Re: Let Them Hear and Cochlear

[Guest guest]

Pure conjecture Ms. Jansen.

LTHF was clear that they regretted the decision, and attempted to

fund their heavy workload with donations from all the brands, but had

to make a difficult choice.

Whether you like what they felt necessary to do or not, they have

helped a great many patients from each of our favorite brands.

They not only do charity for the underpriveleged, they also provided

independent legal representation for folks who are rejected by the

insurances they pay/work for.

All 3 mfgs provide insurance claim advocacy, and in various ways

charity, but not actual representation like LTHF. They cannot,

because it is a conflict of interest.

LTHF is an independent 3rd party which works for free to help deaf

people. It doesn't deserve to have impropriety etc. conjured

publicly about it's work.

If someone did that about a manufacturer here, there'd be a huge

brand war, and rightfully so.

I know you've agreed with the rest of us before such wars are not

good for anyone.

Might we apply the same principle to organizations who are trying to

help our community?

They aren't selling anything, or competing with others to be the only

charity. They are just trying to fund a heavy workload.

Sincerely,

Steve

>

> HI Connie,

> That's fantastic news. I was wondering if Cochlear decided to

not give monetary support to Let Them Hear because maybe a lot of the

money was being eaten up in administrative costs rather than going to

those it was intended for.

....

> I'll give money to buy things for the Marine. Donate money to the

nuns in the area who pray - night and day.

That's what they do. Their job.

> I think Let Them Hear denying people a Nucleus or Med-el device

is kind of discriminatory. Sounds like AB is donating devices rather

than cash.

>

>

[Guest guest]

!

Shame on you! Let Them Hear has done phenomenal work and has helped a

huge number of people. They have influenced major insurance companies

to revise their policies to now consider bilateral implants as

medically necessary. They are NOT a scam! And it is not a " major "

charity but a small one founded by a dedicated implant surgeon. They

are an incredible bunch of individuals, and their work is far

reaching. Check out this map of their victories:

http://advocacy.letthemhear.org/map.php

And here, check out the list of landmark rulings:

http://advocacy.letthemhear.org/news.php

We in the implant community are ever so lucky that LTHF even exists.

It's a revolutionary idea to start a foundation to really help people

with hearing-related insurance battles. It is a WISE use of funds,

because a small amount of money can help a whole lot of people if a

policy gets changed in favor of implant candidates. It is like

teaching a man to fish instead of just giving him a fish. Think about

it. Cost of one implant surgery: $40,000. Now think how far that

same amount of money could go towards filing appeals on behalf of

patients seeking cochlear implants, Baha implants or other ear

surgeries. Now think of the precedent that the successful appeals

will set for future patients (and LTHF's record of success is 100%).

I refuse to pass judgement on this matter until I hear all sides of

the story. There may be several " bad guys " here or there may be none.

And the story is not over.

Lydia

Mom of 9-year-old bilateral Cochlear brand user,

[Guest guest]

Lydia,

I don't mean to speak for but I think her point

was more of a generalization that it does sometimes

happen in these types of organizations.

I don't think anyone is denying that LTHF has done

wonderful work for all of us, however, I think

everyone should understand that the work they are

doing was in part (perhaps a large part) funded by the

implant companies. We don't really know how much

Cochlear, Advanced Bionics, MedEl and perhaps other

companies have given to this orgniazation. I have

been told that LTHF asked Cochlear to more than

quadurple their contribution to the foundation (a

donation that last year was over several hundred

thousand dollars). I realize inflation is very high

but in my book that is a pretty steep increase.

Please lets not argue over whether LTHF has done a

good job in the past. The job they have done in the

past is not the issue but rather their request for

excessive additional funding appears to be the issue.

Yes I too would like to hear form LTHF to see why they

did this.

Connie

--- Lydia Gregoret <lydia.gregoret@...> wrote:

> !

> Shame on you! Let Them Hear has done phenomenal

> work and has helped a

> huge number of people. They have influenced major

> insurance companies

> to revise their policies to now consider bilateral

> implants as

> medically necessary. They are NOT a scam! And it

> is not a " major "

> charity but a small one founded by a dedicated

> implant surgeon. They

> are an incredible bunch of individuals, and their

> work is far

> reaching. Check out this map of their victories:

> http://advocacy.letthemhear.org/map.php

>

> And here, check out the list of landmark rulings:

> http://advocacy.letthemhear.org/news.php

>

> We in the implant community are ever so lucky that

> LTHF even exists.

