According to who? Your insurance carrier?

If insurance is making that decision, couldn't you appeal it? I am constantly appealing my carriers stupid decisions, and winning. :)

Are there limitations to which hospitals a person can go to too? I don't know the US system cause I am in Canada ... but was of the impression that a person could at least choose ANY hospital (for the infusion). :confused:

I just think that if there is a will, there's a way . . . MOST times anyway.

Cherie

I tried to appeal it, but the appeals group couldn't understand the problem--they were paying for the treatment, what did I care how much it cost the insurance company? I live in a town that has one hospital and no separate infusion center so my options are limited. I will eventually try again, to get the infusion done at the neuro's office. I tried this before but the insurance wouldn't approve it even though it would have saved them a boat load of money.:confused:

Also, from what I've been told, you have to get the infusion done at a place that's in some way connected to your neuro. Has anyone heard different?

Katty

The center also has to be TOUCH approved. I live in a town of about 60,000 and we have 3 places to get Tysabri, the hospital, an oncology center, and a home IV pharma place. I go to the home IV pharma place. My primary insurance will not pay for me to go to the hospital. They told me that over the phone.

Where I'm going to run into problems, and it isn't a problem for me, but my infusion center. My primary insurance carrier pays a set amount. My secondary insurance has a deal with the center for a reduced amount. But it is reduced for the reasonable and customary charge, not the set amount of my primary. So they end up losing money on me until my max out of pocket is met from my primary.

The center is going to try and bill different. I hope it works. I don't think they are unreasonable, so I hate to see them lose money!

That's incredible, Katty! :rolleyes:

I'm glad you have a vested interest in trying to rectify this, and I'll be curious to hear if you ever do.

It almost seems risky to rock the boat though, when you are dealing with corporations where common sense doesn't prevail. :cool:

Cherie

Addition for more information on pharmacies and Tysabri:

" TYSABRI became commercially available in the US in July 2006. Under the TOUCH Prescribing Program, only prescribers, infusion centers, and pharmacies associated with infusion centers registered in the TOUCH program are able to prescribe, infuse or distribute TYSABRI. Elan has contracted with a single distributor, ICS, a division of AmerisourceBergen Specialty Group, and 12 specialty pharmacies: Caremark, CuraScript, PharmaCare, PrecisionRx Specialty Solutions, Medmark, BioScrip, McKesson Specialty, Option Care, Cigna Tel-Drug Specialty Pharmacy, Aetna Specialty Pharmacy, Prescription Solutions, and Accredo NovaFactor. ICS and the 12 specialty pharmacies have been trained on the TOUCH Prescribing Program and are obligated to follow the requirements of the program in order to purchase and distribute TYSABRI to authorized infusion sites and central pharmacies."

http://prohostbiotech.com/stocks_det...ck_id=elan-eln

Howdy Howdy.

Just an FYI, this thread is getting close to the 1000 post mark. AWESOME!

Someone let me know when you are at a good point to start #2. Both will be in the stickies.

:grouphug:

Curious

How time flies when we're having fun! :p

Let's change at 1000! Nice round number and it sounds lucky! :)

katty

I dont think the dr has to have an association with the infusing dr. Although mine spoke with my initial dr he does not have any other of his patients and they dont work out of the same hospital. Ibelieve he said they have never met. They are not located in the same town.

I have had 2 infusions in NJ and 1 so far in Fl. TOUCH program helped me get into the one in fl. You can xall then abd see if they can help.

Good luck

laurief

NO ONE post when the count is 1000. PM me to notify me. :D