BTA Refuses to Fund Drug and Stem Cell Research

[david c]

The British Tinnitus Association has recently produced guidelines on its research strategy for the next six years (until 2020). See here:

http://www.tinnitus.org.uk/researchstrategy

Unfortunately the small print behind the usual marketing waffle makes for depressing reading. The key sentence in the whole document is the following:

"Whilst the BTA would like to support pharmacological studies and stem cell research, this is
currently outside its capability."

ie the BTA will not help fund any research into drug development or stem cell research - probably the two most promising avenues for future cure development- instead preferring to concentrate on the usual "management" strategies, which have already had a lot of research. While the BTA of course has limited funding, this very narrow approach to research is disappointing and sadly many of the people who donate to the BTA may not be aware of it.

Of course this only applies to the BTA and the situation may be different for tinnitus charities in other countries.

 

[Carloflogical]

I found that organisations like the BTA are useless, and all they want to offer is coping techniques.
Thanks for that BTA, but no thanks!!!
I sure I'm not alone on here when I say we all want a cure.
We all want to be able to go to bed at night and not hear the hissing or grinding in our ears, and wake up to the same sound.
People who don't have tinnitus will never appreciate the pain we have to through daily.
There isn't a day that goes by that I don't think about or say to myself the word tinnitus.
I don't think I've ever come across anything that has such a profound effect on my life.

Still onwards and upwards, stay strong T Warriors.........

Carl.

 

[david c]

I agree with a lot of what you say Carl. I'm all in favour of sharing coping techniques - whatever works for you etc - what I don't think we need is a lot more research done into coping techniques - there's already been a lot of research done and I don't think any of the recent research has broken new ground. Doing stem cell research and drug development are far greater priorities even if they are more difficult and it's really disappointing that the BTA isn't prepared to spend any money at all on them.

 

[LondonGirl]

I do agree but realistically they've probably only got a budget of about£2.50. I don't think US ATA has funded anything groundbreaking either. It's not a high profile or heart-wrenching cause; unless you've had it you probably have no idea how life destroying it can be. Like I wouldn't donate to ingrowing toenail research TBH, I think people who haven't had T would put it in similar category. May be cynical but generally money goes in when people think more money will come out ie big Pharma pile in when a research project starts to look promising.

 

[LondonGirl]

Ps no offence to ingrowing toe nail sufferers, I've had them and they are sodding painful! Gosh, I get all the glamorous diseases!

I do agree but realistically they've probably only got a budget of about£2.50. I don't think US ATA has funded anything groundbreaking either. It's not a high profile or heart-wrenching cause; unless you've had it you probably have no idea how life destroying it can be. Like I wouldn't donate to ingrowing toenail research TBH, I think people who haven't had T would put it in similar category. May be cynical but generally money goes in when people think more money will come out ie big Pharma pile in when a research project starts to look promising.

 

[Matthias]

I do agree but realistically they've probably only got a budget of about£2.50.

True, they probably have very limited funding. This kind of thing should be government funded.

 

[Danny Boy]

The British Tinnitus Association has recently produced guidelines on its research strategy for the next six years (until 2020). See here:

http://www.tinnitus.org.uk/researchstrategy

Unfortunately the small print behind the usual marketing waffle makes for depressing reading. The key sentence in the whole document is the following:

"Whilst the BTA would like to support pharmacological studies and stem cell research, this is
currently outside its capability."

ie the BTA will not help fund any research into drug development or stem cell research - probably the two most promising avenues for future cure development- instead preferring to concentrate on the usual "management" strategies, which have already had a lot of research. While the BTA of course has limited funding, this very narrow approach to research is disappointing and sadly many of the people who donate to the BTA may not be aware of it.

Of course this only applies to the BTA and the situation may be different for tinnitus charities in other countries.

Because BTA doesn't want to cure tinnitus, as they wouldn't exist if there was a cure.

 

[david c]

Completely agree about Matthias's point on gov funding and about what London Girl's said about things only really taking off on the drug development front when Big Pharma can see a return for them.

BTA's budget is pretty small but I think it's also a big problem that they have a "cosy" management structure where the limited research funding they do have always seems to go to buddies of their trustees - who are mainly involved with audiology products and all the CBT stuff - all of which has had a lot of research already.

Have to agree with your cynicism about BTA Danny Boy - it's very much a self-perpetuating oligarchy.

 

[Danny Boy]

Completely agree about Matthias's point on gov funding and about what London Girl's said about things only really taking off on the drug development front when Big Pharma can see a return for them.

