This Is MS Multiple Sclerosis Knowledge & Support Community

I am going for my 2nd infusion tomorrow - which my neuro is requiring a $2500 payment for until insurance companies start paying. I don't know if anyone has gotten reimbursed yet for Tysabri - a med that is FDA approved! Another 2500 on the credit card, thanks oxford liberty.

I'm keeping my fingers crossed and will report back when I have more info. I haven’t had any major attacks since starting last month, so I am hoping this is par for the course.

Gr8ful

What was your disability before and now? Any changes? There are many of us that are anxious to hear any experiences with Tysabri. The process they are making all of us go through sure is different than when it was first approved.

gr8ful wrote:I am going for my 2nd infusion tomorrow - which my neuro is requiring a $2500 payment for until insurance companies start paying. I don't know if anyone has gotten reimbursed yet for Tysabri - a med that is FDA approved! Another 2500 on the credit card, thanks oxford liberty.

That cost would be at a lower level of what the monthly infusions will likely be. The wholesale cost of the drug is about $ 2200.00 so your doc isn't adding on as much as what most will. Very expensive treatment!

Harry

Still waiting for statement frm Medicare for 8/9 infusion of Tysabri. I will post the site when it comes...

Lee

I have Coventry Insurance and have gotten approval for Tysabri (after appealing first denial). Medication has been shipped and should be available for my 1st infusion tomorrow or Monday. Wish me luck

I promised I would say when I got my Medicare statement for my 8/9 infusion of Tysabri. It came Wednesday. To say it was odd is an understatement

My Neuro billed the Ty at $4500 and accepted Medicare's amt of $7 (yes, $7) of which they pd 80% or approx $6. Second line item is infusion charge of $400, etc etc so the bottom line is that my neuro charged $4991 and rec'd approx $250. Medicare has approved Tysabri and is paying albeit an amt that leaves me shaking my head from more than just tremors...

Lastly, although I am thrilled for all the success out there with Tysabri my own experience leaves me thinking my heart's going to break. Yes, I agree with Harry that Tysabri was "rushed" to market but I also think that if I could take it I would. I'm not gonna read this for a while. Ian, I think you have been unbelievably helpful to me on the "Drug Pipeline" but I think your ban of Harry is wrong.

My Neuro billed the Ty at $4500 and accepted Medicare's amt of $7 (yes, $7) of which they pd 80% or approx $6. Second line item is infusion charge of $400, etc etc so the bottom line is that my neuro charged $4991 and rec'd approx $250. Medicare has approved Tysabri and is paying albeit an amt that leaves me shaking my head from more than just tremors.

Hmmm...that's certainly a hefty price your doc charged you. The wholesale cost of Tysabri is about $2300 so somone is making a nice little profit! At $4991 an infusion, that's $ 64,883 for a year's treatment

Ian,you have been unbelievably helpful to me on the "Drug Pipeline" but I think your ban of Harry is wrong.

I appreciate your comment but despite what Ian has said, I am not "banned" from the Forum. I'm thinking that his last message to me was frustration, boiled over.

Harry

Harry,
With Medicare the number requested shows little or no relationship to what the dr receives. That's the point...she rec'd $250. I agree it makes no sense but that's how the so-called system works.

Lee

leeeeeway wrote:Harry,
With Medicare the number requested shows little or no relationship to what the dr receives. That's the point...she rec'd $250. I agree it makes no sense but that's how the so-called system works.

Lee

OK....thanks for clarifying that for me. Still have a hard time understanding how a medication costs over $64,000 a year

Harry

HarryZ wrote:

Still have a hard time understanding how a medication costs over $64,000 a year

Would $50,000 a year make it less hard for you? I've got a little put away in a bank account that I no longer need.

Ieeeeeeeeeeeeway

Would $50,000 a year make it less hard for you? I've got a little put away in a bank account that I no longer need.

The way you are going these days, you'll likely need every dollar you've got.

Dear Canadian man,

With my accountant's hat on I would guess that the cost of this drug reflects:

The costs of developing the drug (sometimes over decades); the costs of running trials (tens of millions); the cost of building new factories etc; the cost of production; marketing costs; distribution costs; overheads (the company has personnel departments, finance departments); lighting; heating; electricity; accountants; lawyers; insurance; the costs of other treatments which did not make it to market (these have to be recouped from drugs which do make it to market); the cost of servicing loans; the need to pay dividends to the shareholders who have invested in the company. The company then has to assess how long the drug is likely to be on the market and how many people are going to use it. The company also has to take a view on the price the market will bear.

