Brainstorm on Political Lobbying and Regulatory Change

I'm a "conspiracy theorist". Does that help?

 

Can't really help, but I found Sun Tzu always quite stimulating when thinking about plans and what you need to keep in mind to win at something.
http://classics.mit.edu/Tzu/artwar.html

 

I am quite knowledgeable about the Swedish healthcare system now that I've had to navigate its corridors a lot in the years.

In Sweden it is usually not too complicated to get a hold of personal details of various politicians.
If you make me a tinnitus-ambassador or something I could probably send letters to the relevant people, or even call them on the phone if I get lucky.

I am also quite good at talking. If you need someone to read texts aloud I could probably do that fairly well too.

 

A couple thoughts:

Writing a couple letters won't do much because you're just a random nobody. I mean politicians probably get dozens of letter everyday about random problems. It changes however if many people (like dozens) write in coordination to politicians, so that many get letters at the same time. 'cause they then might talk about it with each other, which makes them remember it better. It would even be better if you have official tinnitus hub letters because an organization always carries more weight than the voice of a random invididual. It is a lot about presentation. Then when you write letters, you need to find a not too obvious way to keep in touch with that politician cause otherwise he'll forget about you. You repeat your problem over and over again. Because people learn primarily by repetition. Also if you keep going that shows determination. A lobbying campaign is a marathon that goes and goes on. You have to keep at it.
And you have to form a sort of a connection to the politican. Most politicians have websites and have speeches on youtube, so you can probably imagine sort of a personality. Try to make a connection to them. Because people always like people that are similar to them, and that makes you stick in their memory. Lobbying to me seems like a job application. So you have to stick out. And sticking out means as I've said: Quantity (many letters, repeatetly), status (organization, even if just for the looks), nice writing, similarity to the politician, sells good things (see below). And choose a fitting politician.

Next thing is what arguments do you use. Or in other words, what can we sell to politicians (we can't sell goods, but feelings):
- pity (please help us). Helping pitiful people makes most people feel good (however you have to tell them how much you thank them!)
- pride (make the politician a hero for fighting for all us sufferers)
- economics (tinnitus causes hundreds of millions to billions of dollars/euros damage each year, there's statistics for that; this is an argument for pragmatists)
- greed, if you have the necessary money to invest into a politician. This is mostly out of question because tinnitus hub has little money as far as I know.
- couple more arguments I haven't thought about

Based on the arguments, you select your desired politician. Since we cannot use greed, a good fraction of neo-liberals wont care about you. You might win some pragmatists though with the economics argument. Pride and pity might work more for leftists, seems to be more their thing. The pity argument probably works best if you can find a politician who had to go through serious hardships too. Of course we compete with other problems like cancer, obesity, etc., that also cause high economic damage and suffering.
What is our goal? Funding. Not awareness, that doesn't help much by itself (and awareness fades eventually, unlike cold hard coin). There's also no reason to ask a state to create a new company to research tinnitus (these already exist in private market). But the money can help universities to further research. Or ask them to invest into companies like audion, decibel therapeutics, whatever. The state might even make money if it's a break through (yes, that's another argument, but to me it's more one for a follow-up writing; don't blow all your steam in one go.).

 

This is where I feel being an official messenger on an international level would be great.

 

A few thoughts. I agree with all points above, but I think it would make even stronger of an impression if we could gather enough signatures and create awareness in other ways as well.

