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kemyersvance

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In December, while waiting on my surgery date for yet another orphan disorder (Avascular Necrosis), I contacted Dan with some information regarding publicity for hyperacusis.  The AMA was running an ad on T.V. asking everyone to voice their opinion on the current state of the medical system and what they could do to change for the better.  My state (CA) got a D rating on this subject and, in my opinion, I thought it should of been an F.  Their email address for this is omss@ama-assn.org.  My primary issue with them was establishing a CPT code (Current Procedure Terminology) for hyperacusis.  This is the medical communities bible of diseases and disorders that can happen to a human being.  If they don't have one for your particular situation the doctors, Social Security, and insurance companies say it couldn't possibly exist.

 

Dan posted a message about the ATA getting radio coverage for their cause in the state of Oregon.  My brother listens to talk radio most of the time in Houston.  He told be about a station called Pacifica.  The primary stations are in large city but the also have many affiliates.  I'm sure if someone from our board would contact them about hyperacusis they would put something together for us on a national level. the email address for them is http://www.pacifica.org.

 

I know we have all paid for treatment out of our own pockets and the charges for this, all in all, are not high dollar amounts necessary for the medical community to establish CPT codes for doctors, Social Security, and insurance companies.  What they think is low dollar can put some of us in the poor house and I don't think it's right.  There are so many illnesses and disorders out there that are considered orphan diseases because there aren't enough people that have it.  Personally, my husband and I are living on one income in a very expensive state.  We have had to scrimp and save to continue my treatment, and we have insurance that won't pay for anything related to hyperacusis.

 

I believe that if all of us come together and communicate with our government and the AMA we could change the system.

 

Karen

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LynnMcLaren

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Reply with quote  #2 

Hi Karen, (((( Smiles )))

 

I payed out of my own pocket to help myself as well...

Couldn't get the help I needed any other way.. 


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Reply with quote  #3 

Karen: 

Canada's medical system recognizes health concerns on an equal level, no matter how many people have the trouble, such as Hyperacusis.  I have had all my specialists' exams and endless visits, fully paid for by my Provincial Government - - and many Extended Health packages here can cover extras, such as TRT, personally moulded earplugs, specialists in other countries and travel to access, and etcetera.

 

As Canada is your neighbour and situated on the same landmass as the USA - I think it would be a very rewarding project to search about for the info you need on the net, using Canadian sites ......  amalgamate the info - and package it as your thesis - which in reality, will be your 'ammunition'.

 

I am so sorry - and astounded - to read your post - and I hope for a much better future for you, re medical coverage.  Wishing you the VERY best !!

 

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kemyersvance

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Liam,

 

Thank you so much for your reply.  I wish the USA had socialized medicine, but we don't.  Any business related to the medical industry sees our citizens inability to connect and establish control over this situation.  They are like vultures waiting for us to die.  In my life time several Presidents have wanted to establish socialized medicine as far back as Jimmy Carter in this country.  The money and the power the medical industry has in the USA puts up a wall that none of us seem to be able to break through.  Our senior citizens are buying their medical supplies from Mexico and Canada to save money because Social Security benefits and small pension aren't enough to live on.  Our countries rich are getting richer and the poor are getting poorer and the middle class is disappearing.  Don't even get me started on George W. Bush.....I have a t-shirt that says, "There's a village in Texas missing it idiot!!!" 

 

Karen  

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bobm

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Reply with quote  #5 

i guess it could be a trade off i live in Canada and yes going to the Dr, for a diagnosis etc is paid for .the audiologist is not, most insurance coverages only go to a maximum.that wont cover the amount of trt.,so yes there are some advantages,i waited over 3 months to see a ear specialist,then of coarse did not get any more info than i have gotten from this board probably less and not what i would call helpful,so i have seen 3 more,and yes they have been paid for but have gotten me no further ahead.

 

so you may have to pay for your services,but at least the services are out there to get .

 

stay well


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Reply with quote  #6 

Hi bobm:

 

It is really curious looking at the differences in med coverage between the various Canadian Provinces.  Mind you each province is a separate entity with vastly different monetary situations – but I do find it confusing at times.