> It's a revolutionary idea to start a foundation to

> really help people

> with hearing-related insurance battles. It is a

> WISE use of funds,

> because a small amount of money can help a whole lot

> of people if a

> policy gets changed in favor of implant candidates.

> It is like

> teaching a man to fish instead of just giving him a

> fish. Think about

> it. Cost of one implant surgery: $40,000. Now

> think how far that

> same amount of money could go towards filing appeals

> on behalf of

> patients seeking cochlear implants, Baha implants or

> other ear

> surgeries. Now think of the precedent that the

> successful appeals

> will set for future patients (and LTHF's record of

> success is 100%).

>

> I refuse to pass judgement on this matter until I

> hear all sides of

> the story. There may be several " bad guys " here or

> there may be none.

> And the story is not over.

>

> Lydia

> Mom of 9-year-old bilateral Cochlear brand user,

>

>

>

>

>

>

" The Miracle at Ohio State "

aka Nucleus Freedom

Implanted 10/04/2005

Activated 11/1/2005

Surgery: Ohio State University

Surgeon: Dr. Bradley Welling

http://internalmedicine.osu.edu/article.cfm?ID=2021

[Guest guest]

And before anyone else decides to bash LTHF, please note that the lead

attorney (director of advocacy) there is the mom of deaf child. She

has a personal desire to see that people get the help they deserve.

If you have ever talked with her, you would know that she is

absolutely passionate about each and every single case, and would like

to help everyone.

Lydia

[Guest guest]

We also have to remember that Cochlear is a public company and therefore must

answer to its stockholders.

Although LTHF has done a lot of good work and helped many people, perhaps it has

just gotten too expensive to fund them in addition to funding Cochlear's own

department which is responsible for helping people to obtain insurance approval.

Obviously we don't know the whole story and we shouldn't be bashing anyone or

even second guessing. They both do good work and we should be grateful that

there is more than one source to go to.

Happy Hearing!

Carol

Boca Raton, FL

N24C 3G left ear -12/11/01

N Freedom- right ear- implanted 3/01/06 activated 4/6/06

Re: Re: Let Them Hear and Cochlear

Lydia,

I don't mean to speak for but I think her point

was more of a generalization that it does sometimes

happen in these types of organizations.

I don't think anyone is denying that LTHF has done

wonderful work for all of us, however, I think

everyone should understand that the work they are

doing was in part (perhaps a large part) funded by the

implant companies. We don't really know how much

Cochlear, Advanced Bionics, MedEl and perhaps other

companies have given to this orgniazation. I have

been told that LTHF asked Cochlear to more than

quadurple their contribution to the foundation (a

donation that last year was over several hundred

thousand dollars). I realize inflation is very high

but in my book that is a pretty steep increase.

Please lets not argue over whether LTHF has done a

good job in the past. The job they have done in the

past is not the issue but rather their request for

excessive additional funding appears to be the issue.

Yes I too would like to hear form LTHF to see why they

did this.

Connie

--- Lydia Gregoret <lydia.gregoret@...> wrote:

> !

> Shame on you! Let Them Hear has done phenomenal

> work and has helped a

> huge number of people. They have influenced major

> insurance companies

> to revise their policies to now consider bilateral

> implants as

> medically necessary. They are NOT a scam! And it

> is not a " major "

> charity but a small one founded by a dedicated

> implant surgeon. They

> are an incredible bunch of individuals, and their

> work is far

> reaching. Check out this map of their victories:

> http://advocacy.letthemhear.org/map.php

>

> And here, check out the list of landmark rulings:

> http://advocacy.letthemhear.org/news.php

>

> We in the implant community are ever so lucky that

> LTHF even exists.

> It's a revolutionary idea to start a foundation to

> really help people

> with hearing-related insurance battles. It is a

> WISE use of funds,

> because a small amount of money can help a whole lot

> of people if a

> policy gets changed in favor of implant candidates.

