"I Would Not Believe Anyone Who Says That a Cure Is Just Around the Corner"

[Raindance74]

I had a conversation with Dr. Stefan Heller from Stanford University's renowned Initiative on Hearing Loss and he told me that my previous estimates of clinical trials by the year 2020 (based off of lead Otolarengolist Dr. Jackler's own prediction) are not realistic. I won't go into our exact conversation but maybe I had my hopes up too high for seeing a cure in our lifetime (and I'm still in my 30s). His quote is below:

"Frankly, and realistically, I would not believe anyone who says that a cure is just around the corner. It requires more people working on these issues, and of course, more resources. please do not expect something magic to happen - this field is simply too small, too few people working in it, and funding is declining. I am optimistic, but we all need to remain realistic."

 

[lapidus]

But was he only refering to hair cell regeneration or all types of research? What was his opinons on the pottasium channel approach? Or DBS?

 

[Aaron]

I had a conversation with Dr. Stefan Heller from Stanford University's renowned Initiative on Hearing Loss and he told me that my previous estimates of clinical trials by the year 2020 (based off of lead Otolarengolist Dr. Jackler's own prediction) are not realistic. I won't go into our exact conversation but maybe I had my hopes up too high for seeing a cure in our lifetime (and I'm still in my 30s). His quote is below:

Hi,

I talked to him a lot via emails. He, and Albert Edge from Harvard have different attitude. Heller seems to be more realistic while Edge is more optimistic. But since the HRP from Hearing Health Foundation has a very detailed plan for their 10 year track, maybe it is okay to predict 10-15 years.

Anyway, it is not around the corner right now.

 

[RaZaH]

Thats kind of depressing.

 

[attheedgeofscience]

I had a conversation with Dr. Stefan Heller from Stanford University's renowned Initiative on Hearing Loss and he told me that my previous estimates of clinical trials by the year 2020 (based off of lead Otolarengolist Dr. Jackler's own prediction) are not realistic. I won't go into our exact conversation but maybe I had my hopes up too high for seeing a cure in our lifetime (and I'm still in my 30s). His quote is below:

For a start, let's be specific about what pathology the term "cure" is applied to: hearing loss or tinnitus?

Secondly, let's try to be specific about what is meant by a "cure": does it mean a total reversal of all tinnitus symptoms and full restoration of hearing loss? Remember, most things in medicine are not perfect. As an example, if someone has a broken knee, then, post knee surgery, the condition of the patient will usually not return to 100%. So we shouldn't apply the same standards of perfection to hearing loss and tinnitus, either.

As for when there will be a "cure" - either partial or full - for hearing loss and tinnitus, this could realistically be within the 3-4 years (best case) or within the next 10 years (worst case). Agreed these cures will not be 100% and may not work in all cases, but there will be something available to the "mass market" in the next decade. There is a lot going on in the field of otology; I have previously posted the market analysis information found in the attachment (there are at least 8-9 initiatives at the moment).

As for myself, I have already managed to reverse sensorineural hearing loss of up to 25db, and another stem cell pioneer with more hearing loss than me restored up to 35db of hearing loss. And that's with today's technology. So it all depends how you look at it.

Full restoration of hearing threshold will probably not be available until many years from now. Agreed. But there will be inner ear therapies available in the next decade (to the mass market). The researchers of Stanford are a typical example of the elitist pure researcher; they have no clue what is going on in the real (business) world around them. Just look the attachment below - and I am usually someone who errs on the side of caution.

 

[attheedgeofscience]

I had a conversation with Dr. Stefan Heller from Stanford University's renowned Initiative on Hearing Loss and he told me that my previous estimates of clinical trials by the year 2020 (based off of lead Otolarengolist Dr. Jackler's own prediction) are not realistic. I won't go into our exact conversation but maybe I had my hopes up too high for seeing a cure in our lifetime (and I'm still in my 30s). His quote is below:

...And another thing from your quote from the professor: "too few people working on it, and funding is declining". Actually, funding has never been larger! When I did my market analysis in the post above, I quickly eyeballed the sums going into inner ear therapies at the moment, and I would easily put that sum at a ½-billion dollars or more (and there is more to come if the various companies meet their so-called milestones; milestones trigger a release of further funding, usually - that's how initiatives are funded...).

