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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> Call to Action for All O2 therapy Users !!!
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1271129331

Message started by Batch on Apr 12th, 2010 at 11:28pm

Title: Call to Action for All O2 therapy Users !!!
Post by Batch on Apr 12th, 2010 at 11:28pm
Good people of Clusterville, as most of you know, cluster headache sufferers have always been their own strongest advocates when it comes to asking their physicians for treatments that work effectively in treating our disorder. 

For all you members and guests who use oxygen therapy and reside here in the US and its Territories, we have a golden opportunity to help ourselves and all the other CH'ers here in the US in a very big way.

Dr. Fred Sheftell, MD, President, American Headache Society and Dr. Robert C. Griggs, MD, FAAN, President, American Academy of Neurology have submitted a Formal Request to the Centers for Medicare & Medicaid Services (CMS) for a National Coverage Assessment and Determination on the use of home oxygen therapy for the cluster headache.

For those of you unaware of the CMS role in obtaining a prescription for oxygen therapy, they do not cover home oxygen therapy for Medicare beneficiaries suffering from cluster headache. 

That's right…  the biggest health insurance company in the world and the centerpiece for Obamacare, the US Government, will not cover the expense of oxygen therapy for your cluster headaches when you turn 65 and become a Medicare beneficiary…  This CMS policy also impacts many with Medicaid or private health insurance regardless of age as too many of these payers tend to follow CMS policy.

You may not be 65 at this point, but if you stick around long enough…  it will happen. 

Wouldn't it be nice to see some that payroll tax you pay into social security each month come back to you in Medicare coverage for oxygen therapy for your cluster headaches when you turn 65? 

Perhaps you'd prefer to pay for your oxygen therapy out of your pocket and have your payroll tax payments go to illegal aliens who will be granted amnesty and instant citizenship by a rogue congress and a president out to redistribute your wealth.

Here's the deal.  Opportunities like this, to really help yourself and others, don't come around all that often… 

You need to contact your Primary Care Physician and/or the neurologist who gave you the prescription for oxygen therapy as soon as possible this week and give them the following link:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Then ask them make a public comment to CMS strongly encouraging a coverage determination that covers the use of home oxygen therapy as a safe and effective method of intervention for your cluster headaches.

The comment period for this National Coverage Assessment and Determination review is 4/9/2010 through 5/9/2010…  That's less than 30 days, so notify your PCP and/or neurologist about this matter at the soonest and for sure not later than this coming Friday to give them ample time to respond.  I've already notified my doctor and I've provided a sample public comment below.

Please feel free to ask questions about this post if you have any…  Otherwise, a simple "Done" will do.  That way I can have a rough count until CMS publishes the public comments.

The action is over to all of you oxygen therapy users here in the US and its Territories…  please don't waste this opportunity to help yourself and other cluster headache sufferers.

Take care,

V/R, Batch

The CMS representative at CMS/OCSQ responsible for fielding these public comments is listed below:

Jean Stiller, MA
jean.stiller@cms.hhs.gov
1-410-786-0708


The format for the public comment to CMS follows:

Commenter:      Last Name, MD, First Name

Title:

Organization: 

Date:            04/--/2010

Comment:  (Note. It's best if your PCP/neurologist uses his or her own words in preparing the public comment to CMS on this CSA.  Having said that, the following example provides some of the key points that need to be made so I suggest you send this along with your request for their public comment if you have their email address.  Call or fax them with this message if they don't have an email address.)

1.  Thank your for the opportunity to provide a public comment on this important NCA for home oxygen therapy as an abortive for the cluster headache. 

As a primary care physician / neurologist with N + years experience in treating patients with episodic or chronic cluster headaches, I frequently see many instances where oxygen therapy is clearly indicated as a safe and effective method of intervention for this very painful disorder.   However, all too often home oxygen therapy is unavailable to these cluster headache sufferers as a result of the current CMS non-coverage determination for Medicare beneficiaries.  Coverage for home oxygen therapy is also frequently denied due to guideline criteria for the cluster headache used by too many medical insurance companies/payers that subscribe to same CMS policy on non-coverage for the cluster headache.

Moreover, for the payers and homecare providers that do cover or accept home oxygen therapy for the cluster headache, too many of them frequently confuse my prescriptions as being for supplemental oxygen for COPD sufferers and not as an abortive for the cluster headache.  As a result, some of my patients must endure needless delays and the additional expense of blood gas analysis or pulse oximetry for oxygen concentration when their oxygen saturation values are very normal and the diagnosis listed on the prescription is clearly cluster headache. 

In short, the prescriptions I write for home oxygen therapy for my cluster headache patients represent clear statements of need, written in accordance with my experience as a physician in treating this disorder and the latest standards of care for the treatment of the acute cluster headache, episodic or chronic.   

