Click this link to read a post I like on the clusterheadaches.com message board...

Batch

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61 Comment to CMS on O2 Therapy... Woo Hoo!!!
May 4^th, 2010 at 3:19pm

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

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« Last Edit: May 10^th, 2010 at 8:56pm by Batch »

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LadyLuv CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1495 Champaign, IL Gender:	Re: 5 Days Left To Comment to CMS on O2 Therapy!!! Reply #1 - May 4^th, 2010 at 4:47pm Done.... Lady Luv
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Melissa CH.com Moderator CH.com Alumnus Offline Don't give up! Posts: 7238 Central WI, USA Gender:	Re: 5 Days Left To Comment to CMS on O2 Therapy!!! Reply #2 - May 4^th, 2010 at 4:58pm All done!
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Dallas Denny 62

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Re: 5 Days Left To Comment to CMS on O2 Therapy!!!
Reply #3 - May 4^th, 2010 at 5:37pm

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

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Mosaicwench CH.com Sponsor Offline www.mosaicwench.com Posts: 3507 Near Milwaukee WI, USA Gender:	Re: 5 Days Left To Comment to CMS on O2 Therapy!!! Reply #4 - May 4^th, 2010 at 5:42pm The link and info are also on the OUCH website for all to see: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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Redd CH.com Sponsor Offline Posts: 8457 Stevens Point USA Wisconsin Gender:	Re: 5 Days Left To Comment to CMS on O2 Therapy!!! Reply #5 - 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....
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Melissa

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Re: 5 Days Left To Comment to CMS on O2 Therapy!!!
Reply #6 - May 4^th, 2010 at 8:16pm

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.

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Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way. ~Bernie S. Siegel

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Redd CH.com Sponsor Offline Posts: 8457 Stevens Point USA Wisconsin Gender:	Re: 5 Days Left To Comment to CMS on O2 Therapy!!! Reply #7 - 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.
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Mosaicwench CH.com Sponsor Offline www.mosaicwench.com Posts: 3507 Near Milwaukee WI, USA Gender:	Re: 5 Days Left To Comment to CMS on O2 Therapy!!! Reply #8 - May 4^th, 2010 at 10:00pm 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.
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QnHeartMM CH.com Sponsor Offline I AM a Phoenix! Posts: 1783 San Diego, CA Gender:	Re: 5 Days Left To Comment to CMS on O2 Therapy!!! Reply #9 - May 4^th, 2010 at 10:04pm 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...
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Mosaicwench CH.com Sponsor Offline www.mosaicwench.com Posts: 3507 Near Milwaukee WI, USA Gender:	Re: 5 Days Left To Comment to CMS on O2 Therapy!!! Reply #11 - May 5^th, 2010 at 12:39pm Woo hoo - at last count there were 32 comments!!!!! Keep it up folks!
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Batch

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Re: 5 Days Left To Comment to CMS on O2 Therapy!!!
Reply #12 - May 5^th, 2010 at 12:53pm

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

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AdoreInVegas CH.com Junior Offline Posts: 51 Sin City, Baby! Gender:	Re: 5 Days Left To Comment to CMS on O2 Therapy!!! Reply #13 - May 5^th, 2010 at 1:21pm Done!
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Batch

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Re: 4 Days Left To Comment to CMS on O2 Therapy!!!
Reply #14 - May 6^th, 2010 at 8:25am

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

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Re: 4 Days Left To Comment to CMS on O2 Therapy!!!
Reply #15 - May 6^th, 2010 at 10:03am

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

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Skyhawk5 CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1320 Ypsilanti, Mi. USA Gender:	Re: 4 Days Left To Comment to CMS on O2 Therapy!!! Reply #16 - May 6^th, 2010 at 11:43pm Done... Don
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Batch

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Re: 3 Days Left To Comment to CMS on O2 Therapy!!!
Reply #17 - May 7^th, 2010 at 1:18pm

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

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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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