Perhaps from his perspective, funding is declining - just like it is with the ATA. If anything, that is "proof-of-concept", of how irrelevant the pure researchers are at their job. Hell, I hold a degree in financial mathematics - and not medicine, and still I have managed to reverse hearing loss by 25db, so it makes you wonder what these guys are actually doing when they are "working". Or whatever it is they are doing...

 

[Grace]

Does he know about all the drug companies trying to cure this too? Hes probably just mad cause there ten year goal isnt possible but hearing loss will take awhile but maybe not T

 

[Aaron]

...And another thing from your quote from the professor: "too few people working on it, and funding is declining". Actually, funding has never been larger! When I did my market analysis in the post above, I quickly eyeballed the sums going into inner ear therapies at the moment, and I would easily put that sum at a ½-billion dollars or more (and there is more to come if the various companies meet their so-called milestones; milestones trigger a release of further funding, usually - that's how initiatives are funded...).

Perhaps from his perspective, funding is declining - just like it is with the ATA. If anything, that is "proof-of-concept", of how irrelevant the pure researchers are at their job. Hell, I hold a degree in financial mathematics - and not medicine, and still I have managed to reverse hearing loss by 25db, so it makes you wonder what these guys are actually doing when they are "working". Or whatever it is they are doing...

Hi,

Haven't talked for a long time!~

In fact, 99% of the scientists in the small circle of hair cell regeneration didn't pay any attention to tinnitus. To be honest, they don't know that Tinnitus is even a much larger market than hearing loss itself.

And I really don't think that hearing loss and T will be cured at the same time. If T could only be cured until they can even cure hearing loss, then the only reason will be lack of attention, both scientific and money wise.

However, based on our knowledge, it is not the case. At least a lot of companies are throwing money into this market.

 

[cullenbohannon]

I think anyone who gets to down about these comments need to see @attheedgeofscience posts above, very good points. Also like others above referred to, the work being done by autifony regarding potassium channels. Unless he addressed the potassium channels I have no reason to take these opinions seriously.

 

[attheedgeofscience]

Hi,

Haven't talked for a long time!~

Hello Aaron, indeed it's been quite a while. I will see if I cannot find the time to update you guys in the "offline group" with a bit more information in the near future. I actually do have a bit of information to share with you guys, but I have been attempting to get some 0 - 16 kHz audiograms done before doing any more updates. Not possible, however - can you believe that in all of Germany, there is not a single place where they will do such audiograms? The best I can get is 0 - 12,5 kHz, and the audiometric setting is not very good (so the result is unreliable for "scientific" purposes). I did mention to the assistant at the ENT clinic, Acquaklinik, I went to that "I thought Germany was a modern country". I don't think she understood the joke. But, then again, it wasn't really a joke...

And I really don't think that hearing loss and T will be cured at the same time. If T could only be cured until they can even cure hearing loss, then the only reason will be lack of attention, both scientific and money wise.

I agree that there is an overlap between the two, but not a perfect overlap - as you indicate. It is also difficult to estimate the impact of the work that the pioneers of potassium channel modulators are involved in (ie. Autifony). They claim that the compound "X" (Hydantoin "derivatives") they have developed will not only improve/eliminiate tinnitus, but also have an impact on hearing loss. I always understood hearing loss to be related specifically to the condition of the stereocilia in the cochlea and the auditory nerve (= the field of regenerative medicine). But there are other aspects to this apparently! I have known this for some time, but never really looked into it...

Autifony are also more secretive about their "product" - as well as in terms of disclosing treatment protocol information. There are several patent papers available online (here is one: www.freepatentsonline.com/y2014/0107139.html) but it is seriously complicated reading. And at the end of the day, I have to remind myself that I am a patient - and not a researcher. It is not my "job" to understand these things! Actually, that is my general practitioner's job - but, I am not sure that I would want to leave that in her "capable hands"...

Take care.