 

In B.C, all my specialist fees are paid for.  I blew it a few years ago and fell quite a distance landing on my knee - emergency hospital treatment ensued with cartilage specialist down the road too and all was paid for.  I didn't know that an audiologist was not covered in some provinces - which province are you living in ?

 

But as you - I also had to wait about 4-months for an appointment with the H & T specialist in Vancouver, namely as they were the only ones offering this speciality at the time.  One country, but so different.  But then I am expecting too much saying that, as we are a vast land mass. 

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bobm

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Reply with quote  #7 

Liam, i am in Ontario,its funny as some audiologists were paid and some were not??i guess it has to something  to do about getting a hearing test as they are not covered.when you get a hearing test it isn't covered. but your right other procedures are covered fully.but don't think b/c of that its great.there are huge waiting lines in emergency rooms ,back log for surgery,waiting lists for almost all specialists.on and on.my mom needs back surgery and there is a waiting list of almost 1 year......

 

i would rather pay for it if i had the choice of Dr's ,procedures,time frame.

i waited 6 months for an MRI on my back.crazy.

but we all have to deal with what we have in front of us.

 

stay well


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LynnMcLaren

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Reply with quote  #8 

Hi Bob, (((( Smiles ))))

 

It all depends on how much it cost's..

Surgery is rather expensive...

Lots of medical procedures are very expensive to pay for..

Even insurance bills and co payments and things not covered

can be expensive as well..

 

Thats why in this country..

If they can deny you and fight you on it...

That you really don't need it...

It costs them nothing at all...

 

It's never perfect..

But some trade off's may be better then others..

Depending on who benefits....

 

 

Quote:

i would rather pay for it if i had the choice of Dr's ,procedures,time frame.


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Reply with quote  #9 

My primary issue with them was establishing a CPT code (Current Procedure Terminology) for hyperacusis

 

THE CPT CODE for hyperacusis is:

 

388.42

 

You can be sure this is an appropriate and recognized code.

 

Marsha J

 

At least in the USA

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Reply with quote  #10 

My apologies - this is getting off topic - but I needed to ensure that I advised bobm of my experience - as it may be able to help he and his mother also.

 

Hello bobm:

 

Yikes … a year is a long wait – I am sorry to hear that.  I do hear of complaints but not that much in B.C. nor Alberta - mind you nothing can be perfect.  We have private clinics here – do you not have them approved ?    Here in B.C. we can use the entire offerings of specialists as a pool – for they are paid from the same 'firm'.   But in truth, few know this. 

 

For example, husband was advised by physio about possible knee surgery and therefore had to see a specialist beforehand.   In this he was advised of at least a 6-month wait.  So we asked them to check about the province, and he ended up having his knee attended to by the specialist within the very next week – it was a 5-hour drive into the Kootenays – but so worth it.  Can you possibly do that too ?  I hope so.  Another example is a girlfriend 2-summers ago – having terrible time with her heart and just to see the specialist would be 6 months minimum again.  So we all got together and phoned about – found a doctor in Burnaby that would put her on his emergency list – and on seeing her records (we faxed and couriered down to him) he asked her to come down immediately and to be prepared for a full operation.  Two days later she was in surgery and they found 9 blockages.  We very much doubt she would have made it waiting for just the first visit of 6-months down the road.  

 

So – what I am getting at here – is that hopefully you could do the same thing – ask about bobm.  For they are all paid by the same ‘firm’.    Good luck !

 

Okay - I'm gone - packing my bags for China - I am soooo excited

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janepm

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Reply with quote  #11 
if someone would please write me what you would like to be said, and Marsha, using your codes maybe, I would be more than happy to "pitch" this organization you are speaking with about getting some coverage. No promises but I've been in PR for years and work with the media all the time. So far, and this was years ago that I tried, I was never able to get anyone interested in covering us but things have changed, I hope!
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bobm

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Reply with quote  #12 

Liam,that's good advice i will see if that's possible here.

have fun across the pond

 

stay well


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kemyersvance

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Reply with quote  #13 

I guess I have a little egg on my face.