Some ideas:
- A petition with a lot of signatures. Someone linked a petition for signatures for the BTA recently on Facebook. I have yet to see one for US-based citizens. Could such a petition be created and could we gather say 100,000 or more signatures?? The ones I see on online have all closed and do not have enough signatures for the type of impact that we need
- Creating visibility for the disease. For other diseases this is done via colored ribbons or wristbands or even tattoos (for instance the semicolon tattoo to symbolize overcoming mental illness, or the pineapple to symbolize infertility struggles). ALS had the Ice Bucket Challenge that got people talking about ALS - many of whom didn't know what it was. What if we had some type of video challenge? I'm not saying we need to create our own tattoo, but the idea of having a token that encourages curiosity for sparking a conversation around the topic I think is very helpful towards spreading awareness. A short video would also be good to put actual faces and personal struggles to the petitions and emails.
- Email templates to send to our local representatives and politicians. Most people don't have the time to email their local representatives or even to figure out who their local representatives are who have the authority to impact funding for tinnitus. A better idea would be to create written email templates addressed to the politicians that need to be reached in each locale. That way all you would need to is to have members copy-paste the template and send it from their email. The impact of hundreds of the same emails coming from different people is still stronger than 1 very well crafted email coming from one person.
- Circulate the petitions and possibly email templates to the right groups. Do not limit ourselves to Tinnitus Talk as this gives us the greatest chance of gathering the most signatures. For instance, we should reach out to various veterans groups as we know veterans have the highest rate of tinnitus and hearing loss, and at least in the US this is a HUGE group of people. We could reach out to unions of occupations that are most likely to cause tinnitus, cancer survivor groups for people receiving ototoxic chemo treatment, etc. Working with other groups could also build our network and visibility and ultimately send a stronger, more united message to politicians and healthcare organizations.

I think if we were able to do some or all of the above then that also will give us more leverage for items 2) and 3).

 

Take a look at the lapel buttons BTA is making available and let us know what you think. If this becomes popular in the BTA perhaps BTA and Tinnitus Hub could help spread its use in Continental Europe thru its TRI contacts.

I've seen what you describe work very effectively in the city where I live.

My sense is that scale and timing are important for this strategy to work. For example in the US, I think we need to understand how and when information is gathered for formulating the national budget. So if we were to lobby for more money for tinnitus research, we need to understand the pathway which leads to increasing that number in the national budget. I'm making an semi-educated guess that it would start with the NIDCD (National Institute on Deafness and Other Communication Disorders) proceed thru NIH and then into the legislature and finally to the president. So we need to understand when NIDCD starts considering the amount of money that will be needed for research and what it will recommend to NIH. Specifically we need to know are the people we need to influence, when and how.

Lobbying for better healthcare for US citizens with tinnitus may be a completely separate path and maybe would start with Medicare???

With help and advice from @ChrisBoyMonkey, I've started by making contact with one of the veterans groups here in the US. They want to know more and have invited me to make a presentation about Tinnitus Hub to some of their volunteers in January. I've accepted and am really, really excited about it. As Hazel said, this will take time, but there is no better time to start than the present.

So guys, you are making some really great suggestions. I'd really like to start a working group to explore the issue of lobbying for better tinnitus care in more detail. Ideally it would be great to have people from other countries join the group so that we can explore whether or not the pathway is more straightforward in one place over another. If it is we might try there first and learn what issues we might face in larger, more complex governments like the US.

If you are interested and willing to commit a little of your time, please let myself, Hazel or Markku know - together, we can make a difference!

Many Thanks, TC

 

@TuxedoCat That is wonderful, and thank you for your time and dedication to doing this! I think a working group is a great idea. Feel free to contact me directly if this moves forward. Also, I did a quick google search for the BTA lapel buttons but didn't come up with anything.

@Hazel yes this is so true. The ask should be as specific as possible in order to have impact.

That must have been so frustrating! I can understand not wanting your face shown though. What about something less invasive like collecting personal testimonies? I notice people write a lot here about their personal struggles, if they were to simply write the same thing but give us the permission to collect and collate these stories with their signature or something and send them or read them aloud to the people who could make a difference, I think that would be quite valuable still.

 

Here you go - This is the link from BTA's Facebook page - https://www.tinnitus.org.uk/shop/tinnitus-badge-pack-of-3

 

@Markku, @Hazel - I'd love to wear a Tinnitus Hub lapel pin when I speak with the US veterans group. Maybe some to give out, too and a informational brochure might be nice. I can probably have them made here, but the design and graphics would be up to you! Thoughts?