 

[tomytl]

I had a conversation with Dr. Stefan Heller from Stanford University's renowned Initiative on Hearing Loss and he told me that my previous estimates of clinical trials by the year 2020 (based off of lead Otolarengolist Dr. Jackler's own prediction) are not realistic. I won't go into our exact conversation but maybe I had my hopes up too high for seeing a cure in our lifetime (and I'm still in my 30s). His quote is below:

Hi,

if we speak about hair cell regeneration in the inner ear, nobody can seriously predict when and if the big breakthrough will happen. Ofcourse, there are some timetables like the Stanford Inititative to Cure Hearing Loss,
The Hearing Health Foundation and Action on Hearing Loss. This projects are very important and push the field.
I started "researching" about hair cell regeneration in 2003. At this time, it was hard to find informations about
"hair cell regeneration". Today, there is much more information available.
Ofcourse, there is still no cure for the masses on the market, but labs,companies and people working on this have increased over the past years.
In 2005, some researchers could the first time regrow some hair cells in mammals with Atoh1 approach, this approach will be tested in human trial led by Novartis this year. This trial is called "proof of concept", so we can't expect some miracles, but it could be an important step where scientist can optimize further therapies.

ATEOS thoughts about "cure" are completly right.
In my case an increase in some frequencies between 20-30db would be a cure and I would be completly happy.
The same wouldn't be a cure for a deaf person at all. So I also think there will be different approaches and outcomes for different kinds of hearing losses and also Tinnitus.

I guess the estimations of Stefan Heller are realistic. He has an excellent understanding about inner ear biology. Further he is also exchanging informations with other top scientists of this field.
For a scientist it's always difficult to make statements. In one way they need to be very optimistic to raise money, in the other hand they have to be careful giving expectations to people like us.

While I'm also sad about " no cure arround the corner" I'm still optimistic, that there will be some relief on hearing loss/tinnitus/hyperacusis in our life time. (I'm 39)...

At the moment, I put much hope in this 2 companies:
http://www.acousia.com/
http://www.audiontherapeutics.com/

Greets Tom

 

[NeoM]

Heller is right though. I think I remember reading that a researcher in his lab was denied an NIH grant. Also I've read of other scientists complaining that too much time is spent grant writing as opposed to doing research.

"Right around the corner" which translates to me, within the next couple of years, is I think wrong. I think if more trials can come about by 2030 than a serious treatment or cure might be available within our lifetimes.

A lot of companies list hearing loss drugs or whatever on their site, but who knows how much serious research they are doing on it. I realize there's a huge upside to get a treatment or cure, even moreso if it's a pill as opposed to surgery, so who knows.

 

[dan]

If he doesn't know about Potassium Channel research and tinnitus - he doesn't know shit.
Hell if we took a pool of 1000 tinnitus sufferers and gave them all Retigabine, who knows how many of them would be cured!
Saying a cure for tinnitus will not be found in the near future is ignorant and elitist view.

 

[Grace]

If he doesn't know about Potassium Channel research and tinnitus - he doesn't know shit.
Hell if we took a pool of 1000 tinnitus sufferers and gave them all Retigabine, who knows how many of them would be cured!
Saying a cure for tinnitus will not be found in the near future is ignorant and elitist view.

We need positivity and optimisim in the field and a non stop approach at curing this thing and definally not telling people its not around the corner cause life is too predictable with anything. My opinion we will see a cure for cancer in our lifetime and T will be alot sooner then that. I know a friend of the family who works on drugs to cure heart disease and she says there pill that there working on now will be out by 2023 and its gonna be a winner with curing/treating heart disease.

 

[NeoM]

If he doesn't know about Potassium Channel research and tinnitus - he doesn't know shit.
Hell if we took a pool of 1000 tinnitus sufferers and gave them all Retigabine, who knows how many of them would be cured!
Saying a cure for tinnitus will not be found in the near future is ignorant and elitist view.

The people at stanford and the HHF are primarily concerned with researching hearing loss.

 

[t-man]

Except there is more money and research being invested in this field now than ever.

 

[Erlend]

If he thinks funding is declining he obviously isn't very updated, in my opinion.