 

Doctor Olsson had given me all of the codes for hyperacusis diagnosis and treatment before I went to him.  It was in his packet online with the questionnaire to fill out.

 

My HMO and Blue Shield of CA said they didn't exist.  I called both of them after Marsha posted the CPT code.  My HMO had no trouble finding them after I asked her to look it up.  The insurance company said they "MAGICALLY APPEARED" in the 2007 CPT codes.  Since my HMO had agreed to pay for my visits, through their capitated fund, to Dr. Olsson, they are now coughing up the initial money we spent for the intake and the sound sensitivity test.  I have a meeting scheduled with the Director of my HMO to explain the difference between hearing aids and the devices in a couple of weeks in hopes that the will pay for the devices too.

 

This will give the ammunition I need to fight Social Security in court.  I am in the process of contacting Senator Boxer to see if she can persuade the Social Security Administration in San Bernardino the grant me a court date sooner that one year.  I have a copy of the letters sent to them by Dr. Olsson.  When I took them to the attorney he astonished that the turned me down for SSDI.

 

THANK YOU, THANK YOU, THANK YOU, Marsha!!!!!!

 

You really made my day.

 

Karen

     

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LynnMcLaren

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Reply with quote  #14 

Hi Karen, (((( Smiles )))

 

I don't have blue shield.. Though I did at one time..

But thats great ! Maybe if I ever get sick again..

With that code I can bypass the warden at my HMO..

 

When I tried to see if they would pay to let me see Dr Sweetow..

In 04 I think it was...

The head of the audiology dept said no. Not going to reffer..

Even thou I had H...

I was alittle bit to sick then to fight further..

I was still battling H symptoms..

As it meant going to SF for treatment which is pretty loud..

Streetcars and stuff... 

I kind of wavered too but..

As I had a request put in before hand that took me to there..

To request denyed...

 

But next time...

We shall see...

That was so long ago..

Maybe things have changed for the better ???


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kemyersvance

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Reply with quote  #15 

Thanks for your reply.  My husband and I have learned if you don't ask questions and research on hyperacusis you will get trampled on every time.  If you know more that they do, teach them and you will get results.

 

Karen

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Reply with quote  #16 

Hello,

This code is of value. Thank You for providing this.

Best,

Star

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LynnMcLaren

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Reply with quote  #17 

Hi Karen, (((( Smiles ))))

 

Thats why it's so great to have this board..

This network.. So we can learn from others..

What they won't tell us...

Here.... On step up on them...  (((( Smiles ))))


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janepm

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Reply with quote  #18 
AND on that note, don't do what I did: I had a dismal Primary Doctor who while nice, wasn't very aggressive and we all know in an HMO environment, it's the right Doctor pulling for you that is the most important.

So given that, I didn't get a referrall to have TRT done by my Primary, rather, I bypassed him altogether and then of course got turned down, I appealed, turned down, I appealed, turned down...because among other reasons, it wasn't generated from my Doctor.

I don't know why I didn't do this but it probably wouldn't have worked anyway as my provider was out of California and while I could have probably fought that on some extintuating circumstances, availability of providers in my County (which is nil), I ended up paying the entire thing myself.

So a word of caution folks and yes, Lynn is right, this is one of many reasons why this group is so extra special!

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Jane
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LynnMcLaren

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Reply with quote  #19 

Hi Jane, (((( Smiles ))))

 

You must have the same H.M.O as I do..

My main primary provider wrote the request as I asked..

And it was sent to my neuro -otoligist I was seeing..

And the head of the whole audio department..

Would not recommend it..

Would not refer...

 

Turned down the request to see a sub-specialist..

Dr Sweetow.. UCSF...

It probably would have been a big battle that

may have got turned down at the end anyway...

 

If I went futher..

Maybe next time it will be better...

Hopefull there " never " will be..