BTA's budget is pretty small but I think it's also a big problem that they have a "cosy" management structure where the limited research funding they do have always seems to go to buddies of their trustees - who are mainly involved with audiology products and all the CBT stuff - all of which has had a lot of research already.

Have to agree with your cynicism about BTA Danny Boy - it's very much a self-perpetuating oligarchy.

I just forget about the BTA and focus on Autifony at the moment...I'd rather donate money to them.

 

[LondonGirl]

No need to donate, you can buy shares in them (Imperial Innovations). Then you win twice if the drug works.

I just forget about the BTA and focus on Autifony at the moment...I'd rather donate money to them.[/QUOT

 

[t-man]

These stupid foundations only exist to accept donations to fund lame quick-fix gimmick and to, of course, skim some of that sweet money off the top.

Seriously, make it be known to any public donators that they are a useless foundation and should have their gravy train derailed. Of course, many companies who actually donate probably just need a token charity to write off some of their taxes...

 

[Champ]

Because BTA doesn't want to cure tinnitus, as they wouldn't exist if there was a cure.

Pharma companies threaten them by researching a cure.

 

[RichL]

Because BTA doesn't want to cure tinnitus, as they wouldn't exist if there was a cure.

Spot on @Danny Boy , TRT and the likes wouldn't exist either!

 

[Magpie]

I just forget about the BTA and focus on Autifony at the moment...I'd rather donate money to them.

Why?

A. The QUIET-1 study is a clinical study to determine whether or not a new test drug, AUT00063, can reduce symptoms of tinnitus in comparison to a placebo (dummy drug) after 4 weeks of treatment


IMO if they ever find a drug that reduces tinnitus it will work almost immediately. You won't even need a placebo and stuff me WTF would Autifony need with a placebo if their test drug worked. It either works or it doesn't and judging by what I have read so far there seems to be a lot of hype about Autifony and a lot of people hanging on and hoping that it's going to be the magic cure which it ain't!

 

[t-man]

Even if this drug cures tinnitus immediately, it still has to be run though a placebo-controlled, blind study. You have to prove to the medical community, especially the FDA that your drug is effective in a controlled environment. This is done by utilizing a blind study on patients with unbiased doctors to rule out the placebo effect many humans often experience.

Also, tinnitus is not a binary condition as you make it out to be. There will be no one size fits all drug to treat the condition. It won't either work or not work, every case is unique. You see most of us here got tinnitus from more than rock concerts and jet engines.

 

[Steve]

The sad fact is that the cost of a proper clinical trial is way beyond the capability of any of the charities. I would love to see stem cell or other innovative research funded but it will never happen because they don't have the money. And if it did there would be strings attached so that the pharma running it could capitalise on any positive results.

I'm not sure I can buy into any conspiracy theories, the BTA really isn't very big. I think that their handful of staff (and it is a small handful) will have very little luck in suppressing a cure or seriously affecting research into one. It just isn't their thing, if you look at their website it's geared toward information and support

For me the problem is the system in general. The large corporations are the ones who have no interest in a cure, because that would be a one off thing. The strategy will no doubt be to give us a drug or some other form of dependance so that they can maximise return on their investment - this is the capitalist world we live in.

As @LondonGirl said, we don't have a heart wrenching cause so the funding available is incredibly limited. If we could galvanise people, get them all to agree on the treatment we want to research, fund it and manage the end product, well, then we would have something. At present we don't unfortunately.

 

[walkthroughwalls]

Unfortunately the small print behind the usual marketing waffle makes for depressing reading. The key sentence in the whole document is the following:

"Whilst the BTA would like to support pharmacological studies and stem cell research, this is
currently outside its capability."

What do they mean with 'outside its capability'? Can't they add their contribution to the existing stem cell-research aimed at curing tinnitus?

There may be a reason for not investing in stem cell-research, such as deciding that spending the money on prevention and support is more effective in reducing suffering, but actually stating what their considerations were might clear up a lot of confusion.

To add what Steve said, I remember reading a quote that went something like this: 'in a perfect world, all medical research would be funded without any hesitation, while the army has to go door to door to raise money to buy a new fighter jet.'

And oh, it's not a religious thing, is it?

 

[attheedgeofscience]

The British Tinnitus Association has recently produced guidelines on its research strategy for the next six years (until 2020). See here:

http://www.tinnitus.org.uk/researchstrategy

Unfortunately the small print behind the usual marketing waffle makes for depressing reading. The key sentence in the whole document is the following:

"Whilst the BTA would like to support pharmacological studies and stem cell research, this is
currently outside its capability."

ie the BTA will not help fund any research into drug development or stem cell research - probably the two most promising avenues for future cure development- instead preferring to concentrate on the usual "management" strategies, which have already had a lot of research. While the BTA of course has limited funding, this very narrow approach to research is disappointing and sadly many of the people who donate to the BTA may not be aware of it.