2.  My patients and I have also found that an oxygen flow rate of 15 liters/minute with a non-rebreathing oxygen mask appears to be the minimum flow rate and that higher oxygen flow rates appear to provide even greater efficacy with significantly shorter abort times without increasing the volume of oxygen consumed with each abort.  I also have patients who use an oxygen demand valve method of aborting their cluster headache with excellent results so would suggest this method be examined during this CSA.

3.  Finally, as a cost consideration, I've found that oxygen therapy costs are far less per abort if prescribed with the larger home use stationary M-sized oxygen cylinders than the smaller portable E-size cylinders.  Many of my patients who suffer an average of three cluster headaches a day require three of the M-size oxygen cylinders as a one-month's supply.   For my patients who work or have frequent requirements for local travel, I also prescribe the smaller E-size oxygen cylinders.  I've also found that successful oxygen therapy users require less of the more expensive triptan based abortives that I also prescribe as a bailout or rescue abortive when oxygen therapy is not available or permitted such as during airline travel.

Title: Re: Call to Action for All O2 therapy Users !!!
Post by Joe-P on Apr 13th, 2010 at 8:10am
Thanks for this information.  United we stand!  I think  the Dept. of Veterans Affairs (VA) also follows the CMS standards, so a change to their policy affects even more of us who suffer. 

Title: Re: Call to Action for All O2 therapy Users !!!
Post by QnHeartMM on Apr 13th, 2010 at 9:47am
Believe the link should be

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Thanks for posting Batch.


Title: Re: Call to Action for All O2 therapy Users !!!
Post by Brew on Apr 13th, 2010 at 10:57am
Done.

Title: Re: Call to Action for All O2 therapy Users !!!
Post by Brew on Apr 13th, 2010 at 11:22am
And done (both GP, who wrote my Rx for O2, and neurologist).

Title: Re: Call to Action for All O2 therapy Users !!!
Post by bejeeber on Apr 13th, 2010 at 12:48pm
Personally I'm setting any calls to action that include extremist political rants to "ignore".

I stopped reading when I got to this part:


Batch wrote on Apr 12th, 2010 at 11:28pm:
....a rogue congress and a president out to redistribute your wealth.


If you want the maximium number of people to read your entire post and join ranks with you on issues such as O2 for cluster headache, you might want to consider leaving the uncalled for right wing diatribes out of it.



Title: Re: Call to Action for All O2 therapy Users !!!
Post by Brew on Apr 13th, 2010 at 1:05pm
It's no secret where Batch's political ideas fall on the spectrum. His post here is NOT intended to be forwarded "as is" to doctors.

How about this? The quote below is, word for word, the letter I sent to both my GP and my neurologist, with specific info left for the writer to fill in. Feel free to copy and paste as necessary:


Quote:
Dear Dr. _______,

I'd like to ask you to do a favor, not just for me, your patient, but for all cluster headache sufferers. I ask that you make a public comment to CMS strongly encouraging a coverage determination that covers the use of home oxygen therapy as a safe and effective method of intervention for the treatment of cluster headaches.

The comment period for this National Coverage Assessment and Determination review is 4/9/2010 through 5/9/2010.

Here is the link:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

It's best if you use your own words in preparing the public comment to CMS on this CSA.  Having said that, the following example provides some of the key points that need to be made.

1.  Thank your for the opportunity to provide a public comment on this important NCA for home oxygen therapy as an abortive for the cluster headache.

As a neurologist with __ years experience in treating patients with episodic or chronic cluster headaches, I frequently see many instances where oxygen therapy is clearly indicated as a safe and effective method of intervention for this very painful disorder.   However, all too often home oxygen therapy is unavailable to these cluster headache sufferers as a result of the current CMS non-coverage determination for Medicare beneficiaries.  Coverage for home oxygen therapy is also frequently denied due to guideline criteria for the cluster headache used by too many medical insurance companies/payers that subscribe to same CMS policy on non-coverage for the cluster headache.

Moreover, for the payers and homecare providers that do cover or accept home oxygen therapy for the cluster headache, too many of them frequently confuse my prescriptions as being for supplemental oxygen for COPD sufferers and not as an abortive for the cluster headache.  As a result, some of my patients must endure needless delays and the additional expense of blood gas analysis or pulse oximetry for oxygen concentration when their oxygen saturation values are very normal and the diagnosis listed on the prescription is clearly cluster headache.

In short, the prescriptions I write for home oxygen therapy for my cluster headache patients represent clear statements of need, written in accordance with my experience as a physician in treating this disorder and the latest standards of care for the treatment of the acute cluster headache, episodic or chronic.   

