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    #16
    hunterd - You should check into that deductible. My deductible uses the reduced amounts charged to doctors and pharmacies - not the full price. I am self-insured, not on a group plan. Maybe that makes a difference.

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      #17
      I second that....

      Originally posted by khris View Post
      they can keep it as far as I am concerned. I take Rebif and I have been so annoyed that they can charge so much for a drug that may or may not work to reduce flares by 30%. If I had a headache I wouldn't pay a penny for something that would help only 30%....it is all greed.
      I stopped Avonex because it didn't seem to work MOST of the time....started LDN but stopped after six months or so...it didn't seem to make a difference either..Ive been clean for a couple of months now and doc has warned me to take something...I wanted to try Zenapax but it's discountinued so I think its going to be Tysabri. Some folks here say its helped them..and I've had similiar sxs. We will see how insurance deals with it...that may make a difference...You see I REFUSE to surrender living life to PAY for drugs. Thanks for listening
      [I]Tellnhelen
      Progressive Relapsing MS

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        #18
        Grace call Ampyra's 800 # and ask for copay assistance, they have a program where no one is supposed to pay more than 40.00 per month, I also have medco/accredo and you have to watch them they will invoice you for a shipment they haven't shipped yet and do apply the copay assistance to the invoice either. I never pay them for the month until I rcv an invoice that is correct.

        As far as the cost of drugs my sis and her husband both work for the company that makes Gilenya, they where telling me that they spend 100's of millions on liabiltiy insurance alone not to mention the cost of the initial research, test trials , FDA approval etc, yes they make $ but in't that the purpose of a businees? Don't get me wrong I am not defending them just making a statement regarding the cost of drugs, want lower prices get rid of 3/4 of the lawyers and tighten the rules as to who can be sued and for what and put a cap on settlements.
        Plan for the future, but not too hard; it’s not your decision anyway

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          #19
          Not sure all this info is incorrect

          Originally posted by Chais Papa View Post
          The price seems absurd considering it is just a remake of an existing drug.
          While it is based on a fungus used in Chinese herbal medicine, my understanding is that it works differently than any other medication for any purpose (since it alters the immune system itself), and that is one of the reasons FDA approval was initially postponed during this year. It is also my understanding that the clinical trials over many years and more than 1000 patients cost tens of millions, and perhaps hundred of millions. But perhaps I'm wrong.

          Originally posted by khris View Post
          they can keep it as far as I am concerned. I take Rebif and I have been so annoyed that they can charge so much for a drug that may or may not work to reduce flares by 30%. If I had a headache I wouldn't pay a penny for something that would help only 30%....it is all greed.
          Perhaps I read the FDA submissions incorrectly, but it stopped relapses entirely during the primary 2 year study period of 70% of the population --not 30%. And it did so with greater efficacy than an injectable --Avonex-- in a control group. And more importantly, many of the MRIs of those in the clinical study showed no progression of the disease, and it may be the first medication that actually slows progression of MS. But perhaps I misread the tests.

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            #20
            I agree - get rid of the sue-happy lawyers and the laws that allow them to be ridiculous and everything will be less expensive !!

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              #21
              It is sad to see the price that high. I always think of Jonas Salk and the Polio cure.

              Edward R. Murrow: Who owns the patent on this vaccine?
              Jonas Salk: Well, the people, I would say. There is no patent. Could you patent the sun?

              Bloomberg reported this quote from the Novartis spokesman:
              “Gilenya pricing is based on the value it will deliver patients, the scientific innovation it represents and our investment in studies to support the product,” Althoff said.

              Something smells really bad...