A next time.... (((( Smiles )))

 

Quote:

So given that, I didn't get a referrall to have TRT done by my Primary, rather, I bypassed him altogether and then of course got turned down, I appealed, turned down, I appealed, turned down...because among other reasons, it wasn't generated from my Doctor.
  


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janepm

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Reply with quote  #20 
well, we must have the same HMO, Lynn, for sure. And the thing about it is our plan has a professional relationship with both Stanford as well as UCF. Go figure!

Well, the priciest financial part if behind me and now, it's maintenance. My east coast TRT person, as you know, is retiring, well, actually she's already gone now and so I've been talking with tons of folks here in California, especially close to me now as I really don't want to travel far again. There are so many folks here now and trained in Jastreboff, it's wonderful, what a difference.

I have been told that my testing will be minimal and not too pricey now. Thank the Lord!

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Jane
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shawns

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Reply with quote  #21 
To Janepm:
I wrote a paper that I am attempting
to get into U.S. middle schools all
about noise related ear disorders.
Some success so far, but tried to get
tv stations interested w/ no reply.
  If you're interested, let me know
where to send you a copy. Thanks,
ShawnS

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janepm

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Reply with quote  #22 
Hey Shawn: thanks for doing that. Tell us what you have done to try and get tv shows interested in it, what has been your "pitch" and what category of shows have you contacted?

And then I can give you a bit of guidance. Generally, I would think tv shows would probably cover this more likely if a couple of schools, even one has used this, then they would have a show.

I would start local and build up from there. If it's a news show, you want to contact that station's Assignment Editor,, if it's a national show, then the producer.

Newspapers and wire services are also a good source and I would think print media could probably be approached now as you have an idea you want to offer the schools and you may get some coverage without having it have it in place.

Just some guesses there.

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Jane
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shawns

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Reply with quote  #23 
Jane:
I just went to the websites of CBS and ABC and sent
them messages from there telling them about the paper
I have written. I addressed it to Attn. Medical Correspondant.
With no reply. I should probably snail mail them
my proposal. I like your idea of contacting them
after I have gotten some school principals involved.
So far one local middle school principal said they
would introduce it in health classes. Through the
internet I have made a random list of 10 schools
to snail mail next and will do so shortly. Thanks for
your interest and suggestions. Shawn

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janepm

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Reply with quote  #24 
Shawn: I am PROUD of you, way to go!

And sometimes just cold-calling people and telling them the basic who, what, when, where and why and how works and bypassing any paperwork. They will then usually ask for a press packet or a backgrounder for you to send. At that point, ask which way they like to receive information, some like fax, some like email and others still snail-mail. Thanks, again!

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kemyersvance

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Reply with quote  #25 

Jane,

 

You asked for information a while back about what information we would use for the press to know about our hearing disorders.

 

The first thing I would talk about is the four types of hearing disorders addressed on our network and the percentage of people having them.  They are all called orphan disorders.  I know some people that have had this for years and not known what it was.  Definitely addressing them as "hearing gone ballistic".

 

The next step would be about these disorders not being recognized by most medical doctors and facilities, insurance companies, State Managed Health Care departments, and Social Security. And adding all the CPT codes that have been in place for years.  Be sure to state that for hyperacusis and tinnitus ENTs do not offer treatment, they cut for a living, only audiologists do.

 

Next I would pitch the difference between hearing aids and the medical prosthesis that those of us in therapy wear. This is the biggest issue with insurance companies and HMOs.  They don't want to pay for them because they don't understand the difference.

 

If you need more information about this please contact me.  I am currently preparing a case for Social Security on my own because attorneys in my area don't understand hyperacusis.  Go figure!!!

 

Karen 

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janepm

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Reply with quote  #26 
Hi Karen; These are great points for sure and I think you have listed them beautifully. I know that I don't plan on pitching to the media due to time, we will be moving soon so will be tied up for awhile but IF anyone else does, these are great points. Kudos!

And hang in there on the social security, if anyone can do it, you can and not surprised they don't know about Hyperacusis, we have come a long way but have a ways to go, alas and yes, go figure.

Keep in keeping Karen...

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