Several cancer drugs have come to market in the UK costing £50,000 a year. They cost this amount because of the reasons set out above.

In the UK I pay £4 for a gallon of petrol (gas) which has come all the way from the middle east, shipped to the UK, refined, distributed to filling stations. For the same £4 I can buy a pint of beer made ten miles away from water and hops! If mysteries like this weren't around life would be boring. But don't have sleepless nights over the cost of Tysabri. There are bigger things to worry about like - if the world stopped spinning would we all fall off? Or have the Northern Koreans got a nuclaer warhead?

When you post a pro-Tysabri story, I'll fly you to Northen Ireland and buy you a pint of Guinness and we can pop into Elan and see if they can give you a free shot of Ty for old times sake. I know $64,000 seems a lot but they probably do half price Mondays for pensioners!

Dear UK Man,

Your reasons for the high cost of Tysabri sound as though they have come directly from the Biogen Marketing and Sales department. Despite these very well known development costs, pharmaceutical companies still manage to make profits in the millions of dollars on their products despite also spending huge mounts on advertising and "special perks" for their customers. Of course, raising the wholesale cost of Tysabri by 22% just before it was re-approved was just another one of those business decisions to make up for the additional cost of the TOUCH program required by the FDA.

Several cancer drugs have come to market in the UK costing £50,000 a year. They cost this amount because of the reasons set out above.

One of the big differences between cancer and MS drugs is that cancer drugs are usually required to stop the disease and they either work or don't work. MS drugs, up until now anyway, are required for life so the costs continue to mount year after year.

In the UK I pay £4 for a gallon of petrol (gas) which has come all the way from the middle east, shipped to the UK, refined, distributed to filling stations. For the same £4 I can buy a pint of beer made ten miles away from water and hops!

The next time you have to get "free" medical treatment in the UK, think about where the tax money used to pay for this comes from!

When you post a pro-Tysabri story, I'll fly you to Northen Ireland and buy you a pint of Guinness and we can pop into Elan and see if they can give you a free shot of Ty for old times sake. I know $64,000 seems a lot but they probably do half price Mondays for pensioners!

I'll respectfully pass on the free Ty shot....Elan would probably have to raise the price again, stating that they had to pay for the "freebie" somehow

Harry

Sir,

Your reasons for the high cost of Tysabri sound as though they have come directly from the Biogen Marketing and Sales department.

I have never been near a drugs company annual report and accounts or have seen anything from Biogen. This is basic accounting stuff - and could be applied to car manufacturing, hamburgers or defence equipment. Some time ago I posted the UK MS Society's Research Matters - in this publication is a figure of £350 million for bringing a new drug to market. We cannot possibly look at the price of a drug and claim it is expensive or cheap. As commercial companies, drugs companies have to make a profit so they can pay dividends to their shareholders - I don't think any of us could claim to know what a fair profit is - 5% return on investment, 10% return on investment. But at the very least, we need these companies to break-even, otherwise they might not invest in research for the future.

In layman's terms, Tysabri is twice as good as the CRABs at reducing relapses (67% v 30%), so one could argue that the price should be twice as much as the CRABs- who knows? Biogen / Elan are likely to have a fairly short run with this drug - given that by 2010 there will be oral treatments on the market. So they have got four years to recoup the £350 million investment and their on-going costs. They know they are under pressure which is why they are buying up several promising drugs. If, for example, Rituximab is shown to be effective (in terms of reducing relapse rates and disease progression), this will be a direct competitor to Tysabri (and part owned by Biogen). Sufferers might switch to Rituximab given the lower number of infusions required each year and the unknown risks with Tysabri (Rituximab brings risks, but has a known safety profile). So it might be that Tysabri never recoups the investment made by Elan and Biogen.

Of couse the real value of these drugs is to the sufferer. If the companies could come up with a drug to stop / reverse this condition - how much should the price be? $64,000? $150,000? I suspect that sufferers and / or their partners would sell their homes to get their lives back and no-one would be questioning price / profit / marketing tactics. Unfortunately, we are not yet in this position.

I think we need to move on from the 'drugs companies bad' standpoint. Many are producing drugs which are saving lives. It's unfortunate that the drugs for MS have to date been pretty ineffective (probably due to the fact that this is a much more complex disease than originally thought), but as other drugs companies move into the market this should improve.

Government's could set up and fund their own drugs companies, but I fear they would not pay the rates required to attract the best researchers or take the risk of funding drugs which may never make it to amrket.

Your obedient servant

This is like a good boxing match keep it up, i've lost track of what round were in but lets have a KO none of this decision shit...