Frequency Therapeutics — Hearing Loss Regeneration

Much of it probably depends on the safety and profitability of the drug.

 

Have you gotten an extended audiogram? Because Frequency is using that data as an experimental endpoint and that should be usable to convince a reasonable ENT.

 

I can't see this being available on the NHS at least initially but I would definitely be willing to travel to the US to receive this if that were possible and it turns out to treat tinnitus/hyperacusis.

 

Not all people who lose a limb get phantom limb but loss of limb is the cause of phantom limb. Tinnitus is phantom limb of the cochlea.

Look up mirror therapy for phantom limb, the brain isn't stuck with maladaptive neuroplasticity when more normal input is restored.

Evidence this also happens with tinnitus:

-- tinnitus improving or resolving with treated Meniere's.
-- tinnitus improving or resolving in many cochlear implant patients.
-- tinnitus improving or resolving with treatable causes.
-- FX-322 anecdotes .

Etc etc..

 

@FGG and @Diesel I hope you guys are right. Actually, I'm praying you guys are right. I honestly can not imagine long term with tinnitus.

For the insurance to approve this will take a long ass time. But if patients show positive results with no side effects after a year or so, I'm cashing out for the treatment no matter the cost.

 

No. I'm not sure where I could get one as most regular audiologists don’t seem to offer this. I’m sure they’d look at me like I was crazy if I asked.

Also I feel like they’d use the argument that most people have high frequency loss by some age. Since this isn’t a common thing that’s measured how are we to assume the results are even relevant? Perhaps the entire human population has a bit of high frequency loss by their mid twenties unless they’ve lived alone in the woods in the quiet their entire life.

 

It's not normal to have significant losses under 16000 Hz if you are young. I'm 42 and my extended audiogram alone is what got my first audiologist to admit I had bilateral SNHL from ototoxicity.

From 16000 Hz to 20000 Hz (very few places measure this but @HootOwl had it done on the US West Coast) is less useful but everyone with tinnitus should get up to 16000 Hz.

Edit: Universities are your best bet for extended audiograms in the US or ENT centers that run clinical trials.

 

Got it. I’m on the West Coast but not really sure how to go about contracting universities for this? @HootOwl do you mind sharing?

It would be awesome if all of us “perfect hearing” folk managed to get extended audiograms for the ranges @FGG mentions to see the results.

 

There is two arguments to this. Firstly what you have said that doctors won't give it to patients unless there tends to be a proven hearing loss.

The second argument is that they will be able to use the Hough pill argument and provide it for patients probably through off label use/allowance. The doctors are allowed to provide pills or drugs to people when they have evidence that they would receive a measurable benefit from the medicine for an issue it has been demonstrated to treat, even if that issue is not the primary purpose of that drug.

So hearing restoration is the primary aim of treatment with fx, however there is also proof it treats tinnitus then there is very much scope for the doctor to then prescribe it for this reason.

I think that this will be the case for also me unless there is some mechanism where Frequency can start providing this treatment to people overseas. I am quite positive that the treatment will take a couple of years to be released in Australia unless the government is willing to make concessions to allow it. Then there is the side issue that overseas travel is banned for a while.

 

"Regular" audiologists will have their hand forced in this instance. I had a discussion with my ENT as to why they don't test above 8 kHz. His response: "We have the ability to, we just don't typically need to. However, we may eventually."

I know this is anecdotal. What this acknowledges is that the capability is there. In a demand-driven market, patients will go to Audiologists/Doctors that will provide the care/treatment for their problems. In this case, it is repairing High-Frequency Hearing Loss.

Some will be quick to adopt, and gain a ton of new business. Others will lag and adopt once it begins to impact their practice.

 

Yes, and it was at my normal audiologist’s office. Very nondescript, and actually in a strip mall so really the last place you’d expect to have high frequency audiogram equipment.

@Orions Pain I encourage you to call around. I think you might be surprised at what’s possibly available. If you’re located in the Los Angeles area (or within reasonable driving distance) I'd be happy to give you the name of the practice.

 

@HootOwl I'm in California too. Where exactly did you get this extended hearing test? I've been calling around and those that do offer it sound very shady (such as "will do extended test but you will need to book another appointment with another audiologist...").

 

Thank you! Did they ask you lots of questions when you asked to do one? As in why and what you expect out of it? Or were they understanding?