> It is like

> teaching a man to fish instead of just giving him a

> fish. Think about

> it. Cost of one implant surgery: $40,000. Now

> think how far that

> same amount of money could go towards filing appeals

> on behalf of

> patients seeking cochlear implants, Baha implants or

> other ear

> surgeries. Now think of the precedent that the

> successful appeals

> will set for future patients (and LTHF's record of

> success is 100%).

>

> I refuse to pass judgement on this matter until I

> hear all sides of

> the story. There may be several " bad guys " here or

> there may be none.

> And the story is not over.

>

> Lydia

> Mom of 9-year-old bilateral Cochlear brand user,

>

>

>

>

>

>

" The Miracle at Ohio State "

aka Nucleus Freedom

Implanted 10/04/2005

Activated 11/1/2005

Surgery: Ohio State University

Surgeon: Dr. Bradley Welling

http://internalmedicine.osu.edu/article.cfm?ID=2021

[Guest guest]

Of course. And some cochlear implant users (or their parents) are

criminals. Does that implicate all of us criminals? What I objected

to was the seed of a rumor that LTHF is somehow a scam, and that this

rumor was based only on the idea that some other organizations waste

donor dollars. There could be dozens of legitimate reasons Cochlear

hasn't contributed more money, and unless people really have

first-hand insider information that they are willing to post, I don't

see how we can possibly know why the negotiations broke down. We can

only speculatate, but often things aren't always what they seem, and I

certainly don't pretend to know anything more about this. I DO know

that LTHF has helped a lot of people. I have 3 friends whose children

now have bilateral implants thanks to Let Them Hear, and know

countless others through listserves.

Lydia

>

> Lydia,

>

> I don't mean to speak for but I think her point

> was more of a generalization that it does sometimes

> happen in these types of organizations.

[Guest guest]

Lydia and others,

There are many angles to everything and its normal for some of us if not

many, to question things. Yes Alice is right, we dont have the right to

second guess the decisions that are made. But, we do have the right to

share our opinions (off the wall even) and listen to what others say. That

is how we learn, as I pointed out to Steve. If we did not have the s

to speak up, albeit sometimes with a bit too much energy, how will we learn?

You, and others have shared much that otherwise would not have been posted

in the last couple days. So, no, not Shame on . But, yes, thank you

for provoking the thinking process.

And dont forget, its ok to attack those opinions and rebut them. Just

dont attack the opinionated person, no matter how far off the mark you may

think they are.

*---* *---* *---* *---* *---*

You are depriving some village of an idiot.

& Dreamer Doll (Guide Dawggie)

Newport, Oregon

N24C 3G 8/2000 Hookup

rclark0276@...

http://webpages.charter.net/dog_guide/

[Guest guest]

You seemed to pass judgement on quickly enough, Lydia.

So much for an open mind.

Ted F.

>

> !

> Shame on you! Let Them Hear has done phenomenal work and has helped

> a huge number of people.

> I refuse to pass judgement on this matter until I hear all sides of

> the story. There may be several " bad guys " here or there may be none.

> And the story is not over.

>

> Lydia

> Mom of 9-year-old bilateral Cochlear brand user,

>

[Guest guest]

Ok, no more personal attacks. Feel free to dissect opinions but dont

move on to dissecting the opiniated. Thanks.

CI Hear List Moderator

[Guest guest]

Dear ,

is right. You made a discussion-advancing comment and I should

not have ever said " shame on you " -- that was inappropriate in any

case, and especially so considering that I am really more of a lurker

on this list and not a frequent poster. You all don't know me and I

don't know you, and I shouldn't have lost my temper. , I hope

you will accept my apology.

-- I am curious if you have ever contacted Let Them Hear

yourself regarding Medicare coverage of bilaterals. I would think

yours might be a precedent-setting case that they would want to take

on. I know you have Cochlear, but my reading of LTHF's letter seems

to suggest that they will work with Cochlear and MedEl patients still,

but perhaps for a fee. I also wonder if there are instances where

they will still take on a non-AB client because of the importance of

the case.

Lydia

Mom of , 9-year-old bilateral user

[Guest guest]

Lydia just to let you know that I have been in touch

with Cochlear and that is where I got the info that I

posted.

