i can see a neuropathy organization not wanting to come to a specific hearing because of lack of time or manpower but you would think that they could write up a standard brief that a person could submit as to why some non diabetic PNers have the medical necessity of orthotics and shoes. That California organization talks a good ball game but that appears to be all they do. Both organizations are absolutely useless. They should be working on getting the medicare rules changed at the federal level. What is it exactly that they do?

I agree, so it has to be UP TO US to do DO THE WRITING AND EMAILING.

Anyone know who writes the medicare guidelines and who I can write to?

Thanks much

Melody

Found these two sites from Medicare concerning shoes, etc. Interesting.

http://www.medicare.com/equipment-an...-footwear.html

http://www.medicare.com/equipment-an...tic-shoes.html

Government writes the rules???

HI.

Yes, I'm aware of the information that was stated in these two links. As a matter of fact, I'm going through it myself because I'm a diabetic and I also have neuropathy (although I was extremely lucky and got a handle on it because I take Methylcobalimin every single morning.

In MY case, I am entitled to orthopedic shoes,(I'm not in Alan's category, so I don't need custom molded anything), but diabetic shoes (let's just call them fancy sneakers with big toe boxes), well they are costly. But the HMO will only contribute $88 towards my shoes and my shoes cost much more than $88.00. Other HMO's pay as little as $40 towards the cost of the shoes.

That's why many shoe companies refuse to take the $88.00 and the $40.00 (unless the patient provides the rest of the money).

I'm on Social Security Disability and I grow my own food in my kitchen. If they think I can come up with a co-pay of $100 or more, they are kidding themselves. I mean, what's the use of having insurance if they don't cover SHOES for goodness sake.

Thank god, I don't need custom orthotics like Alan does. I DID need them over 5 years ago because I had a double heel spur (but surprisingly, I have had no problem with this condition for YEARS)

Okay, I just found out who takes care of all these things.

THE CMS
Centers for Medicare Services.

Here's the website

http://www.cms.hhs.gov/

Now THERE'S A LOT OF INFO AND LINKS AND THINGS TO CLICK ON, and there is even a contact link, but after doing that, I have no idea what to do next. I want to contact the people who make the policy, who make the guidelines, and request that they CHANGE the status on not allowing non-diabetics to get shoes and orthotics.

So any of you creative people out there, click on this website, scroll around and if you find a place that I send an email or call (about changing policy), kindly let me know.

I couldn't find it.

Thanks, Melody

Hi Melody,

I am very aware of the situation you and your husband are going thru as I have been following the posts. I should have realized that you more than likely have seen every site there is to see and then some. I should not have included those sites. I am sorry that I did.

I, myself, need custom orthotics, at least to start with, BUT they will not be paid for. I will have to pay out of pocket when I do get them. And they are expensive as we know. I have had to pay out of pocket for needed medical equipment for quite some time.

If I had diabetes, orthotics would be paid for. But I do not have diabetes. I have peripheral neuropathy due to CMT. My feet are VERY sensitive and with the way I walk I could use orthotics but yet orthotics are not paid for. Any kind of shoe is not paid for either.

When the time may come for AFO's for me, and it probably will happen, I believe they do pay something for them. I certainly hope that there is some help for them.

So with all due respect Melody, I do realize that you have been going thru a lot of stressful stuff. I hope you do get a favorable answer soon.

Wow, with all the stuff you are dealing with, and because you are NOT diabetic, they won't cover your orthotics. Stinks, doesn't it? How they rationalize what they rationalize, well, I don't see it getting any better any time soon. I guess we all have to suck it in and do whatever we can, HOWEVER we can.

I handle stress by sprouting my own food in my kitchen. You have no idea how soothing it is, how comforting and how calming, when you go into the kitchen and you see your little garden all abloom with sprouting sprouts.

They just SPROUT all the time, even when I put them in the fridge, they STILL SPROUT. They make me smile, so my body feels better.

I learned a cool hobby. A great de-stressor.

I hope I can find an organization, or someone who can change those medicare guidelines.

I'm going to give it my best shot. I can deal with regular shoes, but people like you and Alan, well, it's just not fair. You guys should get all the foot gear you need and you should have it paid by insurance.

So keeping fingers crossed.

You take care,

Melody

Melody,

Have you looked into this medicare advocacy org?
http://www.medicarerights.org/

May be worth a shot.

Antonina:

WHAT AN EXCELLENT WEBSITE. I just clicked on the "contact us" link and I wrote them the whole story.

Here's hoping someone reads it and gets back to me.

I'll update.

You guys are the greatest.

Melody