Yeah, it's completely ridiculous. Helping us get out hands on such a thing should be a priority for advocacy groups like the ATA and the BTA but they are all complete losers and hard headed as well. It's almost like they are purposefully looking away from anything that could treat us.
Would this potentially screw up Phase 2 testing, though? Maybe a workaround could be an airtight NDA.
Yeah I don't even know if Hough Ear would want such a thing. This is just maddening that something that is safe is restricted for us to try ourselves. We're being told by a scientist that it can treat tinnitus. It's like who is the person stopping us from having this? There surely is someone at the FDA that has the authority to allow us to have this treatment.
Hearing related disorders are literally ruining countless lives and it is totally heartbreaking to think there could already be a treatment... we just can't access it
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No idea. All write letters to the same people at the same time? Raise money and send Hazel or someone to lobby for us?
Let's start with people to write. Who do we include and based on which criteria? Researchers? ENT association board members? Politicians? Companies?
I think we should have two goals in mind when taking action:
I agree with all these points.
No, I can't. It would be unethical. Not to mention put the research in jeopardy, the researchers and their reputations, etc. It would do no one any good if we got shut down.
I asked this when I was in OKC. Could I kick start enough funds and then be in a trial? They said it's not ethical to recruit that way. But I could sign up to receive notice of recruitment which i did (sign up, haven't received a notice).
Thank you but I am nothing like that at all. I just have a medical background and am utterly obsessed with trying to learn everything I can to try and get my life back. I used to be so joyful.
Expanded use is not just a case of the company signing off on using their not (yet) approved drug. The FDA also requires there aren't any alternatives and that you can't participate in a clinical trial. We'd also have to contact the FDA (and the EMA) to ask how this is related to hearing loss drugs.
How do we phosphorylate our GSK3 in our supporting cells in our cochleas without giving ourselves cancer? I know inhibiting notch and also stimulating EGFR can do it but that's kinda risky to do systemically.
A lot of respect for your work. Personally, if there was a pill that wasn't the cure to tinnitus but helped reduce it.. however I'd have to wait 2-3 years for it or more, I'd put aside all ethics and just swallow it. I'd take the risks. But that's me.
Considering that this treatment has been stuck in trial purgatory for years, looks to me like the process itself is unethical.
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