2.  My patients and I have also found that an oxygen flow rate of 15 liters/minute with a non-rebreathing oxygen mask appears to be the minimum flow rate and that higher oxygen flow rates appear to provide even greater efficacy with significantly shorter abort times without increasing the volume of oxygen consumed with each abort.  I also have patients who use an oxygen demand valve method of aborting their cluster headache with excellent results so would suggest this method be examined during this CSA.

3.  Finally, as a cost consideration, I've found that oxygen therapy costs are far less per abort if prescribed with the larger home use stationary M-sized oxygen cylinders than the smaller portable E-size cylinders.  Many of my patients who suffer an average of three cluster headaches a day require three of the M-size oxygen cylinders as a one-month's supply.   For my patients who work or have frequent requirements for local travel, I also prescribe the smaller E-size oxygen cylinders.  I've also found that successful oxygen therapy users require less of the more expensive triptan based abortives that I also prescribe as a bailout or rescue abortive when oxygen therapy is not available or permitted such as during airline travel.

Thanks in advance,

Title: Re: Call to Action for All O2 therapy Users !!!
Post by Not4Hire on Apr 13th, 2010 at 6:52pm

bejeeber wrote on Apr 13th, 2010 at 12:48pm:
Personally I'm setting any calls to action that include extremist political rants to "ignore".

I stopped reading when I got to this part:


Batch wrote on Apr 12th, 2010 at 11:28pm:
....a rogue congress and a president out to redistribute your wealth.


If you want the maximium number of people to read your entire post and join ranks with you on issues such as O2 for cluster headache, you might want to consider leaving the uncalled for right wing diatribes out of it.



amen!  bro...

edit to say: Mr Batch:
While I realize you have a visual impairment which requires a larger font for YOU to see, (most) of the rest of us get along fine with the the default. It is ...irritating... to have to be

SHOUTED AT

when you post at a level of fontage that is generally posted to express outrage. I have taken to ignoring your posts completely due to the political
slant

but you sometimes have a useful message. I'm sure this will fall on ears that are plugged with teabags, but, for now, MY eyes are not  obscured by cataracts of intolerance. And again, your message is ...tolerable concerning the use of oxygen. Keep it up. But lower your voice...there are adults listening.

Title: Re: Call to Action for All O2 therapy Users !!!
Post by LasVegas on Apr 14th, 2010 at 12:00am
Batch, when I saw this posting yesterday, I did not reply with "done" because I do not have health insurance, so who would I write? 

But something i could do to get the word out is what I did do is copy/paste your posting to the Facebook group page "Cluster headaches" so that any of the 1,500+ members there that reside in the USA or territories with health insurance could help in our cause. 

"Every vote counts!" ;)

Title: Re: Call to Action for All O2 therapy Users !!!
Post by LasVegas on Apr 14th, 2010 at 5:03pm
bump til May 9th

Title: Re: Call to Action for All O2 therapy Users !!!
Post by Joni on Apr 14th, 2010 at 5:45pm
I agree with Bejeeber and Notforhire.  I quit reading also!  Is this about cluster headache O2 therapy or is it a slam to the liberals that also have HA's.  CHA's are not just a conservative issue.  I welcome discussion on politics as long as it is give and take.

Title: Re: Call to Action for All O2 therapy Users !!!
Post by Brew on Apr 14th, 2010 at 6:25pm
Any chance we might be able to get past the politics and write to our doctors? I'm not seeing a lot of "done."

Title: Re: Call to Action for All O2 therapy Users !!!
Post by Melissa on Apr 14th, 2010 at 8:36pm
Beings' this is the Medications, Treatments and Therapies portion of the website, please keep personal political opinions off this section. 

Thank you.

Title: Re: Call to Action for All O2 therapy Users !!!
Post by Skyhawk5 on Apr 14th, 2010 at 9:50pm
Done, will do.

Personal attacks people, please...

Don

Title: Re: Call to Action for All O2 therapy Users !!!
Post by jon019 on Apr 14th, 2010 at 10:29pm

Melissa wrote on Apr 14th, 2010 at 8:36pm:
Beings this is the Medications, Treatments and Therapies portion of the website, please keep personal political opinions off this section. 

Thank you.


Mel...Sis...thank you...and actually, one l..e..e..e..e..e..tle comma after "Beings"...and I'd swear that was Klaatu talkin'..... :D

Good giggles...and I aint even "dosed" yet....

Best,

Jon

Title: Re: Call to Action for All O2 therapy Users !!!
Post by Melissa on Apr 15th, 2010 at 7:06am

jon019 wrote on Apr 14th, 2010 at 10:29pm:

Melissa wrote on Apr 14th, 2010 at 8:36pm:
Beings this is the Medications, Treatments and Therapies portion of the website, please keep personal political opinions off this section. 