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                #22
                Is this really The price in all states?????????oh my,starve us not insurance company

                Originally posted by LOST ANGEL View Post
                Thanks for the price info. I was really hoping it would be some ridiculous, absurd price, like all the other meds! Wouldn't want the drug companies to starve.( Sorry, just being my usual cynical self)-MIKE
                ok i truely hope that the medicain will go another way-to get cheaper-for us people who want -instead of the injection=WELL also what about the states are they all the same-or is each one differnt=i would assume they are all differnt ---well--thank you for the info my friends here,on mschat sunshines

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                  #23
                  [FONT="Comic Sans MS"]"[/hunterd - You should check into that deductible. My deductible uses the reduced amounts charged to doctors and pharmacies - not the full price. I am self-insured, not on a group plan. Maybe that makes a difference."
                  it`s only one dr that does this. when i called and complained the billing dept lady said that was the policy they follow. the next closest dr that does the same thing ( a specialized surgery) is hours away. so to combat this, i won`t schedgule untill my deductable is met. and it annoys the dr to no end (i told him exactly what and why i was doing).

                  dave[FONT]
                  hunterd/HuntOP/Dave
                  volunteer
                  MS World
                  hunterd@msworld.org
                  PPMS DX 2001

                  "ADAPT AND OVERCOME" - MY COUSIN

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                    #24
                    hunterd - You should speak with your insurance company about this. This doctor's office may be violating their agreement with the insurance company by billing this way. It might be worth the call.

                    Comment


                      #25
                      I also read that it will cost $4,000.00 a month. No surprise as the cost of development and the ensuing studies is high.

                      You can google some info on cost of developing a drug. Often the drugs are developed in countries other than the US by the way.

                      The only meds which are relatively cheap are the most common ones which would be in use by a large population.

                      We have a neighbor who pays more than $50,000. for a cancer drug.

                      Be careful what you ask for though, incentive (as in $$$$$) equates to motivation to develop the drugs.

                      Sad but true.

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

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                        #26
                        Novartis to help pay for pills

                        Just saw this on Bloomberg.com that says that Novartis will pay for out of pocket expenses for non-Medicare patients who use Gilenya or as much as $800 a month plus as much as $600 a month for tests. Good new for those not on Medicare (unfortunately I am not one)

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                          #27
                          Originally posted by skeezix View Post
                          Novartis has announced their wholesale price for the newly-approved oral MS drug, Gilenya (aka Fingolimod).

                          $4,000/month or about $48,000/year

                          Copaxone: $39,928/year
                          Rebif: $36,825/year
                          Betaseron: $34,980/year
                          Avonex: $34,667/year

                          LDN 3.0mg $240.00/year and this is compounded. Makes you wonder why the doctors are not looking at this as a treatment more.

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                            #28
                            I've been in the study but got to tell you I was a bit taken back by the cost of the pill. I called my insurance co and when they typed it in, they couldn't even pull up a price. I was told the cost exceeded my benefit amount. Nice. The co-pay amount they could tell me would be 20% plus $15. Still out of my price range. I called my case study co-ordinator with this info as she was curious about pricing in the private sector. My only redeeming factor MAY be that I do go on Medicare in Jan as I was approved for SSDI in April. She was going to do some research as to how Medicare may be covering the drug so if I find that info out, I'll be sure to share.

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                              #29
                              Gilenya cost

                              Just called Medco, which is the drug company that my Medicare Advantage deals with, and they told me that my plan does not have Gilenya listed. I asked if it might be listed by the end of the year and she didn't know. My doctor has taken me off Tysabri in anticipation of my using Gilenya and now I am not sure I can even get it. There is the possibility that Medicare may cover it, in which case I would drop the Advange plan (Secure Horizons which is covered by the company I retired from) and sign back up for regular Medicare. It is bad enough having this $#@@& disease, now we have to battle to get a med that I have been praying for! Anyone else with this problem?

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                                #30
                                I just read it cost $40000. - $48000.a year, I'm so sick of these companies making unaffordable medications to milk the money out of us and the insurance companies. Then to be offered a whole $50 a month toward a copay is insulting.
                                My insurance maxes out which is why I take Copaxone every other day, of course they increased the cost last month so now it's over $3000. a month, so even that may drop down my shots to every two days.
                                Somehow I'm really starting to lose trust in these drug companies, because I don't see them wanting to help or cure anything, it's a business and we are just a buyer handing over money out of desperation so we can live our lives as healthy as we are able to.

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