Have a good day.

Connie

--- Lydia Gregoret <lydia.gregoret@...> wrote:

> Of course. And some cochlear implant users (or

> their parents) are

> criminals. Does that implicate all of us criminals?

> What I objected

> to was the seed of a rumor that LTHF is somehow a

> scam, and that this

> rumor was based only on the idea that some other

> organizations waste

> donor dollars. There could be dozens of legitimate

> reasons Cochlear

> hasn't contributed more money, and unless people

> really have

> first-hand insider information that they are willing

> to post, I don't

> see how we can possibly know why the negotiations

> broke down. We can

> only speculatate, but often things aren't always

> what they seem, and I

> certainly don't pretend to know anything more about

> this. I DO know

> that LTHF has helped a lot of people. I have 3

> friends whose children

> now have bilateral implants thanks to Let Them Hear,

> and know

> countless others through listserves.

>

> Lydia

>

>

>

> >

> > Lydia,

> >

> > I don't mean to speak for but I think her

> point

> > was more of a generalization that it does

> sometimes

> > happen in these types of organizations.

>

>

>

>

" The Miracle at Ohio State "

aka Nucleus Freedom

Implanted 10/04/2005

Activated 11/1/2005

Surgery: Ohio State University

Surgeon: Dr. Bradley Welling

http://internalmedicine.osu.edu/article.cfm?ID=2021

[Guest guest]

Hi Connie,

I believe that the additional funds requsted of Cochlear by LTHF are

probably an important part of the story, and I also believe that the

information you got from Cochlear was reliable. I am not questioning

that. I still think, that unless we were actually there sitting in

the conference rooms at LTHF and at Cochlear, MedEl, Advanced Bionics,

and let's not forget the Mann Foundation, listening to the

conversations, we will never really know all that transpired.

The money part: here is why I think there must be more to the story.

And I will preface this by saying it is TOTAL SPECULATION. But let's

say LTHF asked for $500,000 more from Cochlear. That translates to

about 20 devices at $25,000 each. If LTHF was successful in

convincing just one major US insurance company to reverse their policy

of excluding bilaterals, Cochlear would probably end up breaking even

in a year, because I would think at least 20 people insured by a large

company would get bilaterals. (I am sure it costs something to make

an individual device, but much of the $25,000 goes to pay for the

research, development, clinical trials, etc. that went into creating

it, not the manufacturing.)

If other insurance companies followed by reversing their policies, and

health plans of entire countries followed, the return would be even

bigger. LTHF's track record so far, in the very short time their

advocacy program has been in existence (I think only about 18 months

or so), is excellent, and there is no reason for me to believe they

will not score additional major victories as they have already. Also,

wouldn't it still cost quite a bit to get a program up and running at

Cochlear? What's the typical salary plus benefits for even just two

laywers? So, again, this is TOTAL SPECULATION, but I think it is

reasonable to think that the issue could well be more complex than

just about the money alone.

Lydia

Mom of , 9 years old, bilateral Nucleus user 1/01 R and 3/05 L

>

> Lydia just to let you know that I have been in touch

> with Cochlear and that is where I got the info that I

> posted.

>

> Have a good day.

>

> Connie

>

[Guest guest]

Lydia,

You can get off your knees now. LOL Yes I did contact LTHF earlier

this year. Unfortunately, and contrary to what one list member says,

Medicare does *not* have a process where one can appeal decisions before the

fact as do the private insurance companies. The process comes after the

fact. In other words, you go ahead with the procedure then appeal Medicare

if/when they deny payment. Medicare has criteria for everything. If that

criteria is met, there is no worry, and preauthorization is not needed.

Bilateral CIs do not meet the criteria. If the first CI fails, or does not

perform according to the criteria, that is a different story. My CI does

not meet that.

For LTHF to get invcolved in Medicare cases, the patient has to have

the 2nd implant done first, and that requires he sign an ABN (Advanced

Beneficiary Notice) which then makes the patient responsible for the bill if

the claim is denied.

To date, there is not a single case where Medicare approved and paid a

claim for bilateral CIs. If I found one, it would be the precedent I need.

