The rising cost of MS drugs
 

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! :mad:

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! :mad:

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.

:mad::eek::mfr_wha::hissyfit::vomit::Scratch-Head::Help::ranting::Soapbox:

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.

It is infuriating isn't it??? :mad: Just recently I recall reading about how MS drugs have gone up 20-30% in cost. The article speculated that it was because Gilenya came in at $48,000 and upped the ante for the other companies. They felt, well if Novartis is going to charge almost 50K, maybe we should raise our prices too.

And then combine that with changing insurance plans that offer less and less. My MS drug costs have gone up monthly by $90 over the past year. And I feel bad complaining because I know that other people have it much much worse.

Another reason that I'm glad that I quit the copaxone. (didnt like the side effects, didnt think it was doing anything)

If I try anything else, it'll be LDN. Just need to find a doctor to give me some.

And I nearly fainted when I found out my Crohn's med, Pentasa, goes for $1,600/mo if taken at full dose. I am now weaning off of it. So glad I haven't signed on for any expensive MS drugs . . . . :eek:

Idiot, We gave you the name of a Doc who prescribes LDN. Whuz yer problem?:rolleyes::D

a weird fear that the person wont believe that I have MS and will hang up on me when I ask for it.

Sometimes when I try asking a doctor for anything, my mouth gets all weird and the words I'm trying to say dont come out right, and then I end up looking like a nutjob or a drug addict, or something.

I think I'll try calling that doctor this week and see if I can be coherent and get it done already.

Sally, you're waaaaay to meek and mild!! :D :rolleyes:

I don't see where there'd be a problem with you asking for LDN. It's not a narcotic. It doesn't make you high, or feel any different. The only difference you might feel is less MS symptoms.....and that would be a good thing.

I've asked a few local doctors for it, and they think I'm nuts for asking.

also a bit scared that if I do get a Rx that it wont work for me, and I guess I'm afraid of the potential for being disappointed. I think I'll try calling this week tho to ask for it.

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:eek:. 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

Thank you for your post Vic and I am happy that you and your MS have come to an understanding.:) Same here!!

Good Wishes:hug:

Hooray Victor! I have missed hearing from you. :hug: I was amazed at just how bad I felt while on that stuff, and they kept forcing it on us, even when we begged to quit. Suffering with increased LFTs, gastroparesis, PAncreatitis, and horrible skin issues, let alone the mental and emotional stress, they said "just keep shooting." UGH! I quit when I reached the ENOUGH! phase and didnt care if it meant divorcing my spouse or MD. I just couldnt take it anymore.

We need better options. :(

Vic - It's great to see you post again! We miss you around here!:hug:

RW - It's crazy!!!! Copaxone has gone up so much it is unreal! $3,000 +/- a month is just ridiculous. When I 1st started it was 1/2 that amount. I have started looking at alternatives to the CRABs and will be bringing it up with my neuro at my next appointment - LDN is on my list. It's all a crap shoot as to whether the meds are working for one or not. And, I often think, if I didn't take C would I still be where I am today? It's very possible.

wow...just wow! I had NO IDEA about the cost of MS meds... when I first went on betaseron I had a co pay with blue cross blue shield, but it was not overly high. I think, but not sure, at that time beta was around 1200$ a month (in 2000) of which I paid a small co-pay. In 2004 after Roy and I married, I switched to Tri-care and the 3 month supply from xpress-scripts costs me $9 so I have not had a clue about what the charges were for the drug since I first went on it. OMG it's almost tripled in price! Why isn't it coming DOWN with more people on it?

I don't get it, I just don't get it and I would love, love, love to let it go but how can I when I've not had one diagnosed "relapse" since the original flare in 7/2000?

I'm certainly on board with those of you going bareback and not looking back. I know for Dej the cure was as bad or worse than the disease itself.
:grouphug:

Amen, Vic. I don't see how some of those in the Big Pharma industry can sleep at night. :mad: Feeding us scare tactics to keep us taking their concoctions because "you never know if it's helping". I wonder if they'd tell their Mother the same thing if it were her with this disease?

I've gotten more results and help from LDN.....which is by far the most inexpensive of the meds listed.....yet it is the med the Neuro's poo-poo the most. Wonder why? :rolleyes:

P.S. It's good to see you back here. How's Tania?

You've never had a relapse? I wish my MS would behave like that. Every time I turn around, Whap! the MS is smacking me around. (Bad MS! BAD!)

It's weird how one person's MS hardly ever bugs them, and another person gets something new from their MS every few months.

Vi and I talk about that all the time. One person can drag a leg and the next will go blind, while the 3rd one has an itchy...um...bum bum..hehe. MS is like a fingerprint, no two are the same. No wonder the MDs stand around scratching themselves trying to figure us out.

Vi is also being quite kind. MS has most definatly affected her life, and she has struggled with it, but she considers herself blessed to ride the rails without too many ups or downs in the road. She amazes me with how much she has been able to get done. She thinks nothing of jumpin in her truck and driving from Alabama to New HAmpshire. I simply cant do that anymore.

If I didn't have insurance I wouldn't afford these meds. Between the Copaxone and Nuvigil, they cost more than I make in gross pay per year. I sometimes wonder if my employer is aware of the amount of my RX claims or if that is kept under wraps since it is such a large company. :confused: I work my tail off so they won't think of me as a burden.

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'......:rolleyes:

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, :hug:

ACTH shots
 

Prednisone didn't work for me, methniprednisone (sp) didn't work for me. The other meds weren't out then except for the CRAP meds. ACTH (ACTHAR shots) were tried. They made me feel 100% better and lifted the acute MS attack.

ACTH doesn't slow MS but does lift the attack. To me, they work so much better than these newer drugs with all their side effects. Before ACTH became expensive, I would get a 7 day supply for $45 through NORDS.