Of course this only applies to the BTA and the situation may be different for tinnitus charities in other countries.

A fair number of people probably feel the ATA and BTA are not producing worthwhile results. As I have mentioned a good number of times on this forum, the best thing tinnitus organizations can do with their limited budget would be to lobby the right people in government to create the momentum needed. At this stage, however, that momentum is largely irrelevant given that a ½-billion dollars has already been invested in the +10 pharmaceutical companies currently pursuing research into otology therapies. Three of these pharmas already have several of their pipelines in the post pre-clinical phase. Funding will therefore make no difference. What-so-ever.

What can make a difference is creating awareness about tinnitus and noise safety standards. Not to mention actual legislation on noise safety. Just this week, I had a review of the EU's current overall public health strategy:

http://ec.europa.eu/health/index_en.htm

Not really any mention of hearing loss and tinnitus. I have therefore written to the EU's Directorate for Health and Consumers to try to understand why that is - below the content of my letter:

Dear Health& Consumers,

I have had a brief review of the overall Health Commission's website, and I am slightly disappointed - but not surprised - to see that hearing loss prevention and tinnitus does not seem to have a more present role on the EU health agenda. The usual focus areas for public health seem to be smoking, alcohol, safe sex, and obesity. These are of course very relevant focus areas, but also what I would consider "common knowledge" - whereas hearing loss and tinnitus is not. Hearing loss is in roughly 90% of all cases a result of either short- or long-term noise exposure. And hence very preventable.

It seems to me that there are several "quick-win" or "low-hanging fruit" initiatives which are not being exploited.

Examples:

1) Lack of earplug handouts at concerts and festivals (ie. why not hand out a pair of earplugs along with the entrance ticket?).
2) Lack of ear protection awareness for the combat forces in combat situations (tinnitus disability payouts for veterans is the biggest item on the US disability list - and exceeds 1 billion dollars, annually)
3) Lack of double protection awareness (= earmuffs and earplugs) for people in extreme noise environments (eg. aircraft carriers, Formula One races, certain parts of airports, shooting ranges, construction workers doing concrete drilling, etc.)
4) Lack of TV campaigns (by the health authorities) concerning hearing protection, recommended maximum db-exposure, and tinnitus.
5) Lack of enforced noise quotas/limits at eg. concerts, cinemas, car shows, etc.
6) Noise awareness programmes in schools (current focus seems to be related to topics such as dental hygiene and sexual education).

It is well known that hearing loss amongst teenagers is on the increase. It is therefore disappointing to see that not more is done to prevent such a preventable "disease".

I am curious what the position of Health & Consumers is on this health topic.

Thank you for your time.

Sincere regards,
Jakob S. Hansen

I received a ticket number after my e-mail submission; I will report back on the outcome if it is worthwhile the space on this website.

I have a written a similar letter to the Hear-The-World-Foundation (www.hear-the-world.com/en/start.html) which actually has quite a number of celebrities supporting it (www.hear-the-world.com/en/about-us/ambassadors.html). Not sure why we don't see more hearing loss awareness with 70 ambassadors on the list - but admittedly the folks behind HTWF are involved in a lot more than just hearing loss prevention.

As for the ATA (and perhaps the BTA) - despite their so-called "scientific advisory board" - the results they have produced over the last decade reveals they are nothing more than an irrelevant coffee club (when it comes to research). Fortunately, there are (other) people in this world who know the difference between tangible and intangible results.

 

[OddV]

@attheedgeofscience I contacted the ATA to see if they knew if Auris Medical would provide AM-101 off trial or if they had a considerate use program... the response I got back (paraphrased) was "We are aware of the trials, you can contact them directly on your questions"

Seriously? They should KNOW every avenue available to tinnitus sufferers and help people advocate for themselves. To me, that response showed me that they are a failure.

 

[awbw8]

This is great @attheedgeofscience, if all of us here were taking these steps and writing letters, we would get some attention.

Would it be alright if I used parts of your letter to contact a few officials in the US? I do not believe we have the gusto in the tinnitus community in the US to use this resource at present, but it's a goal of mine to get a petition related to noise-induced hearing loss and accompanying legislation for prevention on "We The People" here in the states. If you get 100k signatures in 30 days, the US Government is required to respond. It doesn't necessarily mean change, but it's a step.

