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    Am I alone in thinking...

    There doesnt seem to be as much emphasis in curing MS as there is creating high priced drugs to moderate the disease or alleviate the symptoms. After all, the gravy train is over if a cure is found. I spent 11 years on copaxone and watched it go from $850 to $3500 /mo. in 2010. My insurance company and I spent over 180K in those 11 years The fact is there are billions riding on not curing MS. Now I'm on disability and medicare so they wont get any more from me. Even with drug coverage cant afford the copay. Not poor enough to qualify for help, thank goodness for small blessings. Thanks for listening to my rant.

    #2
    I hear you and wonder the same thing. We are just ginnea pigs to Big Pharma...grrrrrrr.







    .
    Last edited by SalpalSally; 12-11-2012, 09:35 AM.
    Love, Sally


    "The best way out is always through". Robert Frost






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      #3
      Thanks for the rant and welcome to Braintalk's MS forum.

      It was a particularly good rant, I'd say.:)
      ANN
      There comes a time when silence is betrayal.- MLK

      Comment


        #4
        Welcome, Robwill57!

        Rant away. This board has a long history of rants.

        Congratulations on sticking it out with Copaxone for 11 years. That's really impressive. I lasted only about 3 years on it.

        Oh, and in case you think you're safe from any more Copaxone--I never paid a cent for it and I was on Medicare/Medicaid. It was completely covered.

        Did you see any good effects while you were on Copaxone? Fewer relapses than you were having before?
        SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

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          #5
          Welcome Robwill57,

          I agree with everything you say, however if just one of the drugs they come up with "stop it where it is" I would be satisfied with that, but they don't even
          do that. The price just goes higher and higher. I am on Rebif and have been for about eleven years. I worry about whether or not I have built up antibodies
          to it, but I don't get tested because I would panic if I have. There are no more drugs at this time that I can take.

          If you feel copaxone was helping you call their drug company direct and ask if there is anything they can do to help you. I am on Medicare with Prescription Part
          D and believe me if the Rebif people did not help I could not do it.

          Good Luck
          Virginia

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            #6
            Welcome to the MS forum....You have come to a good place for ranting, whining, b i t c h ing or whatever you feel like doing on any given day or time. You are definately not alone in thinking that BigPharma is all about the money and not the cure. My neuro has tried me on a number of different expensive drugs both in the hospital and at home....none of which has improved anything at all. In fact, most have had some serious side effects and landed me in the ER on more than one occasion.

            At my last visit he offered me a choice of any of 3 different drugs all with very serious side effect profiles. Since the last drug (Acthar Gel) of his choice costing $30,000 for a 5ml vial.... for a 5 day self- injection into a thigh muscle did absolutely nothing but cause more problems.... I am of the opinion that I will just progress without the benefit of more unknown side effects which are on top of my already.... known effects of the MS. I recently discovered.....in my research that my myasthenia gravis was probably brought out by 9 months of interferon injections.

            Enough of the whine.....pass the cheese please.

            Gabriella
            Last edited by Gabriella7; 12-10-2012, 09:50 PM.
            Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
            Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

            "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

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              #7
              Robwill, welcome.
              It would be wonderful if a cure were found, but I'm not hopeful. :(
              Actually I have a completely opposite rant. When the National MS Society does its fundraising (I'm thinking the Walk MS, etc) the publicity is about finding a cure. To me it's a false promise, or at least one for the far future. What about better methods of diagnosis and adaptation for the here and now?

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                #8
                That was not a rant at all.
                The pharma corps that make these are not interested in curing the disease.
                Someone else is going to do that and I hope that a cure will not be smothered
                by the threat of lost revenue.

                This reminds me of the documentary titled something like Who Killed the Electric Car.
                And the first Henry Ford quoted as saying he would give away cars if
                he had sole rights to repair them.

                Biogen, Teva, Pfizer and their like- i don't think any of them are going to do it.
                Some research oriented entity more involved in cure will probably
                make the discovery for at least some of us.

                There are good people working in medical research.

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                  #9
                  There might be something about neurological diseases that makes finding a cure very difficult. Even polio wasn't cured--it took a vaccine to wipe it out. As far as I know, there's no cure yet for ALS, Huntington's disease, myasthenia gravis, Parkinson's disease, or Alzheimer's either.

                  I don't know--just wondering though.
                  SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

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                    #10
                    Welcome to the board. Please rant away I am sure that everyone is sick and tired of me ranting about everything all the time!!

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                      #11
                      My thought on this is, even if it's cured tomorrow, how would that change our current status? Our biggest problem is due to scar tissue through out our bodies. You can't repair scarring once it happens.

                      mark s.

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                        #12
                        Good morning all, I just read all theses post and you all are right...I think if they cured anything they would be in the red
                        With . My husband had to take a very expensive medication for ulcerative colitis, it cost thousands for one months as he has to take many many in each dose...I read where the brand company is paying the generic company to postpone put it out in Generic form ...this keep their big money coming in and the Generic companies get their estimated profit as well!
                        Yet we s ramble to afford the med , this whole thing is wrong, there should be a " watch " group to keep this from happening. Okay there is my rant ...one of many that are bouncing in my slightly damaged noggin, GING

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                          #13
                          Well crap, I was ranting in the wrong forum....sorry :( GING

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                            #14
                            Ging- it fits right in. There is no "wrong forum" for issues like this.
                            ANN
                            Last edited by stillstANNding; 12-19-2012, 09:10 AM.
                            There comes a time when silence is betrayal.- MLK

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                              #15
                              Ging, sounds like you were in the right place to me.
                              Virginia

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