Maybe you have them already for the Expo?

 

Found this newsletter in my audiologist's office. It has some useful contact info for hearing loss related organizations in the US. And some info on local legislation that’s being introduced in CA. Attaching in case it may be useful for outreach efforts down the road.

Sorry for the poor quality of some images - phone camera.

 

https://www.ata.org/news/press-rele...innitus-part-our-national-commitment-veterans

As may have been noted elsewhere, the American military paid out $1.2 billion dollars in tinnitus related compensation to veterans in 2012 alone.

According to my math, that's just over $1200 per claim that year. A lousy $1200.

I've told my wife we could win the lottery and I wouldn't care. I just want my life back.

@TuxedoCat This may be controversial, but imagine if we could inspire the vets to take that compensation money and put it towards a cure. That would have serious impact on research.

 

The Department of Defense funds tinnitus research. You may recall that Professor Tzounopoulos received a $2 million dollar grant from the DOD. Over the next few months, I'll be searching around to see how much DOD spends annually on tinnitus research.

I've made contact with Disabled Veterans of America and they have invited me to make a presentation about Tinnitus Hub/Talk to their Service Officers in Florida. That will take place in January.

Fundraising on the scale you mention is really not a remit of Tinnitus Hub/Talk. However, the US Veterans Associations are powerful when it comes to lobbying. Their voice may be a good tool for getting noticed in Congress and elsewhere.

We are about to start on the journey, however, we are miles and miles away from that possibility right now.

TC

 

I applaud them for that 2 million, but being that they're paying out billions in compensation for tinnitus suffering, that's a drop in the bucket.

The way I see it, if you're truly suffering, $1200 of compensation isn't going to change a thing. If veteran tinnitus sufferers who were receiving compensation could be inspired to collectively put that money into research, the effects would be very real. Even if it made failed attempts, at least those would be documented efforts in this great battle against tinnitus.

I recognize that may seem controversial. I don't mean to take away anything from their real suffering. I have veterans in my family (tinnitus as well). It's just that we'd be doing everyone a much bigger service putting real money into finding a cure.

Anyway, I guess I'm alone in that thinking.

 

I suspect that DoD is spending A LOT more on tinnitus research, I just don't have the actual figure.

I don't disagree. I actually believe that the situation with tinnitus research and funding should be explained to anyone who develops tinnitus and they should be encouraged to donate what they can towards finding a cure.

So, eventually and ultimately we may get that message out to veterans via their organizations' newsletters or publications. And we will need to give them information about programs to which they can donate. That means we will have to do some due diligence.

But, right now we have a foot in the door with one veteran's association. And, before I was invited to speak to that organization at the state level, the VSO asked me if it will cost the veteran anything. I answered carefully that Tinnitus Hub is an all volunteer organization and there is no cost to come to the forum. In my presentation I will touch on how to become a Benefactor or Patron.

You are not alone in your thinking. But far as inspiring goes, if you were around for the Danny Boy fundraiser you will appreciate how difficult it was and how much effort was put forth to raise money. The goal had to be adjusted down from the original goal in order to bring closure. Others before you have said, 'if everyone with tinnitus gave 1 dollar or pound or whatever the currency, millions would be available for research'.

I've witnessed one member here go to other Facebook groups and try to convince everyone to donate a little to research with no success. A couple of members here have even paid for Facebook ads in an attempt to get people to donate towards research and altho many flocked to their Facebook pages, jabbered away about their tinnitus, but none donated to the cause.

It's just not that easy.

 

This is good.

Could you list what you are going to talk about?

 

I can definitely see your point. I do personally know some that have tinnitus and it's just "not a big deal" to them because they have it mild enough it doesn't bother them.