Thank you for being a person who reaches out.

 

[attheedgeofscience]

Would it be alright if I used parts of your letter to contact a few officials in the US?

Yes. But see this other post of mine, as well:

https://www.tinnitustalk.com/threads/letters-to-congress.6536/#post-72426

 

[david c]

The sad fact is that the cost of a proper clinical trial is way beyond the capability of any of the charities. I would love to see stem cell or other innovative research funded but it will never happen because they don't have the money. And if it did there would be strings attached so that the pharma running it could capitalise on any positive results.

I'm not sure I can buy into any conspiracy theories, the BTA really isn't very big. I think that their handful of staff (and it is a small handful) will have very little luck in suppressing a cure or seriously affecting research into one. It just isn't their thing, if you look at their website it's geared toward information and support

For me the problem is the system in general. The large corporations are the ones who have no interest in a cure, because that would be a one off thing. The strategy will no doubt be to give us a drug or some other form of dependance so that they can maximise return on their investment - this is the capitalist world we live in.

As @LondonGirl said, we don't have a heart wrenching cause so the funding available is incredibly limited. If we could galvanise people, get them all to agree on the treatment we want to research, fund it and manage the end product, well, then we would have something. At present we don't unfortunately.

I know that the BTA isn't that well-funded but the fact of the matter is they always seem to have money to support the research of their buddies in the audiology industry (who also happen to be on their board of trustees) producing yet another range of maskers or some CBT "management" strategy, (which we've loads of already). The BTA could at least give some of these grants instead to researchers for stem cell research and other research which is much more likely to lead to a long term cure. I don't think you need to be a conspiracy theorist to see that the last thing the audiology companies want to see is a long-term cure which would render their ineffective sound systems pointless.

 

[attheedgeofscience]

Would it be alright if I used parts of your letter to contact a few officials in the US? I do not believe we have the gusto in the tinnitus community in the US to use this resource at present, but it's a goal of mine to get a petition related to noise-induced hearing loss and accompanying legislation for prevention on "We The People" here in the states. If you get 100k signatures in 30 days, the US Government is required to respond. It doesn't necessarily mean change, but it's a step.

I should add that - after getting an e-mail from the staff of TT which indicated they "should reach out as well" - this is not about "bombarding" various government entities in order to create awareness. At least not from my perspective. This is about "getting things done". In the case of hearing loss prevention and awareness, getting things done can be achieved in a number of ways: you can contact the health authorities directly or you can directly engage the entities who have direct contact with the public (ie. you either address the top or the bottom of the organizational pyramid).

In my case, I will be contacting the Danish Health Authority in the coming week...

http://sundhedsstyrelsen.dk/da (= top of the pyramid)

...but, I will also be contacting one of the schools in Copenhagen (= bottom of the pyramid).

In the case of the US, the entity to contact would probably be the Surgeon General's office (although the US does not have a SG at the moment due to the (constant) fighting between Democrats and Republicans).

However, depending on which "party" (= schools, health authorities, labour unions, etc.) you are addressing, selling the argument can present a problem as this article illustrates:

http://www.telegraph.co.uk/news/ukn...r-health-and-safety-rules-landlords-told.html

In the case of schools and hearing loss prevention programmes, that may also present a challenge: for school representatives, it means more work having to integrate hearing loss awareness into the school curriculum and/or they may not even understand what the "problem" is to begin with (eg. "Tinnitus? What is that?!?"). But here's the thing: eventually, there will be one or two schools which will respond favourably. And once that happens, you can use those as future examples to other schools which are more "resistant". Sometimes, it may also make sense to team up with organizations such as HTWF.

Of course, the above concerns hearing loss & tinnitus prevention - which is quite different to tinnitus research funding.

Influencing tinnitus funding & research would require some pretty careful thinking about what exactly you want to achieve and how you want to achieve it. Simply writing to a politician, asking him/her to "do more", is useless. The politician in question would need to be supplied with some sort of roadmap describing the path to the desired solution (=endgame). And that roadmap needs to be realistic. Most politicians are not hearing loss and tinnitus experts - so cut them some slack - and present information in a digestible and meaninful way (eg. financial impact on society by refering to studies demonstrating savings that could be made by reducing hearing loss and/or disability rates amongst veterans). But sometimes getting things done is also a matter of chance and opportunity - select your politicians (= your "victims") with care. For instance, the former foreign and interior minister in the UK, Jack Straw, suffered a case of sudden hearing loss which did not recover - and he tinnitus as well as a result. So in the case of the UK, that is someone I would consider enlisting the help from...