And, I have been searching for this precedent-setting case for at least 2

years, and am certian if there was one, I would have it wrapped up.

*---* *---* *---* *---* *---*

The careful application of terror is also a form of communication.

& Dreamer Doll (Guide Dawggie)

Newport, Oregon

N24C 3G 8/2000 Hookup

rclark0276@...

http://webpages.charter.net/dog_guide/

[Guest guest]

Lydia

In the end - regardless to the source of money - we as CI users and

families that have hearing loss in our genes will be the great

reaper of this. As in the end LTHF will win the battle allowing

more people to get this awesome technology!! That alone is what is

important.

I have not seen one email where people have been thankful that

someone stepped up to the plate and helped out. LTHF has the

ability - they have proven their success. If LTHF folded people

would truly struggle in getting approvals. Let's face all three

companies have insurance groups and their success rates but LTHF

took it to another level in my opinion! The turn around time some

people got in winning some of these battles the success for the

industry as a whole has been awesome.

When private businesses fight for the coverage of their own product

it just doesn't do what a private sector does.

Let's face it even HLAA - a non-proft - needs money from somewhere.

They get lots of donnations from the companies all the time. Just

last year at the Orlando convention companies were asked to give

money to help the convention take place. The companies help with

the local chapters and they help in the national level too.

I applaid LTHF for all they have done. With that I also applaud the

companies for providing fundings through the years. I applaud Al

Mann and AB/Boston Scientific for their continue support. In the

end as the insurance companies change their policies more people

will be able to get any device and in other words it's more than

jsut getting an AB device - which is a very good device by the way

Kim B

Advanced Bionics CI

> >

> > Lydia just to let you know that I have been in touch

> > with Cochlear and that is where I got the info that I

> > posted.

> >

> > Have a good day.

> >

> > Connie

> >

>

[Guest guest]

Hi Kim,

Oh-oh, I am afraid I have been misunderstood, because I thought I

pretty clearly expressed my gratitude. Did I somehow come across as

something other than grateful? I think I mentioned that I have a

number of friends helped by LTHF. I have also defended LTHF against

speculation that they are somehow not using money ethically, etc. to

the point of getting in trouble here! I agree with you totally 100%!

Can I say that again: I agree with you!! What I tried to say in my

most recent post is that negotiating with several parties (companies,

foundations) and coming to a fair agreement can't be easy, so we

should not be blaming anyone at this point for what has happened,

especially if we don't know for sure what actually happened and have

not heard every side of the story. I am sorry if this somehow came

across as being ungrateful.

I should also probably tell you all that while I am not affiliated

with LTHF in any way, I have had the pleasure of co-authoring an

article with Sheri Byrne-Haber, the director of advocacy at LTHF, for

AG Bell's upcoming Volta Voices magazine issue on the topic of

bilateral insurance coverage (watch your mailboxes!) I am also so

very grateful to Dr. ph Roberson, who founded LTHF. He is the

surgeon who gave my son his first gift of hearing. I think the

concept of LTHF is revolutionary.

Even though my son has Cochlear devices, I too applaud LTHF and the

companies and foundations that have supported it in the past and

continue to do so. Long Live LTHF! :-) I'm all for giving them a

standing ovation, for goodness sake!

Lydia

Mom of , Nucleus bilateral, 1/01 R and 3/05 L

[Guest guest]

Kim,

You said " I have not seen one email where people have been thankful that

someone stepped up to the plate and helped out. "

Now now. Unless one is directly affected by LTHF's work, or understands

their mission, they are not going to realize the impact that LTH has. Yes,

there has been quite a bit of talk about LTH. There is quite a bit of talk

about a lot of things. So perhaps you can excuse most of us for not being

grateful. I dont think you want to be viewed as judgemental, do you? That

is not a position any of us want.

*---* *---* *---* *---* *---*

If the entire population of earth was reduced to exactly 100 people, 51%

would be female, 49% male; 50% of the world's currency would be held by 6

people, one person would be nearly dead, one nearly born.

& Dreamer Doll (Guide Dawggie)

Newport, Oregon

N24C 3G 8/2000 Hookup

rclark0276@...

http://webpages.charter.net/dog_guide/