 

[Raindance74]

Hellers is a very smart person, but his opinion is based on the theory that the more we discover, the less we understand. Let me give you an example. My sister (who is a doctor) has stacks of medical journals dating back to the 1970's that I helped her organize one day at her house. I can't tell you how many had articles and even cover stories about how doctors were on the verge of curing everything from Parkinson's, Epilepsy, and even Alzheimer's disease I found while browsing through these journals. I even found a Time magazine from the early 90's with a cover story featuring the drug AZT with the headline "The cure for AIDS has arrived." My point (and Hellers) is twofold: 1) None of these medical conditions that have been researched for decades have been cured even though every six months for the last 40 years the medical community announced through sensationalistic journalism that they are "on the verge". Apparently that phrase means sometime before the end of time. And 2nd) tinnitus -and hearing loss, are not taken seriously by the fund raising community because they are not considered life threatening, unlike the diseases I mentioned above. I wrote a letter to Bill Gates back in 2012 asking for a donation on his behalf to the ATA and someone from his foundation sent me a letter back saying that "Mr. & Mrs Gates are actively only contributing funds for conditions that cause death or seriously disrupt the sense of well being for those who need them most. Unfortunately your requested cause is not listed in our database." They then sent me a chart showing the majority of funds (along with contributions from Warren Buffett) were going towards mosquito nets for children susceptible to contracting malaria in East Africa. There you go, this is why outside of our little circle of suffers, nobody really gives a crap about this condition until they have it themselves. I never even heard of tinnitus until I got it at age 35, and to my astonishment the three ENT doctors I went to had no idea how to even treat it, just saying I "had to learn to live with it" I remember thinking to myself "We can put people on the moon and build a space station, but we can't figure out how to get rid of a noise in my head" *smh

 

[EddyLee]

I think if there is treatment that could effectively and consistently reduce T volume even just temporary like a pain killer that's good enough, not necessary a cure. The problem with T is that there is no reliable control and that makes it so scary and unmanageable.

 

[t-man]

Hellers is a very smart person, but his opinion is based on the theory that the more we discover, the less we understand. Let me give you an example. My sister (who is a doctor) has stacks of medical journals dating back to the 1970's that I helped her organize one day at her house. I can't tell you how many had articles and even cover stories about how doctors were on the verge of curing everything from Parkinson's, Epilepsy, and even Alzheimer's disease I found while browsing through these journals. I even found a Time magazine from the early 90's with a cover story featuring the drug AZT with the headline "The cure for AIDS has arrived." My point (and Hellers) is twofold: 1) None of these medical conditions that have been researched for decades have been cured even though every six months for the last 40 years the medical community announced through sensationalistic journalism that they are "on the verge". Apparently that phrase means sometime before the end of time. And 2nd) tinnitus -and hearing loss, are not taken seriously by the fund raising community because they are not considered life threatening, unlike the diseases I mentioned above. I wrote a letter to Bill Gates back in 2012 asking for a donation on his behalf to the ATA and someone from his foundation sent me a letter back saying that "Mr. & Mrs Gates are actively only contributing funds for conditions that cause death or seriously disrupt the sense of well being for those who need them most. Unfortunately your requested cause is not listed in our database." They then sent me a chart showing the majority of funds (along with contributions from Warren Buffett) were going towards mosquito nets for children susceptible to contracting malaria in East Africa. There you go, this is why outside of our little circle of suffers, nobody really gives a crap about this condition until they have it themselves. I never even heard of tinnitus until I got it at age 35, and to my astonishment the three ENT doctors I went to had no idea how to even treat it, just saying I "had to learn to live with it" I remember thinking to myself "We can put people on the moon and build a space station, but we can't figure out how to get rid of a noise in my head" *smh

It doesn't help that every musician who vocally suffers from tinnitus just starts some lame foundation supporting hearing loss prevention instead of putting their money into curing the condition.

I'm looking at you Pete!

 

[jazz]

@Raindance74 Your post assumes we need to cure hearing loss in order to cure tinnitus. But this clearly isn't true. Over half the people with hearing loss do not get tinnitus. Hearing loss and tinnitus are not inextricably intertwined. Tinnitus is curable because it centered in your brain. Curing hearing loss necessitates regrowing hair cells.

I know I'm simplifying here. But drugs like AM-101 will prevent tinnitus from developing in predisposed people. And other medical interventions, like Autifony's new drug, will either cure tinnitus or make it so quiet it will no longer a problem in our lives.

I wrote a letter to Bill Gates back in 2012 asking for a donation on his behalf to the ATA and someone from his foundation sent me a letter back saying that "Mr. & Mrs Gates are actively only contributing funds for conditions that cause death or seriously disrupt the sense of well being for those who need them most. Unfortunately your requested cause is not listed in our database."

