Diaphragm pacing

[Ladyinn]

My caregivers spent the morning talking to the Cleveland doctor's office where the diaphragm pacing procedure is being conducted. We have gathered all the necessary records and test results and are ready to send them to the Cleveland office to be evaluated to see if I qualify.

I have taken myself off of the hospice program as of this Friday. This then means that the procedure and equipment will be paid for by Medicare and my secondary insurance. Or so, we were told in the beginning.

Tim was told that as of today's date there has been no procedure done with Medicare covering the cost. However, Medicare said that once the procedure was FDA approved the procedure would be covered. It is now FDA approved but there have been no procedures done that have been submitted to Medicare to test if they will or will not pay. Therefore a patient must pay in advance for the full amount and when/if Medicare pays the patient will be reimbursed. Front costs are $55,000.

Broke my bubble! Unless the house sells I don't have $55,000 laying around. Just thought I would share for anyone who may be on Medicare and thinking about having this implanted.

 

[rose]

55,000! That is discouraging. I wish they'd give you a better idea of how long reimbursement would prbbably take. Good grief! Thanks for sharing.

 

[notgivnup]

Thanks Diane for sharing this news. I was wondering if it would be covered by medicare. Wow!, $55,000, outragous! Almost as bad as the PWC. How do they come up with these high costs?Why?...I quess because they can....:-(

 

[MuonOne]

I have seen prices from $5,000 to $81,000. The $5,000 was said to be the extra patients in the trials needed to provide because the research funding did not cover all the costs. Some comments seemed to suggest variation in price occurs due to other activities done at the same time or potentially complications (length of time in hospital), I don't know.

I can find no reports on new person(s) who had the procedure after the fda announced it's OK with the safety issues.

What does PWC mean?

 

[joni51]

PWC= Power wheel chair. Diane where can I look at this info? not that I have 55,000 either..

 

[notme]

Once it approves moderation, here's a link on it.

NeuRx Diaphragm Pacing System Approved for ALS | MDA/ALS Newsmagazine

 

[notme]

I put up a link to it--just waiting for mod approval.

This sounds like it will be of great benefit to PALS! Why in the world wouldn't Medicare pay for it?

One of the people that helped create it lost his sister to ALS. I guess it will just take a while for the insurance companies and Medicare to get into the game.

Anyone know if a petition would help? People shouldn't have to sell their HOME in order to prolong their life! I don't know anyone that could come up with that kind of money.

It sounds like a relatively simple procedure to perform. I hope you are able to use it!

 

[LizT]

Though $55,000 may seem extreme, when you compare it to the cost of someone living on a vent, its pocket change. It costs about $250,000-$300,000 for someone to live on a vent for one year. This of course is not all out of pocket cost, but still, big difference.
I know this post doesnt help those who need to come up with the $55,000- just wanted to put that info out there.

 

[Al]

Hey Liz, what's all that money for? Seems a bit much to me.

AL.

 

[LizT]

Al- to be honest, im not sure. But i have heard this figure given multiple times. It was even in one of the articles about the diaphram pacer. It is a very high price, but its accurate from my understanding. Of course most of this is paid by insurance, whether that be Medicaid, Medicare, or Private insurance.

 

[susanf]

There was an article in the paper of a PALS on a vent and it cost $250,000 a year for his care. Probably including what medicare pays