This is the group i was thinking of

http://www.neuropathyaction.org/about_naf/index.htm

Thank you Echoes: I just sent them an email.

I also just found the statement from his HMO from June of 2008 indicating that they did indeed pay for the shoes and inserts.

I wonder if I should bring this to the hearing and say "well, you paid for the shoes and inserts last year, and this year YOU PAID FOR THE SHOES, so why not pay for the inserts?"

Think this might have any affect on what the Judge decides?

Mel

And I'm sorry you didn't have much luck with the Neuropathy Association. (I have criticized them in the past for not being a really strong advocacy organization, and not aggressively pursuing funding, famous people to talk about the condition, and all that, but you'd think they might have been able to refer you to someone.)

I'm not as familiar with the organization echoes mentioned--my sense was that they were more West coast--but I suppose we should check it out.

The TNA doesn't even have a moderator for their BB. It can run wild, and they never even bother to check it out- unless someone calls them and mentions that something's wrong.
I don't bother to pay dues anymore cause I'm not so sure that they
do anything other than look for medical research that is already being done.

They don't seem to initiate anything, or do anything for sufferers.

They also aren't transparent in their use of funds.
They refuse to unveil where the money goes.

Oh, speaking of BB and message boards for The Neuropathy Association, I initially went there to post my question about them helping my husband with an advocate when he goes to his hearing before the ALJ.

I went to the website, and emailed them. I got an auto-responder telling me that they don't answer people back and that I should go to the Bulletin Boards.

So I went to the Bulletin Boards. Lots of messages but no where to register if you want to post a question. You can view messages as a "Guest" but can't post.

THAT'S WHEN I PHONED THEM. I got a very nice man (the one who told me that they don't have the funds to help people), and I told him "I'm at your website and I'm at the Bulletin Boards and I don't know how to register, can you help me'. He said "hold on while I bring it up at my end".

He poked around and said "oh my, you are absolutely correct, there's no place for you to register so you can post" He said he would ask the experts at his end how I could rectify this (the point is moot because he answered my question anyway) but I still wanted to be able to post (for any future occasion). He said he would phone me back when they figured out how to allow people to register to be able to post on their bulletin boards.

I'm not holding my breath. But he was very nice and pleansant anyway.

Mel

What Alan is running into are based on national medicare rules that insurance companies follow, so contacting the advocacy group in California may help if they have had any experience with the problem with shoes and inserts for people who have non diabetic pn. And really who better to call them than Melody, shes not shy.

Just the phrase diabetic neuropathy annoys me. Its peripheral neuropathy with a cause attributed to diabetes and really lack of circulation caused by diabetes. I know diabetics have additional problems with PN because of their lack of circulation and terrible problem with wounds and infections but really there is no such thing as diabetic neuropathy. We all have peripheral neuropathy. You would think that this is something an advocacy group would address.

Echoes:

I just got an email from the Neuropathy Action Org.

Here's what they said:
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"Thanks so much for contacting the Neuropathy Action Foundation (NAF). I am so sorry to learn about your husband’s struggles. It always amazes me how health plans treat folks to save a buck or two off of their bottom lines.

Melody, your husband’s situation is very tricky. Since this will be an ALJ hearing, you want someone who can be present with you at the hearing. I would try contacting the Medicare Rights Center at http://www.medicarerights.org/ since this is a Medicare issue. The Medicare Advantage Plans (HMOs) deny coverage left and right and unfortunately seem to get away with it, however, keep on fighting the good fight until you have no options left. After doing a little research this is the only thing on the Medicare website I can find about custom shoes or orthotics http://www.medicare.gov/Publications/Pubs/pdf/11022.pdf. It pertains only to diabetics though once again.

Melody, I am so sorry I do not have stronger suggestions but definitely look into the Medicare Rights Center. Best of luck to both you and your husband."

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so at least they were kind enough to respond. I'm going to look into those links, but I'm not holding my breath. I guess I'm looking for an ALJ who will consider a COMPASSIONATE EXCEPTION.

I wonder if they ever grant these things???

Melody

If the ALJ is employed by the insurance company i wouldnt get my hopes up, however you should bring all of your proof of receiving shoes, inserts etc. in the recent past.

This is exactly the type of a thing that an advocacy group for a particular disease should be seeking to change. That is the problem with so many things related to medical care such as the new medical insurance bill, electronic records etc....way too much lawyers input, insurance companies, doctors and no patient input or representation on boards.

How do I find out if the ALJ is employed by the insurance company?
thanks, Melody

http://www.nyconsumerhealth.org/rights5.html


at this site is a detailed explanation of the process. it states here that most appeals are over durable medical equipment and orthopedic devices.


http://www.cumc.columbia.edu/dept/al...cal_update.htm