Hey Bob,
Welcome to CH.com. You've come to the right place. We know what you've been going through and the good news is it doesn't need to be that way.
You've also obviously discovered the benefits of single payer, government run, socialized medicine... I have Tricare for Life so know what you're saying...
The most egregious coverage ruling by the Centers for Medicare and Medicaid (CMS) that refuses to cover expenses associated with the use of home oxygen therapy as an abortive for cluster headache among Medicare beneficiaries has been with us for quite a while.
While this coverage ruling came into effect prior to obamacare, it has become one of obamacare's poster children as an example of an unbelievably inept socialist bureaucracy making healthcare decisions that should be left to physicians.
I started a one-man crusade to have this coverage determination overturned in 2009 after developing and submitting a patent application for the method of procedure used with an oxygen demand valve to abort cluster headache rapidly and reliably.
As a fighter pilot with 24 years of Naval Service including 3 years in a government agency, it didn't take long to figure out where and who within CMS was responsible for this unbelievably stupid and egregious coverage determination... the Center for Clinical Standards and Quality (OCSQ).
As I was living in Northern VA less than 45 minutes from CMS at the time, I set up an appointment for a meeting at OCSQ to discuss this matter. The day before the meeting they called to cancel the meeting and instead, make it a telephone conference. That knocked all my preparations including slides and background data with several studies on the efficacy of oxygen therapy as an abortive for CH as medical evidence of efficacy into a cocked hat.
I may as well been calling into a pit of hissing cobra snakes... No amount of medical evidence would deter these bureaucrats. I'd done my homework and read the bio's of the CMS/OCSQ staff working coverage determinations... There were academics, long time civil servants, two with MPH (masters in public health), but no physicians with any clinical experience in treating patients with cluster headache. At the end of the call it was clear they had the power of the bureaucratic pen and had no intention of changing this coverage determination.
In early 2010 I discovered the American Headache Society (AHS) was mounting an effort to overturn this coverage determination headed by Dr. Fred D. Sheftell, M.D., President, AHS. I called him and offered my services... He told me he had assembled a "Top Gun" team of neurologists expert in the treatment of CH headed by Dr. David Dodick, M.D., Mayo Clinic and Dr. Deborah Friedman, M.D., M.P.H., a professor at UT Southwestern Medical Center, Dallas, TX.
After exchanging several email with Dr. Dodick and Dr. Friedman in early 2010, it was clear to me they had no idea of the bureaucratic inertia they were up against and that no amount of facts or medical evidence was going to overturn the CMS/OCSQ coverage determination.
I called Dr. Sheftell again in May of 2010 with a warning that his team of experts were about to run into a buzz saw of bureaucratic sharks and that he needed a nuclear option... like go to a kindred spirit in Congress who still had the balls to write an amendment to right this wrong. Again, Fred expressed confidence in his team...
When the draft coverage analysis came out for public comment in August of 2010, I alerted CHers here at CH.com to write CMS/OCSQ at their website in support of overturning this coverage determination. Many did just that...
The results were posted on 8 October, 2010 in the following: "CMS proposes that the evidence does not demonstrate that the home use of oxygen to treat cluster headache improves health outcomes in Medicare beneficiaries with cluster headache (CH). Therefore, we propose that home use of oxygen to treat CH is not reasonable and necessary under §1862(a)(1)(A) of the Social Security Act (the Act).
Dr. Dodick wrote a reclama to OCSQ, see attached. That reclama started out with...
"The American Headache Society strongly opposes CMS’s proposed decision of October 8, 2010 which would limit Medicare coverage for home oxygen to cluster headache patients enrolled in future clinical trials. We urge CMS to reconsider this decision, and we reassert our unequivocal position that oxygen therapy is both indicated and necessary for many cluster headache sufferers. Indeed it is the only available therapy appropriate for most Medicare patients suffering from this dreaded condition.
The proposed decision turns the concept of “evidence‐based medicine” on its head, producing a result that denies relief to patients in the most compelling circumstances... "
Although exceptionally well written, Dr. Dodick's reclama fell on def ears and had no effect... so we're still stuck with this terribly absurd coverage determination...
Back to the future... Had obamacare been repealed, there was another team of neurologists and cluster headache experts ready to jump in with the nuclear option of working with Congress to write an amendment to make coverage for home oxygen therapy as an abortive for CH available and in the process... take this coverage determination out of the hands of the bureaucrats at OCSQ...
So where does that leave us? Simple... pay cash for medical oxygen or welder's oxygen. They'll cost about the same...
Better yet, give the anti-inflammatory regimen with 10,000 IU/day vitamin D3 a try. You can pull down a pdf copy of the CH preventative treatment protocol for neurologists at the following link. Be sure to share a copy with your PCP or neurologist. That way you’re both singing from the same sheet music when you ask for the lab test of your 25(OH)D. Henry Lahore, a dear friend and the brains & brawn behind the VitaminDWiki website posted this treatment protocol for me on 21 January, 2017. As of the 21st of July, 2440 copies have been downloaded.
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You can also scan the following QR code with your smart phone and it will download a pdf copy of the treatment protocol to your phone for ready reference. The QR Scanner app is free. It takes less than 10 seconds to download and install.
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Well over 600 CHers have started this regimen since December of 2010... Better than 80% have experienced favorable results with a decrease in the frequency of their CH from 3 CH/day down to 3 CH/week. Better than 50% have experienced a lasting pain free response.
The really exciting news comes from CHers completing the online survey of CHers taking this regimen in 2016. The survey data from 2016 indicate better than 90% of CHers experienced a significant reduction in the frequency of their CH and better than 70% experienced a complete cessation of CH symptoms when following this treatment protocol. I attribute this increase in efficacy to the 2-week vitamin D3 loading schedule and the addition of a week to 10 day course of Benadryl (Diphenhydramine HCL) if there's no change in CH symptoms by day 10 of this regimen.
I realize it sounds too simple... That cluster headache is caused in part by a vitamin D3 deficiency... but it's true. Hundreds of CHers here at CH.com have provided the medical evidence attesting to the efficacy of vitamin D3 in preventing CH. Check out a few of their comments at the following links:
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to
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Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to
or
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to
or
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to
or
There are hundreds more just like this...
Take care and please keep us posted.
V/R, Batch
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Medicare and Oxygen???? (Read 3858 times)