I think if a vet is suffering from it to the point of receiving disability compensation, they're going to be much more willing to donate towards a cure. Even if we could just make a pamphlet available with every compensation check that's mailed out which gives the option to donate even 1 dollar of their $1200, that could be impactful among the millions who receive compensation.

Of course I would be skeptical when presented with that - where's my money going and is it going to actually be used in real research. Perhaps several companies or researchers could be identified with their current efforts and they could choose who it goes to.

 

Unless we can get the ATA fully on board to start basically harassing the FDA and their counterparts at Frequency Therapeutics, Decibel Therapeutics, Otonomy, etc to rapidly accelerate and expand access to certain drugs and be more forthcoming with information then we are probably facing years and years and years of waiting while our lives slowly waste away. At least people that get tinnitus in the future will potentially have a remedy.

 

I met another vet today who also just happens to have tinnitus. It doesn't bother him as badly as it does for me. Said it didn't come from a specific event, but years of riding in helicopters. He's in his 30s by the way. Said he just needs to sleep with a fan noise every night. It certainly affects us all differently.

 

@Hazel, from what I've read on the Regain thread, there are second hand anecdotes that restoring hearing successfully treated tinnitus and hyperacusis. I see no reason to fully doubt that. Shouldn't our target be accelerated access to this technology be it from Regain or Frequency Therapeutics?

The evidence is emerging and these things could very well be the breakthrough that gives us a way to salvage our destroyed lives. Just look at the young kids on this website. They sit at home wasting away emotionally and mentally.

Wouldn't a good first step be to convince the BTA and thus the ATA to start promoting awareness of this? If this is in fact the treatment we've all so long sought after, then we still have about 4 years at least before we will be allowed access at the current rate of trial progress. By then, so many of us will have lost so much of our precious lives, if not out lives entirely.

The only thing I know to do is to go up the food chain to the big players, the BTA and ATA.

 

The only thing about the companies doing it would be the perceived conflict of interest. The only other thing I would think would be us forming a protest march in Washington D.C. at the FDA but we wouldn't be able to use bullhorns because of hyperacusis and the people would just be looking at us out of their windows wondering who we were.

So, yeah, I don't really know how to do this at all. I'm not knowledgable about community organizing.
LaGuinn Sherlock (ATA) would be a really good person to get on board with this because she is from the Veteran's Administration and could probably rally support for an FDA rule change for this. I could write her a letter but I doubt I would even get a response.

I was thinking about the American right to try laws, and how they are focused on terminal illnesses and thinking that there are fates worse than death, like having very loud debilitating tinnitus.

 

@Hazel, look at the DUMBER than DUMB public spokespeople that the ATA and BTA have. Perhaps Tinnitus Hub could use a spokesperson/spokespeople? A good one would be a disabled veteran, as well as that girl that got blasted by her friend's dad with an airhorn, Cindy Redmond.

 

Pharma/device lobbying is superbly powerful and effective both sides of the Atlantic. And dark. But it's the big mega rich companies who do the effective lobbying. Those developing therapeutics you mention - are those all small companies or are any produced as spin offs of large powerful companies? Apart from covert too-powerful lobbying another thing drug/device giants are criticised for these days is a relative lack of funding of original research. They spend more on marketing now than on research, or on things like me-too copycat drugs where they can make easy money. That is a problem for conditions like tinnitus where the basic research is lacking (there's so little knowledge about what causes it).

This is a guess but it's also likely smaller companies spend less money trying to spin their results than big ones do, less on Key Opinion Leader doctors, ghostwriters in the medical literature, etc, which will mean their drugs/devices are less likely to get approved quickly. They won't have the money to do it or to litigate to protect themselves if the side effects are high.

 

So, if these gamma secretase hair cell regeneration drugs are the "cure". What is the pathway forward? Just wait?

 

So these new therapies you mention John - the FX-322, gamma secretase targeted inhibitor etc - which companies are producing them? Are they small start ups, healthcare giants, spin outs from unis or from big companies? It's relevant to the thread I think re lobbying.