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    #31
    I was part of the trial. I took the risk with my health, had lots of doctor visits, blood tests, MRI's etc.
    I had great sucess with the drug but it could have gone a different route.
    Now that the drug is approved I have until next year and then I have to pay for it.
    My Medicare advantage plan does not cover the drug and even if they do I will have to pay 33%copay, I also will hit the "gap" after only 1 month.
    I don't qualify for help !
    Well if you don't need it you get all kinds of insurance but when you're sick ??????
    I guess I have to discontinue the meds, like it or not !! I never thought that I would have to make such a difficult choice, my families future or my health ?

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      #32
      Originally posted by moody View Post
      I was part of the trial. I took the risk with my health, had lots of doctor visits, blood tests, MRI's etc.
      I had great sucess with the drug but it could have gone a different route.
      Now that the drug is approved I have until next year and then I have to pay for it.
      My Medicare advantage plan does not cover the drug and even if they do I will have to pay 33%copay, I also will hit the "gap" after only 1 month.
      I don't qualify for help !
      Well if you don't need it you get all kinds of insurance but when you're sick ??????
      I guess I have to discontinue the meds, like it or not !! I never thought that I would have to make such a difficult choice, my families future or my health ?
      Yes, it is sad that we have to make that choice. That's why I'm so indignant about the Gilinya pricing. I pay a 25% copay and cut back on the $777.10 copay by only injecting half a dose a day. I tried a 1/3 dose but had a relapse. It's a terrible choice to make. I don't qualify for help either and that is not the only drug I take although it is the most expensive drug I take.
      Diagnosed with spinal MS in 2000. Main symptom Pheripheral Neuropathy. Also hypothyroid, Raynaud's phenomenon, Drug-induced Lupus, hyperparathyroid and diabetes since 2000. Take Copaxone and 600mg ALA 2xday. All nerve problems are healed.

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        #33
        The cost of drugs aren't bsed on the devopment of that drug alone.

        Drug companies try to develop hundreds (if not more) drugs per year. Most of them never make it to market. The cost of a drug that *does* make it to market has to defray the cost spent developing drugs that never do make it to market.

        And of course, a drug with a limited target audience needs to cost more than a drug with a broader audience, because less with be sold.

        Of course, logically I understand that, but that understanding didn't help me alot when 4 years ago my Rebif copay went from $30/month to $400/month.
        ~Victorya~
        ------------------------------------------
        -Better living through chemistry

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          #34
          What is the purpose to make a drug (again) that the average person who wants or is able to work cannot afford? I have watched my drug for instance, go from $1600. to $3400. in three years. I qualify for no help because I hold a job and have insurance which by the way, my drug maxes out in July every year. I'm so disgusted with another company coming a long with a medication that is so far out of the majority of MS patients price range it just outrages me. There is NO excuse for it. NONE.

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            #35
            Now don't get mad at me!

            The cost is what it is. I too could not last long if I had to pay outright. I have insurance and get some assistance. If I didn't i'd never be able to afford it.

            However, it is what it is. We can research it to our hearts content, but ultimately we should take it to the companies and ask them for help and the WHY of it.

            Drugs are Big Business.

            Recently I was refused my refill for my BP medication which I've been on for 6 yrs. It works for me over others I'd tried.

            Now, since i am on Medicare with a Medicare Part D supplemental insurance I am instructed that many of my drugs are what they call 'Tier 3 or Tier 4'. Believe me you haven't lived till you get to be 65 and are faced with the dilemma of Medicare.

            I am arguiing for keeping on my medication, but I'm aware it could be a losing battle! That means I might have to try others (already tried one that gives me leg cramps at night).

            We need to unify and write reasonable complaint letters to the companies who make our drugs. Being angry or having a 'pollyanna' point of view won't help. Be factual and keep at it like a bull dog with his teeth locked on his prize.

            There's no use crying or using the 'not fair' argument though it's not fair and certainly a cryable situation.

            Don't forget to utilize your political representatives too.

            Diane
            You cannot dream yourself into a character; you must hammer and forge yourself one.

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              #36
              I don't understand the fuss about Gilenya since it's risk is significantly greater than the CRAB injectables. And the price, people asked how much the new medications would cost, of course they will cost the same as the established ones.

              With Medicare it pretty much doesn't matter what the cost is, with the donut hole and all ,the costs are kind of predetermined. Only big change is copay recently went from 25% to 33% before the donut hole. The total out of pocket just slowly creeps up each year.

              For 2011 the donut hole may get cut in half for many, but only if your drug companies sign up for the assistance program. Answers should be available in Dec.
              Bill
              Scuba, true meaning of Life! USS Wilkes Barre 91, USS Monitor 96, 97, 99 .. Andrea Doria 96, 98 .. San Francisco Maru 09

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                #37
                Originally posted by eileenkq View Post
                I pay a 25% copay and cut back on the $777.10 copay by only injecting half a dose a day.
                I thought Gilenya was a pill???

                CrazyCatLady
                MS Does Not Define Me.....My Love of Tea Does! LOL!

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                  #38
                  I tried to get help with my Copaxone (I had no insurance before Obama's change, now I do have a small policy - what I could afford - but it pays only 25% of a prescription with a $1000 annual cap - big help!) but I made too much to qualify. My annual salary is just a tiny bit over what Copaxone or Gilenya costs per year. Yeah, I could pay for one of those drugs, as long as I forgot having a house, car, food, clothing, etc.

                  I am still getting generic Copaxone from India and taking it every other day. That cuts my expenses down to about $600 per month.

                  I had hoped that Copaxone would cut their price to compete with Gilenya, but nope! - they raised it!
                  Polly
                  MS hit like a hammer out of the blue May 1, 2007
                  Life is hard, yard by yard, Inch by inch, it's a cinch.

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                    #39
                    I have wrote our politicians to only get a form letters back. I also work for a retail drug company and know why some drugs are priced high, which actually has to do with the shipping drugs made in the US to another country who owns the rights, then they are shipped back to the US for sale. Seems kind of dumb doesn't it. So when I hear the "pollyanna" comment or don't be angry that is kind of insulting. I'm far from just sitting around and just pouting. I'm just saying the drug companies are a business and they are USING us for their profit. They get a person all excited of a new drug that can help and boom, price comes up and that fizzles the excitement. And had maybe a politician out of the 5 I wrote in OHIO to actually write back on the actual subject instead a form letter I might have a little more faith in them. lol So one thing is right, it is what it is.

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                      #40
                      Does anyone have supplemental insurane that covers the GAP?

                      Does anyone have supplemental insurane that covers the GAP?

                      Medicare/Medco just isn't adequate....

                      TY
                      Kat
                      Nothing is Impossible.......

                      Dx'ed in 1988
                      Founded MSWorld in 1996

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