This Is MS Multiple Sclerosis Community: Knowledge & Support

Gici recently commented that a lot of money will be saved by this treatment if it is shown to be the singular treatment for MS (not yet proven)

I have insurance--a cadillac plan too. I have been on copaxone since it came out. It was originally a shocking 1200 a month. My husband and I at a job change had some scary time worrying about how to get it.

I remain on it though I have stents because it helps my RA very well.

But guess how much that drug is NOW.....for some reason I got a bill when I usually do not even see it, but the bill stated cop is now 2700 dollars!!!!

How in the heck did a drug go up in value a magnitude more than it should have based on inflation? The inflation rate has been roughly 3% a year since cop came out which would put it at roughly 1750 dollars or so today.

This is nothing short of gouging a captive population.

One good thing about surgery is that once it is accepted you can shop the prices a little bit if you like. It really should be more reasonable for a treatment even at the prices I paid at Stanford. I believe these prices will go down once it is accepted. They can skip the MRV (8,000) and dopplers (900) and go straight to a CT (for 1000) then surgery and venograms.

It may end up being a reasonable 40k-50 for treatment.

I mean really; cop is nearly 33,000 a year for that drug and they know it does not stop the disease but can only show the slightest benefit??!!! It might as well be someone getting aspirin for their arthritis, it is about the same quality of benefit......but paying as much as if they'd had extensive medical care of some kind!!

It is shocking.

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I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

I feel your pain girlfriend. My first 6 infusions of Tysabri cost me over 5 grand with deductibles to meet and the way they reset on the calendar year so I had to split two years for the first 6. Makes you want to vom. I'm still paying the one specialty pharmacy. You ought to here me rip on the payment people there. The bill was over 3 grand on that one and I told them I'd pay $250/mth. They begrudgingly accepted, but they still call and want the whole balance every month. We get into discussions about good faith efforts and getting blood out of a turnip and all that. Actually they are more like chastising sessions since I know that they know as long as I'm paying that dillegently they can't touch my credit, but it doesn't keep them from threatening it. I just say, "I have all the cancelled checks, have fun and I'll see you in court, by the way, what's your last name", they love that.

I HATE THESE F_ING DRUGS right now. They just piss me right off. I sat in my neuros office when I first got dx'd all doe eyed and just ready to "start treating" this monster. People will do just about anything when they're that scared and that uneducated. It's like I tell everyone about this; knowledge really is power when it comes to MS.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

God, I remember the bloody Rebif DVD, woman on a bike, smiling happy families all that jazz.

Thinking back we were so naieve. The neuro made it sound like as long as she took the rebif everything would be fine.

"It's not like it was, having MS now is so manageable."

Then we went to a meeting in Houston of Rebif takers, free dinner put on by the drug company (this was about three weeks after diagnosis) and it was horrifying.

We left after about 10 mins, there were people in very bad shape there. The scales fell from the old peepers a little bit then.

Then I actually started looking into the efficacy of Rebif and the other drugs, was shocked and turned into an internet junkie.

Which led me to TIMS, hicy and CCVSI.

What a ride.

my insurance changed a few years ago... my copay on copaxone went from $100 a quarter to $700 a month. Luckily I could afford it, but I was going to stop and just put the money in my son's 529 plan instead. Luckily my wife's plan, I only have to pay $30 a month... so the tough decision did not have to be made.

Big pharma is raping us. I hope CCSVI eliminates the need for injections

Nothing like a 700% increase in one of your bills! That must have made your head spin!

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

MAN!! NO kidding! we need not only health care reform but pharma needs to be reigned in. Are we all writing our congress people?

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I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

Big pharma is not necessarily the bad guy here. Keep in mind the hundreds of millions of dollars that it costs to bring a new drug to market. They have to recover that expense somehow. Unfortunately, from a financial perspective, the number of MS patients is a relatively very small one over which to amortize the massive R&D for some of these drugs. "Reigning them in", i.e. limiting or reducing their profits, will only decrease or slow the number of new drugs coming to market. Are they frustrating to deal with? Yes. Are they evil? No.

As way of disclosure, I do not work for or have any affiliation with the pharmaceutical or medical industry. I am just a patient and I have experienced lots of financial frustration myself in being treated with mitoxantrone, Rituxan, and now Copaxone. However, taking away these companies profit motive is not the answer, IMO.

We have a dear friend and former neighbor who was the CFO at a huge pharma company. When Jeff once asked this friend, "So, when are you going to cure cancer?" the response was- "Are you kidding? We don't want to find cures. We just want to find something you'll have to take the rest of your life." This person has since left the pharma industry. Jeff was shocked at the reply. The next year he got his MS diagnosis, and those words rang in my head.

