I am not sure how I missed this and my apologies if it has already been posted...

It just stunned me and then it made me angry, as a patient who is hostage to big pharma companies because I have a chronic incurable disease and choose to take a DMD to improve my quality of life.

The rising cost of MS drugs:

All costs listed are for drug only and are approximate cost per year. You or your insurance company may pay more or less depending on what kind of coverage you have.
Copaxone $42,300.00
Gilenya $48,000.00
Tysabri $42,788.00
Avonex $37,544.00
Betaseron $37,294.00
Rebif $36,825.00
Ampyra $12,850.00

http://www.bloomberg.com/news/2011-0...-ms-drugs.html

4-AP- Skip's pharmacy cost w/compounding $95.00 for 100 day supply/3 10mg caps a day (cost as of 02/11)
Low Dose Naltrexone- Skip's pharmacy cost w/compounding $66.00 for 100 day supply/4.5 mg day (cost as of 02/11)

I'm off on another letter writing campaign to my Congressmen and women and my Senators and the President and the papers and whoever else I can bother this week!

It's criminal! I mean, all of those drugs, with the exception of the last one, cost more per year than most folks make per year. It's just ridiculous. And don't even get me started on the side effects. They just open the door for more profits for big pharma. Just makes me sick. But there's no med for that!

What I hated was that they push them so hard at you, and then dont tell you the real effectiveness of them. 33% for the CRAB drugs to "maybe" prevent the next relapse. Then when you complain whether it be money, side effects or want to try CAM they argue and fuss and kick up a storm. I am now bareback and my MRI didnt change one bit. That is not to say that these drugs may not be more effective for someone else, or may truly save someone from a dramatic increase in disability but why oh why do we need to charge this much?? to those that are the least able to pay it??

Criminal. just criminal.

Efficacy rates by drug or what you get for your money.

Avonex 32%
Betaseron 34%
Copaxone 29%
Rebif 32%
Tysabri 67%
Gilenya 45%

And the others I named in the first post do not have studies that reliably quote efficacy in reduction of number of relapses/delay of progression or are for symptom relief. I'm not here to argue what LDN does or what 4AP does. I do understand that many people take them and have had
excellent results with them, but there was no study data available. If anyone has any data that shows efficacy rates in reducing number of relapses or delaying progression of disease for LDN or 4AP or Ampyra, please add it to this thread.

My Copaxone costs me almost $800 from a 30 day supply and only $50 for the Ampyra (which I'm VERY happy about) and then $10 here and there for other generic drugs. It is very expensive in my opinonin for the Copaxone. I cannot get payment asstance for it either. I do have to insurances and Anthum (Blue cross) kept telling me they will not pay as a secondary insurer.

That number for Tysabri is what Biogen tells us was the reduced "risk" for relapses/progression over placebo from their trials. Just recently, they quoted numbers from a two year study which showed a 37% reduced relapse/progression rate as compared to 7% for placebo, thus giving an approx 30% improvement. That put's it right in the CRAB category. While the cost for the drug is similar to the CRABs, the infusion charges on top of that make it by far the most expensive medication choice for MS patients.


Harry

I have a hard time believing the stats the drug companies quote to us. I also have a hard time believing anything the drug companies tell us. They're in it for the money. That's it. They know how the insurance industry works and how to make the most money from it. I know most of them have "assistance" programs for those of us without insurance and who are on a fixed income but they make up for it ten fold with the prices they charge those who do have coverage. They aren't hurtin'......

RW,

I just don't believe these stats anymore since I've tried four of these meds. I had relapses on Avonex, Rebif gave me very weird side effects abd symptoms, Tysabri made me feel worse. Copaxone is the only one that has totally stopped my relapses and allowed me to actually improve.

And I know others who have other similar stories but for a different med that works better for them. The main thing is to find the one that works for you, period. The stats really don't mean anything, imo.

I'm glad that Tysabri works so well for you though,

RW,

Your post (below) explains why I am no longer on any MS medication. Even with insurance (based on our tax calculations for 2010, with the carry-over losses from MS medication fees) I had to spend over $170,000 for three years of MS medication. These medications, with thier minimal efficacy rates, have bled us dry, but we learned a pricells lesson.

I am just letting natural selection play its role and feel so much better (mentally and physically) about it.

Big Pharma is playing on the hopes of the suffering, just like the old-fashioned snake-oil salemen did 1800's wild west. It is immoral in my opinion.

I have become more of a realist about the motives of big pharma (old classmates work for several of these firms and they have explained the dirty secrets of these companies spewing evangelical-like hope at the cost for thier meds).

It is amazing how much better and functional I feel not being dragged down the pharma road any more. One caveat is that some people, albiet few, are being helped by some of these meds. So they should be happy, and I wish them the best.

I have replaced personally my goal of owning/flying a P-51 with fishing on a quiet river, bird watching and cooking. And, I feel so much better about it.

Big pharma may have soaked my pocketbook/savings dry, but they have done me a great service, and that is to appreciate what I can do and what life has to offer if you just look around.

No complaints from me anymore. Just the satisfaction of enjoying life at the fullest.

Thanks for the post, RW. I hope things are going well for you.

-Vic