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Postponed video. Need recommendations on places to donate.

Discussion in 'Your Living Room' started by Nyynth, Apr 23, 2018.

  1. Nyynth

    Nyynth Member

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    If big-pharma and general extant interest within the medical community is absent, this leaves only the afflicted to generate interest and raise money.

    Minimally, aggressive interest has to be pushed by those with the disease. I see frivolous-whatever raise millions of dollars. The latest viral 'challenge' was of people snorting condoms.

    Meniere's is an excellent cause and I have no doubt people would give in order to help. However, people will not help unless we embrace our own advocacy and stop waiting for big-pharma, or whomever, to solve our problems -- and leave entitlement at the door when someone points out more could be done on different fronts by us, as individuals.
     
  2. Nyynth

    Nyynth Member

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    I don't know how you did it, but I appreciate you were able to bring the room to a conversation instead of a tailspin.
     
  3. Nyynth

    Nyynth Member

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    I do not think the expense of the operation over long-term drug-use would be that great.

    Lobbying the government would be a good idea if enough were interested. I think other forms of awareness may have to be present before it's an option. It definitely would be in their interest to allocate a budget to research instead of paying SSI to millions.
     
  4. Mac

    Mac Active Member

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    Nyynth,

    If part of your goal is to make noise to big pharms about how to cure/reduce symptoms for tens of thousands MM patients consider this.

    You are probably aware of Otividex. It is a sustained release steroid that Otonomy has been working on in clinical trails for the last decade.

    https://www.mirror.co.uk/news/uk-news/vertigo-sufferers-offered-oto-104-6891352

    For many this is extremely helpful. It puts out the inflammation and reduces symptoms. As with any drug...Some will benefit more than others.

    My thoughts are why not use anti-virals in the gel instead of steroids? This would get anti-virals inside the inner ear of more acute cases of MM. I believe this has the potential to be much more effective than just taking anti-viral pills. Similar to how they treat herpes of the eye. They put eye drops in the eye directly.

    https://patient.info/medicine/aciclovir-eye-ointment-zovirax

    Well... I am no scientist but its my idea. Consider it.

    Good luck with your video.
     
  5. mbgphoto79

    mbgphoto79 Member

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    Mac-

    I saw somewhere that this med failed the third trial and the company quickly went out of business. It’s a shame because whatever formula they were using as a gel was an ingenious idea.
     
  6. Mac

    Mac Active Member

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    They did not hit their endpoints in the US trial. However their European trial was extremely successful.

    http://investors.otonomy.com/news-releases/news-release-details/otonomy-reports-positive-results-averts-2-phase-3-trial

    They are not out of business...They still trade on the NYSE (OTIC - symbol). They did cut staff after the US issue but they are by no means out of business...They are currently doing another trial in US starting this summer.

    However - my thought was pressing someone on anti-virals in place of the steroid gel. If Nyynth is going to kick down doors of pharma companies this would be an interesting angle. That's all.
     
  7. mbgphoto79

    mbgphoto79 Member

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    Ahh good to hear. Can’t trust everything I read on the Interwebs. Better yet, how’s about a combination AV and steroid injectable gel?
     
  8. Mac

    Mac Active Member

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    I guess my grammar was a little off. Sorry.

    That what I’ve been referring to. Replace the steroid with an anti viral gel.

    Good luck with it Nyynth. If you need to know where the bodies are buried at Otonomy Inc. let me know. I’ve been pounding those guys for years.
     
  9. I used to work for a drug company. The problem is that to get a new indication for a drug, the FDA requires extensive studies (and multiple ones at that) in order to give their approval for a new indication. These studies cost the drug companies millions and millions of dollars and there is no guarantee that the FDA will even give it the okay. When a drug is already available in multiple generic forms, the drug companies can no longer recoup those costs from the studies - therefore, they won't take it on. It's a bummer, but happens with every drug out there. Once a drug is off patent, the companies basically cut it loose!
     

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