Well, this is not surprising. But why aren't more high profile musicians doing something, like Bono? What about something like benefit concert? That would be fantastic.

Anyway, thinking that tinnitus will be cured or significantly reduced for everyone in five years or less is not pipe dream. We have a real reason to be optimistic!

 

[Grace]

After reading your response.. Is it mean to say i hope bill gates gets T?! Cause if he did i bet a cure would be available next year lol that dude can stick all that money Up his ass .. We can find a cure without his part in it. Karma can be a bitch though...

Hellers is a very smart person, but his opinion is based on the theory that the more we discover, the less we understand. Let me give you an example. My sister (who is a doctor) has stacks of medical journals dating back to the 1970's that I helped her organize one day at her house. I can't tell you how many had articles and even cover stories about how doctors were on the verge of curing everything from Parkinson's, Epilepsy, and even Alzheimer's disease I found while browsing through these journals. I even found a Time magazine from the early 90's with a cover story featuring the drug AZT with the headline "The cure for AIDS has arrived." My point (and Hellers) is twofold: 1) None of these medical conditions that have been researched for decades have been cured even though every six months for the last 40 years the medical community announced through sensationalistic journalism that they are "on the verge". Apparently that phrase means sometime before the end of time. And 2nd) tinnitus -and hearing loss, are not taken seriously by the fund raising community because they are not considered life threatening, unlike the diseases I mentioned above. I wrote a letter to Bill Gates back in 2012 asking for a donation on his behalf to the ATA and someone from his foundation sent me a letter back saying that "Mr. & Mrs Gates are actively only contributing funds for conditions that cause death or seriously disrupt the sense of well being for those who need them most. Unfortunately your requested cause is not listed in our database." They then sent me a chart showing the majority of funds (along with contributions from Warren Buffett) were going towards mosquito nets for children susceptible to contracting malaria in East Africa. There you go, this is why outside of our little circle of suffers, nobody really gives a crap about this condition until they have it themselves. I never even heard of tinnitus until I got it at age 35, and to my astonishment the three ENT doctors I went to had no idea how to even treat it, just saying I "had to learn to live with it" I remember thinking to myself "We can put people on the moon and build a space station, but we can't figure out how to get rid of a noise in my head" *smh

 

[RichL]

I seem to recall having this argument with a certain Doc on this forum about this very statement.....Enough said!

Rich

 

[tomytl]

But we should not forget about the huge potential of profit a company can get by developing a "cure", something which get some relief for sufferers. This would be true for hearing loss as also for tinnitus.
Anyway, we have to wait until medicine in general reaches a new class of treatments. Many diseases are being treated to supress the sympthoms not to heal (regenerate) the damaged part.
We can hope i.e.,that gene therapy will reach level, where it's save and they can adress lots of problems.
But there is still hope, there are companies in Phase I,II,III trials!

 

[Raindance74]

"Hearing loss and tinnitus are not inextricably intertwined. Tinnitus is curable because it centered in your brain. Curing hearing loss necessitates regrowing hair cells."

I agree, but according to the ATA the majority of people with tinnitus also have some level of hearing loss (myself included). As far as getting famous musicians to donate, I used to work in the industry and have met many professional musicians who suffer from both tinnitus and hearing loss. When I asked a well known producer (who I wont name) who happens to also suffer from chronic tinnitus if he ever talks about it, he told me that it is considered career suicide to mention it for fear of losing work in an increasingly competitive industry, much how Michael J Fox was told by his manager to keep his mouth shout about his Parkinson's until he could no longer hide it so he could still get jobs. This is why I applaud Will.I.Am. for speaking out about his hearing loss. Pete Townsend has said recently that he cured his T using holistic natural methods, but I find that dubious at best. If you want a real treat, watch Metallica's interview on Howard Stern from last year, every member of that band has tinnitus and they talk about how terrible it is on the show. If just a few of these musicians contributed 1% of their earnings it would equal huge amounts of money. (Lars Ulrich is worth close to $100 million alone).

