BTA Refuses to Fund Drug and Stem Cell Research

[attheedgeofscience]

The following entity which is part of the DoD has a wide area of focus in relation to hearing loss and tinnitus:

http://hearing.health.mil/

If anyone, they would know what research efforts are being pursued. There is a lot of good information on the website. I would not - myself - be comfortable in reaching out to them, however; I am neither a US citizen, nor am I part of the US forces (current or veterans). I know this board has at least 3 current or former members of the armed forces - perhaps they have some experience/insight with the US system (I will tag them below).

I will need to leave this "exercise" of advancing tinnitus research & funding for "someone else" to pursue. I simply don't think much more can be done at this stage (for reasons I have already highlighted extensively in other posts eg. posts within this thread and in the threads named "Letters To Congress" and "Tinnitus and Chickenpox...").

@Relic Hunter
@Ken219
@dochoppy

Below a recent presentation from the HCE department - covering anything and everything from hearing loss policy to tinnitus research. There are statistics on page 5.

 

[Zimichael]

Geez ATEOS you sure come up with the most relevant stuff in any field! This info is incredible re the "military equation", for US anyhow. Great find and impressive from a brief skim through!

I see he has not been active recently but perhaps @Mark McDill could be added to the list of potential US citizens with military background...I feel that having that background would open more doors for credibility in approach, etc., etc.
Man it could be quite a task, but perhaps a productive one, to niggle away at the military avenues here to find someone who is "on it" and able to share approaches and ideas for tinnitus specifically. Like I wonder if someone in there knows about Autifony, and AM-101, and are watching them? (No hits in any searches there for either. Lots on Tinnitus though).

I have always thought that if the VA really gets behind a 'new treatment' option, then it would move faster, or at least force US insurance companies to accept that treatment in their "covered formulary/treatments" lists.

Best, Zimichael

 

[valeri]

@Zimichael

ATEOS is who we would need on any foundation or association board!

 

[SteveToHeal]

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

At 469 pounds per share - i might be able to afford one share! http://www.imperialinnovations.co.uk/ . Will be interesting to watch that share price as the Autifony trial plays out - perhaps an "inside view by proxy" on the success rate of the drug, before the actual results get released. Obviosly that would elude to insider trading or perhaps just consumer confidence but not a lot to go on, if no funny business going on. Just looked again and share price is in pence. So make that 469 pence. Ok so who's up for 100 shares? Sorry - well off topic.

 

[attheedgeofscience]

To those interested in advocacy, here is the follow-up from the EU's Directorate for Health and Consumers ("expand" the quote below).

My original post can be seen within this thread here:

https://www.tinnitustalk.com/thread...-drug-and-stem-cell-research.6599/#post-72413

Dear Mr Hansen,

Thank you for consulting DG Health and Consumer´s websites and your interest in health topics, in particular on hearing loss and tinnitus.

In response to your question I would like to inform you that DG SANCO´s health websites indeed do not specifically refer to or mention many relevant diseases which may require reactions from the regulatory side. This does nevertheless not imply that such topics are not adequately addressed at a European level. Please note that the list of relevant topics is not exhaustive.

For example hearing loss in young people arising from personal music players was identified as an important issue for consumers and action has been taken to develop European standards to limit exposure to high sound levels from personal music players:
http://ec.europa.eu/consumers/consumers_safety/product_safety_legislation/product_specific_issues/index_en.htm

Concerning the safety of services, noise levels at concerts etc. are clearly an important issue but requirements and initiatives on hearing loss or noise levels are a competence of the Member States. We are aware that some countries have provisions in their legislation (or in self-regulatory instruments they have in place) on noise levels related to certain services (nightclubs, etc.).

As regards the exposure of workers to noise at work, I would like to refer you to the relevant legislation, such as Directive 2003/10/EC of the European Parliament and of the Council on the minimum health and safety requirements regarding the exposure of workers to the risks arising from physical agents (noise), or Directive 86/188/EEC on the protection of workers from the risks related to exposure to noise at work. This directive had already set up inter alia noise exposure limit values for workers. Furthermore, work related to the health effects of noise has been undertaken by the European Agency for Safety and Health at Work:
https://osha.europa.eu

In this respect, also the website of DG Employment may provide you more interesting information on relevant legislation and scientific work:
http://ec.europa.eu/social/main.jsp

We hope you find this information useful. Please contact us again if you have other questions.

With kind regards,
EUROPE DIRECT Contact Centre
http://europa.eu - your shortcut to the EU!