 

For anyone near the middle Atlantic states on the East Coast of the United States, the Jastreboff Hearing Disorders Foundation Clinic in Columbia, Maryland performs the full range of high frequency audiometry testing up to 20,000 hertz.

http://jhdfclinic.org/

 

This is what I’m worried about

 

What if it shows positive effect for tinnitus though? They’re checking for that in the phase 2a trial. No one can prove whether you have that or not.

 

If it shows up on the extended audiogram, I doubt they won't allow it. And if it doesn't show up on the audiogram, then it's really only useful if it manages to help essentially all tinnitus patients.

 

@Orions Pain @Thuan

No problem sharing at all! For anyone else who is interested the name of the clinic is South Bay Hearing.

BUT - make sure to book with Ian. The other audiologist I saw there was abrasive and not understanding of hyperacusis at all, and was pushing (in a very rude way) to test frequencies I knew were hyperactive at the time. I of course walked out, and waited the extra week to see Ian.

Without insurance, the audiogram is $150, which includes the high frequency component. I’m not sure if there was an extra charge for the appointment, but I don’t believe so.

 

Ian at least was very understanding. Basically explained I wanted to see if I had any notches at the higher frequencies, and he said “no problem!”.

Didn’t grill me at all.

 

I’m also worried about this too. I think most likely your ENT will let you if they want money from you. They will never reject a paying customer.

 

Yeah assuming that they don’t do this because it doesn’t matter as in even if you do have hearing loss in those areas there’s not much they can do to help. You can still hear people just fine so it’s not like you’d benefit from hearing aids and there’s no cure for tinnitus so I can understand why they mainly focus on below 8 kHz. I just wish they’d stop telling people they don’t have hearing loss or damage. They definitely should refine their statements.

 

I hope so!! I will sell everything I own for my tinnitus to be gone. I could even cope with my hyperacusis and trigeminal burning, I’ll just wear ear plugs everywhere. Tinnitus is hell for me.

 

Awesome care! Happy they understood! What were the findings if you don’t mind sharing?

 

So that’s probably another few years post treatment for them to analyze data on this drug being used ONLY for tinnitus.

The good thing about this stuff is it dives deeper on the issue of tinnitus and is a step further into finding out more on how our ears work.

 

@HootOwl Thanks for the info. I live in the Los Angeles area. Seems like it's near the Redondo Beach vicinity, which I just drove there two weeks ago.

 

I’m assuming there aren’t people in the trial who don’t have hearing loss under 8 kHz?
No one can prove that we have it or not but I can also see why doctors would be reluctant to administer the treatment. It’s one thing to have no loss and get tinnitus right after a concert or something. What about those of us for who it appeared super randomly but we do have a history of noise exposure?

It’s likely it is from noise but there’s a small chance it isn't.

 

Really, because I don't get that. It leads to weird numbers like 20% of tinnitus patients have no hearing loss, when they don't know, they only checked the lower bands. It's probably like only 5% or 10% don't have any hearing loss. Also, it's dishonest. If they treated all frequencies as important, it would raise more awareness.

 

True, and that's a great thing as well. I'm just saying that if you have an actual perfect audiogram and tinnitus then you either have hidden hearing loss, or you have moved past your tinnitus tone in terms of hearing, which at that point, the only thing that could help is something that deals with the brain's way of interpreting the noise, à la RL-81, or something that can regenerate hearing from flat epithelial.

 

I dont get it from an ethical sort of standpoint and like I said I do think they need to revise their statements because it’s very misleading. You get people walking out of the office thinking there’s no damage but there likely is. It’s dangerous because people might be less likely to protect their hearing once hearing there’s no damage vs if they’re told they have high frequency loss.

ENTs/overall medical care at least in the US is very profit oriented so I’m not at all surprised they don’t want to spend their time and resources on diagnoses that they wouldn’t be able to profit off of.

Will be interesting to see if FX-322 does show that outer hair cell damage does matter and does cause tinnitus, how many of these offices will offer this sort of testing if it means an extra $5k profit from each patient they see.

 

I honestly think it's more of an ignorance problem than an ethics problem. I once saw a very high level doctor with training in surgery, otology, neurotology. When I presented with severe hyperacusis, he looked at me like I was insane for suggesting hidden hearing loss. I explained to him the theory and he looked at my (non-extended) audiogram and looked perplexed over my theory (not even mine) of increased central gain to compensate for hearing loss. It can't be overstated enough how little ENTs understand these conditions. Hopefully, FX-322 could have a domino effect where it helps people with hearing loss in the 16 kHz range and then the theory becomes more understood. I really think ENTs don't do 16 kHz because they don't understand why someone would need this range most of the time.