I am not saying pharma is evil, but we need to realize there is a profit motive involved. There's an interesting article on the general thread about how placebos are now performing really well, better than ever, in clinical trials....and part of the reasoning for the improved placebo effect is that people now expect a pill will make them feel better, thanks to the non-stop advertising of big pharma. All those happy people on bicycles, picking flowers, having great sex, etc. Those images connect to us at a basic level and say, "We have the answer to your problem. Trust us. Take our pill." And we believe it.

Patients need to take a step back and ask some hard questions. That's why I keep coming back here, because patients and caretakers are asking those questions here everyday. Jeff wants to keep taking his copaxone. I told him what I thought, and he felt that he wanted to cover all his bases...I respect his choice. Like Marie, we're thankful for his insurance.

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

I won't beat a dead horse. One more response, and then I'll shut up. I promise.

I agree with both of you, cheer and cureIous, for some drugs, maybe many or most of the drugs, that are marketed. However, I'm not sure that you could lump in with the generalization that they want to keep you on a specific drug forever for such drugs as antibiotics, antivirals, vaccines, etc. Gardasil is a great example. Would you not give your adolescent daughter a Gardasil shot just to prove a financial point to the pharmaceutical companies? (Now you may not give it to her based on uncertainties concerning the long term side effects that have yet to come out, but that is not what I am talking about.)

I agree that they are motivated by one thing pure and simple--profit. However, profit is not necessarily a dirty word. I don't agree with Gordon Gecko ("Wall Street") that "greed is good." I would say that greed is necessary, though. How do you motivate someone to do something that they would not ordinarily do? I still have a job thankfully, and one that I like. If I were independently wealthy, would I be doing what I do on my own free time? Definitely not. I work because I need the money and the benefits.

Research takes money. The way Merck acquires this money (debt, stock, drug sales) may be less efficient than the way say, the Myelin Repair Foundation acquires money (donations and licensing). But I still want them doing what they do even though they may be less efficient and even though their motive is purely financial. I want as many organizations as possible looking for treatments and cures regardless of what motivates them. If it's money and profit, so be it. Money talks...

Wow, after reading what I just wrote, I almost sound like a republican. I'm definitely not one of those.

If you read The Truth About Drug Companies by Marcia Angell MD, former editor of the NEJM and an authority on these things, she debunks the notion that they need this profit to be in business with financial sheets and public records. That is the story they want us all to subscribe to because it keeps us willing to vote with their interests in mind but the fact is that these are the most profitable companies around and they do business in a way to create markets where there used not to be any or to manipulate patents and products for the reason of profit.

The fact is that most of the initial research is done at our public institutions (universities) then the patent sold to the company so they can manufacture and market it. The billions they claim is needed to do the trials is grossly inflated. They are not doing research from scratch, that is too risky, so they find a drug on the market that is already working than create a similar product and market the heck out of it to compete head to head with the other one. This should make leaner companies with reasonable drugs but it does not. They collude instead to keep prices up.

Another thing to be exposed to is "Side Effects" a movie made by a pharma rep regarding the industry starring Katherine Heigl. The movie is short and about the tactics on the marketing end of things.

CLICK FOR SIDE EFFECTS

My dad is definitely making the pharma argument to me all the time. He is an investor of great skill, and considers pharma a critical part of his portfolio. He wouldn't read Angell's book........

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I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

I get that billions of dollars are needed for research and that profit is not a bad thing. However, how can Teva raise the price of Copaxone from $1405.73 when I started taking it in May 2006 to $2,567.21 this month -- yet the cost of Clonzapam, also a Teva drug, is still only $9 a month for 100 pills, pretty much the same as it was in 2006? Something's really wrong with that. The price increases aren't across the board to fund the research. That's just one of the many reasons I'm so infuriated by the cost of the CRABS and the way pharmaceutical companies operate.

Or the many who have had their cancers go into remission, the most high profile I can think of being Lance Armstrong. I don't think he has had a dose of chemo in 13 years.

From wikipedia:



side effects from gardasil have included death and guillain-barre syndrome. Merck claims that none of these are related to the vaccine. Merck produced Vioxx and we all know how reliable their statements on that drug were.

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3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,

Also, the four types of cerv. cancer that Gardasil protects against are not "difficult" types. Not that any cancer is easy, and it doesn't protect against the nasties, or so I've heard.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com