One more thing, Heller didn't mention potassium channels, but he did tell us not to hold our breath about companys like GenVec who are using gene delivery technology. Most of these companys lure investors with reports of successful Phase I trials which have data that can be easily misconstrued, and then go out of business or are sold off within three years. This of course is also complicated by active lobbying against a true cure by companys that would stand to lose huge profits such as everyone from Neuromonics to Phonak, the worlds largest maker of hearing aids. I remember when the University of Toyko announced a few years back they had successfully regrown human teeth using stem cells, who were the first people to complain?... the American Dental Association. Imagine instead of expensive drilling and crowns, you could just regrow that tooth again (something your body naturally does by itself anyway twice during your life). The whole dental industry would collapse.

 

[tomytl]

I agree, but according to the ATA the majority of people with tinnitus also have some level of hearing loss (myself included). As far as getting famous musicians to donate, I used to work in the industry and have met many professional musicians who suffer from both tinnitus and hearing loss. When I asked a well known producer (who I wont name) who happens to also suffer from chronic tinnitus if he ever talks about it, he told me that it is considered career suicide to mention it for fear of losing work in an increasingly competitive industry, much how Michael J Fox was told by his manager to keep his mouth shout about his Parkinson's until he could no longer hide it so he could still get jobs. This is why I applaud Will.I.Am. for speaking out about his hearing loss. Pete Townsend has said recently that he cured his T using holistic natural methods, but I find that dubious at best. If you want a real treat, watch Metallica's interview on Howard Stern from last year, every member of that band has tinnitus and they talk about how terrible it is on the show. If just a few of these musicians contributed 1% of their earnings it would equal huge amounts of money. (Lars Ulrich is worth close to $100 million alone).

One more thing, Heller didn't mention potassium channels, but he did tell us not to hold our breath about companys like GenVec who are using gene delivery technology. Most of these companys lure investors with reports of successful Phase I trials which have data that can be easily misconstrued, and then go out of business or are sold off within three years. This of course is also complicated by active lobbying against a true cure by companys that would stand to lose huge profits such as everyone from Neuromonics to Phonak, the worlds largest maker of hearing aids. I remember when the University of Toyko announced a few years back they had successfully regrown human teeth using stem cells, who were the first people to complain?... the American Dental Association. Imagine instead of expensive drilling and crowns, you could just regrow that tooth again (something your body naturally does by itself anyway twice during your life). The whole dental industry would collapse.

Once I saw a chart from hearing aid reseller amplifon how they see the future of hearing loss treatments.
It was interesting to see, that they also expect a "biological cure" in about 10-20 years. I don't think that at this point hearing aid companies can activly break research on hearing loss and tinnitus, they are "mini" compared to the pharma. On the other hand, the pharma would probably go for medication who needs to be taken during a long period or always.

 

[Hudson]

I've never known of academic researchers to say they have too much money. In fact, I've never heard of any researcher saying they have to much money. They always complain they don't have enough to generate more funding. It's part of the game. Writing grants is also part of the game.

 

[tomytl]

I've never known of academic researchers to say they have too much money. In fact, I've never heard of any researcher saying they have to much money. They always complain they don't have enough to generate more funding. It's part of the game. Writing grants is also part of the game.

But for Stefan Heller's plan to screen all the genomic databases he needs top notch researchers and they are
not many of this bioinformatic people. So they are very expensive to hire.
Pharma's have much more money, according to the following article, Novartis invested 500 Mio in Atoh1 research.
It's just the question, if Atoh1 is only used for inner ear treatments, I don't know.

http://journals.lww.com/thehearingj...ser_to_a_Gene_Therapy_for_Hearing_Loss.6.aspx

 

[NeoM]

I've never known of academic researchers to say they have too much money. In fact, I've never heard of any researcher saying they have to much money. They always complain they don't have enough to generate more funding. It's part of the game. Writing grants is also part of the game.

True. More money never hurts. I think the crux of their complaining is due to the sequester and the automatic cuts. Plus some of the people on that committee (congressional that is) are borderline IQ 15.

 

[tomytl]

Otonomy's new product's page sound also interesting:
New Products
We have a broad portfolio of issued and pending patents covering our current product candidates as well as other potential applications of our technology in major markets around the world. We will continue to evaluate new product opportunities to address significant unmet medical needs in otology. For example, one such area of great interest is the treatment of chronic hearing loss where considerable research in the field is underway to identify drugs that will preserve or improve hearing function.