Thank you.


Mel...Sis...thank you...and actually, one l..e..e..e..e..e..tle comma after "Beings"...and I'd swear that was Klaatu talkin'..... :D

Good giggles...and I aint even "dosed" yet....

Best,

Jon

Aw, come on Jon, how do you know that isn't what I meant? ;)

Title: Re: Call to Action for All O2 therapy Users !!!
Post by LasVegas on Apr 15th, 2010 at 12:00pm
o2 is something we ALL agree is life saving for us....if you have a doctor and reside in the USA, please consider completing this task ASAP, time is running out!!!

Title: Re: Call to Action for All O2 therapy Users !!!
Post by DennisM1045 on Apr 16th, 2010 at 5:02pm
Done!

-Dennis-

Title: Re: Call to Action for All O2 therapy Users !!!
Post by Fox on Apr 19th, 2010 at 2:06pm
My HA specialist is Dr. Fred Sheftell.  Does this count as a "Done"?

Fox

Title: Re: Call to Action for All O2 therapy Users !!!
Post by LasVegas on Apr 24th, 2010 at 9:01pm
bump

Title: Re: Call to Action for All O2 therapy Users !!!
Post by Batch on May 4th, 2010 at 2:55pm
Good people of Clusterville.  There are less than 6 days remaining to submit public comments to the Centers for Medicare & Medicaid Services (CMS) on the National Coverage Analysis (NCA) of the use of home oxygen therapy for Cluster Headaches. 

So far, there has been only one public comment submitted.   That is not going to hack it…  A similar proposal to cover home oxygen therapy for cluster headaches had 16 public comments in 2005 and it was still shot down. 

The results of Dr. Goadsby's recent study of oxygen therapy provide the medical evidence needed to overturn the present non-coverage policy for home oxygen therapy for cluster headaches.  Now is the time for action on your part.  Comment now in favor of overturning the present non-coverage policy or prepare to kiss your existing coverage good by.

The deadline to submit public comments is this Sunday, 9 May 2010.  Call or email the physician or neurologist who prescribed your oxygen therapy and urge them to make a public comment to CMS then sit down and draft up comments of your own to submit. 

Opportunities like this to really help ourselves as cluster headache sufferers are rare as hen's teeth and only come around once in a blue moon.

Please do yourself and other fellow US cluster headache sufferers, regardless of age, a favor and submit your own public comments in favor of Medicare coverage for home oxygen therapy expenses for cluster headaches.  You'll all turn 65 soon enough.

There is also a very real and very frightening potential outcome from this NCA for home oxygen therapy for cluster headaches.  The cluster headache survey we took in 2008 indicated 35% of the respondents indicated their medical insurance companies would not cover the expense of home oxygen therapy for cluster headaches. 

If this NCA results in a continuation of the present non-coverage policy for home oxygen therapy for cluster headaches, such a determination could easily result in more insurance companies following the Centers for Medicare and Medicaid non-coverage policy and you'll no longer have coverage for this very effective abortive therapy. 

In short, if the present non-coverage policy is not overturned, many of you could easily receive a letter from your medical insurance company telling you they will no longer cover the expense of home oxygen therapy regardless of your age…

Keep your comments simple and to the point.  Tell CMS how safe and effective oxygen therapy is in aborting the excruciating pain of your cluster headache attacks.  Comment on the number of years your doctor has prescribed home oxygen therapy for your cluster headaches.  Let them know the impact on your quality of life if the NCA results in a continuation of the non-coverage determination.

The link to submit your public comment follows:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

I'll be submitting my public comments tonight.

Take care and please don't let this golden opportunity pass you by.

V/R, Batch

Title: Re: Call to Action for All O2 therapy Users !!!
Post by bonkers on May 5th, 2010 at 5:32am
Well, Batch. . . it looks like you took the "golden opportunity" to limit your political comments in this latest message. That's good! Now if you can just find a way to make the words a little smaller, I think you'd be doing most of us a favor.

Thanks,

Ron

Title: Re: Call to Action for All O2 therapy Users !!!
Post by itotka on May 5th, 2010 at 5:53am
Fingers crossed in the background. Good luck guys!

Title: Re: Call to Action for All O2 therapy Users !!!
Post by Batch on May 5th, 2010 at 10:18am
István my friend,

Thank you for the kind thoughts.  Things are looking up.  There are 21 public comments to CMS on the NCA of oxygen therapy for the cluster headache so far as of this morning. 

Good on OUCH for getting out the mass email on this topic.

It appears we have at least three medical professionals responding.  That's good, but we still need more comments from neurologists and PCPs who treat patients with our disorder and prescribe oxygen therapy as the first abortive of choice.

Take care and thanks again

V/R, batch

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