Getting More Funding for Tinnitus — Ideas Needed

[Greg Sacramento]

@Ed209 A short time back I posted that I was considering contacting two US Senators for placement of Tinnitus on the Federal Tax Return for $1 donations. There's 100 US Senators with two from each State.

I was able to talk to an aide of my US Senator who said it would be impossible as it now stands. He did note that tinnitus has high population numbers, but said that it's considered a condition. He added that some are not deliberated by it and others have it improve. He referred to NORD - National Organization of Rare Diseases. I checked yesterday and he's correct. I know that NORD is one of the sources that Social Security Disability Uses.

I'm very familiar with the two largest healthcare systems (hospitals, doctor offices, treatment centers) within California. One is State managed and the other is Non Profit for Profit. Both consider tinnitus as a condition that could have association to another condition or disease. Basically without a worded definition tinnitus can mean a class 2 condition to them. Not only does this bear on government funding, but medical priority and insurance coverage. I know that if one walks to an ER saying that they started to get ringing in the ears, they will often be placed low on the waiting treatment list. They will ask you on the sign-in if you have pain.

Forgive me for wording. I'm in serious facial and gum nerve pain tonight, but I need something to focus on. I'm also ringing very loud and some of that may be due to having back to back medical appointments tomorrow for other conditions.

Do you have any thoughts on how the system can be changed?

 

[Ed209]

@Ed209 A short time back I posted that I was considering contacting two US Senators for placement of Tinnitus on the Federal Tax Return for $1 donations. There's 100 US Senators with two from each State.

I was able to talk to an aide of my US Senator who said it would be impossible as it now stands. He did note that tinnitus has high population numbers, but said that it's considered a condition. He added that some are not deliberated by it and others have it improve. He referred to NORD - National Organization of Rare Diseases. I checked yesterday and he's correct. I know that NORD is one of the sources that Social Security Disability Uses.

I'm very familiar with the two largest healthcare systems (hospitals, doctor offices, treatment centers) within California. One is State managed and the other is Non Profit for Profit. Both consider tinnitus as a condition that could have association to another condition or disease. Basically without a worded definition tinnitus can mean a class 2 condition to them. Not only does this bear on government funding, but medical priority and insurance coverage. I know that if one walks to an ER saying that they started to get ringing in the ears, they will often be placed low on the waiting treatment list. They will ask you on the sign-in if you have pain.

Forgive me for wording. I'm in serious facial and gum nerve pain tonight, but I need something to focus on. I'm also ringing very loud and some of that may be due to having back to back medical appointments tomorrow for other conditions.

Do you have any thoughts on how the system can be changed?

The only way anything ever gets changed is through lobbying. Get huge numbers of people to sign petitions and/or write to senators/MPs to demand change.

The other factor here is that you're focusing almost entirely on California. Remember that things are done differently in other countries.

Sorry to hear you're in so much pain, Greg. I really wish we could fix this so that nobody would have to suffer again.

 

[Starthrower]

Do you have any thoughts on how the system can be changed?

@Greg Sacramento no. We need to create a new system because this current one is not changing.

 

[Greg Sacramento]

@Starthrower I agree and know that healthcare system values need to changed across the entire USA as I'm been to enough conferences. I spent 10% of my employment time attending certified health classes or healthcare system meetings.

Doctors were required to be certified in advanced CPR. Some doctors couldn't even pass the written multiple choice exam which was not that difficult. Many doctors don't like to accept new treatment procedures. Most doctors only see a 30 minute film on tinnitus while in medical school. They do treat physical symptoms, but some doctors don't have a clue on how physical problems can connect to tinnitus. Within level 1 trauma centers where I worked, 30% of healthcare workers don't know anything about tinnitus. Most never heard of hyperacusis or ASD.

We really need more assistance from healthcare and they need to understand what can made tinnitus worse. Healthcare professionals could do a lot more for tinnitus awareness, but they need to learn more about tinnitus first.

 

[Starthrower]

We really more assistance from healthcare and they need to understand what can made tinnitus worse. Healthcare professionals could do a lot more for tinnitus awareness, but they need to learn what it's about first.

@Greg Sacramento I so agree. I tried to change the tinnitus "system" back in 2004 with the ATA. It worked for a while and gained attention from some congress people and hearing health professionals. I was looking for those "professionals" to work with the program by donating time. But many only wanted the grant money for patients.

I had high hopes of people donating time and devices and testing.

Some people used the grant system by lying about their finances. It was meant for low income people without insurance. But as usual people took advantage for "free" things like hearing aids when they could very well afford them. One person got the grant, bought hearing aids, and then sold them for money.

I don't know how to change this system. But I tried.

 

[Greg Sacramento]

@Starthrower All of us who post here are compassionate, but some would agree that the system isn't easy to change when it comes to anything unless it involves technology advances. Greed, selfish attitudes and not being able to understand what pain is everywhere.

There are many ways to get tinnitus, but yesterday a doctor said that he was most concern with the following:

Lifestyle - improper oral hygiene, dehydration, diet, bad posture, emotional stress, bad environmental factors, letting health concerns continue without treatment such as accumulation of ear wax or infection, over exposure to noise and ear pods. Doctors not explaining to tinnitus patients that long withdrawals from medications are needed. Giving patients medications that can increase tinnitus. Having only highly qualified medical personnel remove ear wax. Dentists not letting patients rest their jaw periodically with dental surgery especially when the front lower jaw is involved.

I'm guilty or a victim to all of the above, except improper oral hygiene.

 

[IvanRus]

So, to the points.

What can or should we do to promote research and development of drugs in the field of tinnitus / hearing damage?

1) This is the simplest: regular personal financial donations in the amount that you can afford. There are many remarkable research teams in this direction who are already working at some advanced stage. For me, the favorites in the first place are:

- Professor Thanos Tzounopoulos

- Hough Ear Institute;

2) Raising awareness in the Internet space with the aim of informing patients that certain studies are being conducted and that some of them need financial support from everyone.

This information needs to be disseminated throughout various tinnitus communities (on Twitter, Facebook, Reddit and so on, there is a lot of communities on tinnitus and hearing).

3) Attempting to raise the attention of a wider public - the media, journalists, politicians, especially the Ministry of Defense.

It is possible to produce a small video on tinnitus and launch it on YouTube and other social networks.

4) The most grandiose plan is to write from the Tinnitus Talk community to various funds of big philanthropists. Kind of like Bill Gates, Mark Zuckerberg and others. With the goal that they donate to a specific institution for a specific study.

They can only donate to legal entities, as far as I understand.