Status
Not open for further replies.

laurenac81

Member
Joined
Nov 8, 2010
Messages
24
Reason
Friend was DX
Country
US
State
OK
City
Oklahoma City
The last time I posted here was in February. I am the one whose boyfriend's (John) mother (Janet) was diagnosed with ALS in August last year and moved in with us in October. Unfortunately things aren't going well for Janet. She still doesn't have Medicare coverage. Everytime would John call the social security office and they kept telling him that they show she has coverage, but they will have to wait for her Medicare card. John would call Medicare and would be given a claim# to give to those who are billing to Medicare. This number never worked.

After Janet's appointment in February she was brought a breathing machine to use when sleeping, however a few weeks ago John was told that they were still unable to bill Medicare for the machine and they may have to come take it back. John kicked it into high gear and called Social Security and was told that his mother basically doesn't have Medicare coverage and never has due to an error with some code and that she "fell through the cracks" and they would submit an urgent request to get this taken care of.

This past Thursday John went into the Social Security office and spoke with the Manager and was told that there was "Manager to Manager correspondence" going on and it could take another 30 days to resolve the issue. The same day Janet had another appointment with the ALS specialist and she has lost 25lbs since her last appointment, she is now 100lbs, and she needs a feeding tube as soon as possible as she could starve to death. I should also mention that Janet cannot eat soup anymore; so she is only eatingdrinking jello, applesauce, and ensure. Janet also had a respiratory test and John said that her FVC was -31. I don't know if this is possible. Perhaps those who are more familiar with this can shed some light on this for me. John said it was the same test she had back in October, which was exhaling into a machine for as long as she could, and the results then were an FVC of 25. I will never forget that at that time she wasn't even able to blow out birthday candles and to think that she is down to -31 is scary!

I just can't believe this is happening to her and I am disgusted by the system that allows her to "fall through the cracks." If she doesn't get coverage soon I am concerned that her breathing equipment will be taken from her and with no feeding tube she will pass too soon. This is not neccessary and I blame the Social Security/Medicare system.

I am sorry this is so long, but I have gotten a lot of good feedback from the people on this forum in the past and I am really interested in what you have to say about this situation.

Thank you,

Laurena
 
OMG! You need to contact your state rep ASAP! 30 days? All of what you have said is unacceptable!

Have you contacted the ALS clinic's social worker to try to enlist their help in resolving this?

Also, the company providing the breathing machine - ask them for a financially needy form to fill out. If she can't pay for the machine, they should provide it for free and be understanding that Medicare deems ALS as TERI and they will eventually get their money.

Contact your local media! That might light some fire under some bureaucrat's butt and the DME company will certainly provide that machine for free, as they don't want bad publicity!

I'm sure others will have some more ideas on this! I would not let this go without some kind of fight!

Also, since there are no ALSA offices in your area, you should contact the ALSA National people to get their advice and help! I'm sure this has happened to someone before, unfortunately.
 
Last edited:
Like CJ said, absolutely unacceptable. Get her to a better pulmonologist. There is no -31. It is possible to have a higher FVC on subsequent visits. You need a real reading. It is very important that her FVC be up for the placement of the PEG (feeding tube).
 
Thank you so much for the response. Myself and a friend are actually in the process of writing letters to our state government as well as the President. I am so disgusted by this situation and I have thought about contacting the media as well.

Thank you for the number and email to the ALSA and I will give them to John and provide him the information about the paperwork for the needy. This information is very much appreciated!

I will also mention that he should find her another Pulminologist.

Thank you so much!
 
ALS falls under MDA, too

Here is their info in Oklahoma City

OKLAHOMA

MDA/ALS CENTER AT INTEGRIS SOUTHWEST MEDICAL CENTER
(405) 644-5170
(405) 644-6112 FAX
E-mail: [email protected]
Brent Beson, M.D., Director
4221 S. Western, Suite 5010
Oklahoma City, OK 73109

I would call the media first thing in the morning! It's absurd that they would even consider taking her bipap due to a mixup with medicare. That's just...criminal. Tell your friend if the try to come for it while it's sorted out to just REFUSE to give it up.

Medicare should have come into play at 5 months after the initial waiting period. Supervisors emailing? Contact social services in Oklahoma city, too. Go in person. DEMAND they do their job.

While writing letters is a good thing--it takes too long--follow up those letters with phone calls to state reps in the area she lives.

What a horrid thing you all are experiencing!
 
grr. it moderated me. Look at the MDA website. ALS falls under MDA and they have a center in Oklahoma city
 
You will have to call people or see them face to face, while taking notes! Then follow up with emails to confirm your conversations, if necessary.

Look, most people don't care. It's just a job to them. You have to make them care! It's sad but true!
 
Call your congressman's office. I remember reading a story about a man whom the SS administration declared dead and he was still alive. They stopped sending him social security checks. It finally got resolved after he went to his congressman. It got fixed in three days.
 
The FVC -31 probably means that it went down 31% after she was given a bronchodilator. There are two measurements they take, one is pre medication and the other is after. They look at the difference to see if you are reacting to the medication or not. The negative number is usually in the right hand column. For example, if her FVC was 25 pre bronchodilator then it would have been around 17.5 after. Does this make sense?
 
Medication? Have I missed something? Can you explain?
 
Status
Not open for further replies.
Back
Top