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It's 1/2 way through 2014, still no cure

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    #31
    I like this thread. The conclusion I have come to about big pharma is that yes, they exist to make money, but imagine the money they could earn by coming up with a drug that has to be taken for life and that really improves and repairs MS!

    This motivation to find help for us is not exactly heartwarming, but at least I have faith that there is a motivation to find excellent new medications.

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      #32
      PositiveMS, you make a very good point. Profit is the motivator for big Pharma and we have some medicines for MS because of that fact.

      Marco’s post about Pelgridy pegged the price at $62,036 per year or $170 per day. There is nothing exotic about it. It is slow release Avonex; injections are once every two weeks. Seems pretty expensive for an old drug with a new delivery regimen. But it has a new patent so all is well in pharmaland.

      PositiveMS, we have some meds because of profit but another point is that we don’t have some because of the profit motive. I am not trying to be harsh or mean just making a point. (If that is a surfboard behind you and you live in Nova Scotia I am thoroughly impressed!)

      In an earlier post I said, “Under our present system inexpensive treatments which are generic or cannot be patented will not get FDA approval because no one funds large studies for them.” I believe the system is rigged that way (the FDA demanding hugely expensive trials) to keep inexpensive treatments out of the hands of clinicians. Some don’t mind because they are on industry gravy train, too.

      Our present system has evolved because of the relationship of the drug industry, government (drug industry sponsored politicians and regulators who often find jobs with that industry after regulating), and disease societies; a snug trifecta keeping inexpensive competitors off the track entirely.

      LDN, nutricueticals, ALA, clemastine, artesunate, other inexpensive drugs and supplements can’t pay the price of admission to the trials the FDA demands. How effective they may be, how superior or inferior they are we will never know because no one will fund large trials. Large trials are funded for profit potential.

      IMO, it is highly probable that LDN and artesunate are far and away safer and more effective treatments for MS than Pelgridy at a fraction of the cost; $350 per year compared to $62,000. But that is only my opinion. No trials are planned, nor ever likely to be.

      However, some promising new meds are coming. Two look very, very good; GNbAC1 and daclizumab. I believe we will see daclizumab approved within a year based on its excellent Phase 3 results. GNbAC1 looks even better but is further from approval.

      Love your attitude Positive MS! Thanks for posting.

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        #33
        Your post offers me some positive words to hank my hope on. Thanks Myoak. I always learn something from you.

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          #34
          I second what JerryD said. A post by Myoak is always a must-read for me!
          PPMS
          Dx 07/13

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            #35
            Good answer, MyOak. No, it doesn't seem harsh or mean, just realistic. I get that some possible "cures" may be overlooked because they would not turn a profit. I get that there is corruption surrounding drug approval etc... It's sort of disturbing, but I hold on to the hope that something great will be invented for us all.

            Yes, by the way, I AM in Nova Scotia and went surfing 5 years ago when I still could, and yes the water was absolutely freezing I'll go again when I can.

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              #36
              Why no cure?

              We have profit driven-Pharma, industry neuros on advisory boards at disease societies and industry funded politicians at government agencies. Pharma looks for profits, not a cure. They are looking for profits, not effective treatments.

              Only when an effective treatment is profitable will it be developed. Only when a cure is profitable will it be developed.

              There may be a host of effective treatments existing today but none will be developed if they cannot pay the price of admission for FDA approval; an approval system rigged by Pharma and friends to keep inexpensive therapies out of the hands of clinicians and prevent inexpensive treatments from competing with the extremely profitable FDA approved meds.

              Never mind their MS drugs are lousy, not tremendously effective and have awful side effects.

              Quote, “Speaking in Cotonou, Benin, Margaret Chan, the director general of the WHO, wondered rhetorically why clinicians are “still empty-handed, with no vaccines and no cure” for Ebola, even though the disease first appeared some four decades ago.

              “The R&D incentive is virtually nonexistent,” she continued. “A profit-driven industry does not invest in products for markets that cannot pay.”

              Chan’s story can be found by Googling the title, “The WHO Pillories Drug Industry on Failure to Develop Ebola Vaccine”

              Two things will help us going forward. Recognizing the reality of how things are today and as Positive said, “I hold on to the hope that something great will be invented for us all.” Hope is a powerful force; an initiator of change in this manner… if we hope things will change, if we want things to change, if we work to make things change, things will change.

              Change will come when the status quo is no longer accepted.

              Margaret Chan is boiling over. So should we be.
              Jerry D asked a great question. We have to focus on it, soberly. The current sorry state of MS research and drug development is intolerable.

              Disease societies please take note.

              PS… Love your optimism there in Nova Scotia; trust you won’t be surfing anywhere near Oak Island!
              PSS… Poppydarling, I would love to hear you are ok.

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