The reason I contacted the EU Directorate for Health and Consumers, is because the items I listed in my e-mail to them are so-called "quick-wins" or "low hanging fruits" ie. initiatives which would be easy to implement (eg. earplugs at concerts). When I was a teenager in the early/mid 90s, I lived in Switzerland and we would go skiing every weekend during winter. Back then, nobody would use helmets. Today - some 20 years later - "everybody" wears a helmet. I hope that the same sort change in mentality will take place with regards to hearing loss. I also hope that it won't take 2o years.

 

[awbw8]

Hi @attheedgeofscience, I completely agree with you and I think this is a good post for everyone to read when they're considering writing or contacting anyone. Saying "do more" is not enough.

I am not really looking to bombard my politicians or to try and directly influence the level of funding for a cure. When I contact someone it will be strategically. I appreciate your thoughts/ideas/insights and am with you 100% on that front.

Finding a cure is very important (lord knows I would love a cure), but my heart lies more with prevention/awareness at present. I am one of those who, if my school had included anything in its curriculum about tinnitus or hearing loss, would have added earplugs to my safety arsenal and would not have tinnitus today. Of course there are many avenues through which to spread awareness other than schools, but that is one place.

So my thoughts echo yours when you wrote this:

Today - some 20 years later - "everybody" wears a helmet. I hope that the same sort change in mentality will take place with regards to hearing loss. I also hope that it won't take 2o years.

I also hope it won't take 20 years. Frankly though, if as many people wear earplugs to concerts in 20 years as wear seat belts in cars or helmets on bikes, I will consider that an achievement.

Thank you for your writings on this subject, I think it will help everyone here to think more strategically about their personal efforts and help those efforts bear more fruit.

 

[valeri]

@attheedgeofscience

I guess the above mentioned foundation (hear the world) is, in no way, concerned about tinnitus??

 

[david c]

@attheedgeofscience

I guess the above mentioned foundation (hear the world) is, in no way, concerned about tinnitus??

Not nearly as concerned about tinnitus as about helping their audiology industry buddies make yet more money out of tinnitus sufferers!

 

[Worker]

This condition is life changing and it it needs to be brought to the public s attention.

 

[Steve]

I know that the BTA isn't that well-funded but the fact of the matter is they always seem to have money to support the research of their buddies in the audiology industry (who also happen to be on their board of trustees) producing yet another range of maskers or some CBT "management" strategy, (which we've loads of already). The BTA could at least give some of these grants instead to researchers for stem cell research and other research which is much more likely to lead to a long term cure. I don't think you need to be a conspiracy theorist to see that the last thing the audiology companies want to see is a long-term cure which would render their ineffective sound systems pointless.

I totally agree with you in regard to the audiology companies. All pharma is pretty much the same, they are large PLC's that have continued profit at their core so must be able to produce something that will be profitable for years to come.

I think that with the limited resources, which we know will struggle to even make the smallest impact to a research project, I have to conclude the same as ATEOS. The most important thing that can be done is lobbying, awareness, getting our voices heard at a level where it can make a difference. If we can galvanise people into action and aim to bring together interested parties (such as the VA and DoD) then we can create a singular and very loud voice. We need change and we need to challenge the status quo of the medical community.

@valeri @david c Hear the World is a foundation started and managed by Sonova, owners of Phonak, Unitron, Connect Hearing and Advanced Bionics. Hearing instruments are their speciality. I don't know how much impact they have but there is most likely an element of tax-write-off /incentive driven involved in such a project, as it is part of their corporate social responsibility. Their main focus is to support children with hearing loss, providing them with equal opportunities as their non-impared friends.

 

[valeri]

The most important thing that can be done is lobbying, awareness, getting our voices heard at a level where it can make a difference. If we can galvanise people into action and aim to bring together interested parties (such as the VA and DoD) then we can create a singular and very loud voice. We need change and we need to challenge the status quo of the medical community.

Agree with you but how do we do it?

 

[Steve]

Agree with you but how do we do it?

We are working towards it, we need a platform and something more substantial than we have at the moment, something to help us draw people in and hopefully get endorsements from others who can drive the message home. We're starting development of our new site in the next couple of weeks, a part of that is a "make a difference" section that we'll use for things to raise awareness. It'll take around 3 months to develop, we're very open to ideas on what to feature in it.

We have over 40,000 unique visitors per month here, it's all about working out how to best involve them, to get people to stand up and do something. It needs to be easy, involve little or no commitment and be quick as most are up to 3 month stayers on here.