Disclaimer
Please note that the information provided by EUROPE DIRECT is not legally binding.

I would like to thank the DG H&C for their response, but - as an example - identifying problems with hearing loss and tinnitus in teenagers in relation to portable music players is not the same thing as doing something about it. As a business manager myself, I am not rated on my ideas, I am rated on my ability to implement my ideas. This is also what they will teach you on the first day of business school.

But I mean no disrepect to the EU department; there are after all limits to their influence over member states.

What I would like to see by the end of 2014 is:

1) A semi-voluntary commitment from all concert organizers within the EU to provide earplugs along with entrance tickets.
2) That all schools within the EU should be informed and instructed to come up with a noise awareness programme for 2015 (most like the existing programmes for dental hygiene and sexual education).

Based on common sense experience with bureaucracy the above is obviously not going to happen. But as such, I cannot really see what the barriers are. All it takes is the will to do it. In simplistic terms, it would essentially just be a simple e-mail to the various health departments in members states with the instructions: "do this, do that, etc.".

Anyway, enough about all that!

 

[Markku]

identifying problems with hearing loss and tinnitus in teenagers in relation to portable music players is not the same thing as doing something about it.

They did do something about it after identifying the problem:

http://europa.eu/rapid/press-release_IP-09-1364_en.htm?locale=en

The mandate makes it clear that safe use depends on exposure time and volume levels. At 80 dB(A), exposure should be limited to 40 hours/week. At 89 dB(A) exposure should not exceed 5 hours/week.

The safe exposure levels defined above shall be the default settings on products. Higher exposure levels can be permitted, provided that they have been intentionally selected by the user and the product incorporates a reliable means to inform the user of the risks.

http://www.bbc.com/news/health-21294537 (from 2013)

All personal music players and mobile phones sold in the EU must now have a sound limit of 85 decibels (dB), but users can increase it to 100dB.

1) A semi-voluntary commitment from all concert organizers within the EU to provide earplugs along with entrance tickets.

Agreed. If only a ticket outlet such as Ticketmaster required the venues/organizers to offer earplugs to concertgoers... It wouldn't be that big of a deal if ticket prices had to increase by $1 because of that. That would be a significant first step in the right direction in my opinion.

I wonder if AoHL/BTA/ATA/etc have tried achieving this?

2) That all schools within the EU should be informed and instructed to come up with a noise awareness programme for 2015 (most like the existing programmes for dental hygiene and sexual education).

There was some talk about the dangers of noise exposure back when I was in school. Not nearly enough though. I don't remember tinnitus ever being mentioned. Only hearing loss.

I don't know why the EU doesn't try and push noise awareness more. I don't know why individual countries don't tend to do it either.

It shouldn't take that much effort (or money) to properly explain noise's effect, listen to some simulations of hearing loss and tinnitus, and how to be safe.

We got free condoms from the school. But not earplugs when we had school discos. And trust me, they were quite loud.

 

[attheedgeofscience]

They did do something about it after identifying the problem:

http://europa.eu/rapid/press-release_IP-09-1364_en.htm?locale=en

Thanks Markku for pointing that out. However, I pretty much stand by my original "accusation" as the EU link that you referred to - which was a link from the link I got from the EU - is a legislation proposal from 2009 (as far as I can tell).

I had not seen the BBC-link you provided as that was one you found by yourself?

(Incidently, that means it took them 3 years to implement the proposal - again, as far as I can tell - and even though, the proposal mentions 24 months, I think...).

I know several stories from people on this board who clearly got tinnitus from MP3 players (but they may have had the older versions of MP3 players or they chose to ignore the noise-limiting functionality, I guess).

All in all, I still feel that there is not enough awareness of noise at locations such as cinemas, night clubs, concerts, etc. Why can't there be at least a poster at the entrance of these places stating a health warning to consumers (a bit like the health warnings on cigarette packages)? I believe several of these locations would have posters referring to drugs and HIV and such things. But not noise exposure or risks.

And a location where there is lots of noise is at the fitness studios for the indoor cycling workouts and other sessions as well. At my studio, the music is crazy-loud; we can hear it all the way upstairs at the regular part of the fitness studio (which is also playing music at around 70db!). Think about the instructors who do several classes - per day!

I don't think I have ever seen a single health warning about noise risks on television here in Europe. I know the ATA has produced (and aired?) some video-clips in public.

Anyway, these are my thoughts about the matter.

If anybody else has any insights and/or thoughts on the matter, feel free to weigh-in, either way.