The comment period at CMS for the coverage analysis and reconsideration of home oxygen therapy for Medicare beneficiaries with cluster headache closed out last night at midnight with 61 favorable public comments... 

Good on all of you who posted public comments and tried to get your PCP or neurologist to comment.  Thanks also to the folks at OUCH for beating the drums with all the emails and for sending comments of your own.

I spoke with Dr. Sheftell today. He is pleased with the response and looking forward to the next phase of this coverage analysis.

The fat lady ain't sung yet as we're only a third of the way through this goat rope so hang on and keep the good thoughts coming.

Thanks again and take care,

V/R, Batch

Done....

Lady Luv

All done!

Thanks so much for this post Batch!!  Finally got print offs of your initial thread on this subject to my Doc yesterday but certainly didn't realize that I could make a comment as well!!

I fit in both categories, about to turn 63 and my BC/BS Insurance thru my wifes employer follows CMS guidelines and will not cover my O2 scripts....my CRS disease prevents me from being able to say exactly how much I spent out of pocket but I know it was WAYYY over $500 and I'm pretty sure it got almost all of my first SS check last August in the amount of $833 during my latest cycle so this is a VERY important issue for me!!

Thanks again!!

DD

The link and info are also on the OUCH website for all to see:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

For some odd reason, I cannot enter any information into their online form.  I can type anywhere on the net besides that page. (Yes I've tested it on many sites I visit)

I just don't get it....

Redd wrote on May 4^th, 2010 at 7:58pm:

For some odd reason, I cannot enter any information into their online form.  I can type anywhere on the net besides that page. (Yes I've tested it on many sites I visit) I just don't get it....

You need to click on the posting rules first, which opens a small pop-up, and then you'll be able to check it off and put your info.

I did that Mel...and still nothing.  I didn't even get the pop up. 

Between wiping my very very raw nose, I'm trying to figure out how to place my comment.  I'm determined to figure this out.

Redd wrote on May 4^th, 2010 at 8:49pm:

I did that Mel...and still nothing.  I didn't even get the pop up.  Between wiping my very very raw nose, I'm trying to figure out how to place my comment.  I'm determined to figure this out.

Enable pop-ups.

You definately have to enable pop ups for this to work. When you click on the link to view the privacy info that intiates the pop up. There is a 2nd pop up after you click on the box that you have read, blah blah blah.

I have posted...

I added my "2 cents"  :)

Woo hoo - at last count there were 32 comments!!!!!

Keep it up folks!

Good on all of you for responding and on OUCH for sending out the mass email on this topic yesterday. That has made a clear difference in the response rate.

As of this morning there were 21 comments posted with three medical professionals responding. 

We still need more neurologists and PCPs to respond who treat our disorder and routinely prescribe oxygen therapy as an abortive of choice.

I've been working with Jean Stiller and others at CMS for over a year on the topic of oxygen therapy for cluster headache. 

They tell me that results from the recent Goadsby study can be a game changer for the present non-coverage policy for Medicare beneficiaries suffering from CH, but it can't stand alone as the key decision factor. 

They also said the number of substantive favorable comments from neurologists and PCPs with first hand experience prescribing oxygen therapy will be an important part of their coverage analysis.

The private comments are good but limited in substantive information due to the CMS PHI Privacy Rule standards that prevent the use and disclosure of individuals' health information like, "I've used oxygen therapy for my cluster headaches for years and it is very effective."

Take care,

V/R, Batch

Done!

Good People of Clusterville,

Now we're cooking...  51 public comments as of 0800 this morning.  Our goal here is more than just reversing the present non-coverage determination for home oxygen therapy for Medicare beneficiaries with CH.

A new NCD allowing coverage of home oxygen therapy for Medicare beneficiaries with CH will ripple through the entire health care industry calling more attention to our disorder...  That will benefit CH'ers no matter the age.   

Keep up the good work...  We still need comments from more PCPs and Neurologists who have prescribed oxygen therapy to you.

Take care,

V/R, Batch

I'd like to mention a side note to this discussion - while it focuses on Medicare/Medicaid coverage, I would ask that everyone please remember that Tricare, the military health care coverage, is based on Medicare.

If Medicare refuses coverage, so will Tricare, and there are a high number of active duty, retirees and veterans in our midst, as well as their family members.  They would all lose their home oxygen coverage.

Our service men and women and their families deserve better.

Cat

Done...

Don

Cat,

Good point and thanks for voicing the concern.  Tricare is fenced off at the moment and still covering oxygen therapy...  That's how I get mine covered so I watch all the legislation like a hawk...

Unless there is new legislation, Tricare coverage of oxygen therapy shouldn't be affected by a CMS decision to continue the present non-coverage policy for Medicare beneficiaries suffering from CH.

What concerns me most is the $500 Billion the idiots in Congress took out of Medicare to fund state provided medical insurance for the uninsured...  That has a very real potential to impact Tricare, but that's another post along with the disaster preview of what will happen here in the US that we're seeing in Greece and the EU.

61 public comments as of 0800 this morning...  Good on all of you...  Please keep up the good work...  We still need more substantive comments from PCPs and Neurologists who frequently prescribe oxygen therapy to their patients with CH.

Take care,

V/R, Batch