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Brain on fire

Medicare, Medicaid oxygen for us now

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Brain on Fire,

Great idea, wrong audience.  I teamed up with two Top Gun heavy hitter neurologists from American Headache Society, Dr. Deborah Friedman, MD, MPH, FAAN and Dr. David Dodick, MD in 2009 to overturn the CMS non-coverage determination that prevents Medicare beneficiaries from obtaining oxygen therapy as an abortive for cluster headache.  We assembled what we thought was significant body of medical evidence attesting to the efficacy and safety of oxygen therapy as a CH abortive.  It included all the known studies, papers by Dr. Lee Kudrow, MD and other noted neurologists with hundreds of years accumulated experience with oxygen therapy as an effective abortive for patients with CH.

Unfortunately, the unelected, monkey-ass bureaucrats at CMS/OCSQ (Center for Clinical Standards and Quality) rule the roost when it comes to non-coverage determinations.  They wouldn't listen to real medical evidence and logic if it was coming from the burning bush or bit them on the ass.  They methodically disqualified every study provided for not adhering to all the latest rules of medical evidence then pronounced there was insufficient medical evidence to reverse the existing non-coverage determination for home oxygen therapy for Medicare and Medicaid beneficiaries with CH.  

Congress and your local representatives?  NFW!  The probability of finding meaningful support for our cause in Congress in the form of favorable legislation for oxygen therapy, ranks right up there with finding a snowflake in hell.  As soon as most politicians are elected they get a lobotomy followed by a chemical memory eraser.  They have only one goal after being elected... Getting re-elected.

Re-election requires money and you'll never guess who fills re-election campaign war chests with the most money.  The Pharmaceuticals/Health Products industries lead by the Big Pharmas to the tune of $4.2 Trillion dollars spent on Congress over the last 20 years.   https://www.opensecrets.org/lobby/top.php?indexType=i&showYear=a

And, of course, the Big Pharmas don't like anything used in healthcare if its not patented for profit.  Oxygen is a USP so cannot be patented.  Big Pharma's solution to this problem is to have their K street lobbyists write legislation for Congress that makes it difficult to obtain home medical oxygen.  This legislation is written vaguely so as to allow government agencies like HHS and their minions at CMS to write regulations making it more difficult for a physician to prescribe oxygen therapy than an Rx for opiates.  Their final hammer is to make coverage determinations on what medical treatments CMS will cover.

Our only solution it to go to the top and the Twitter-in-Chief, President Trump.  The best way to do this is to contact the White House at the following link.  https://www.whitehouse.gov/contact/

It will give you the option of "Contact the President" or "Help with a Federal Agency."  Select the second option, fill in the blanks then in the final blank "What would you like to say" start out with the regulations governing home oxygen therapy for cluster headache sufferers are too restrictive to the point Medicare and Medicaid beneficiaries with cluster headache are not covered.  Point out that President Trump made a promise to the American people he would help cut the red tape and restrictive regulations that make things like home oxygen therapy so costly and difficult to obtain. 

Give your own story in your own words like how you're forced to use Triptans like Imitrex costing $900/month for the nine shots per month covered under Medicare as an abortive but the estimated $100/month for home oxygen therapy is not covered. 

The average cluster headache sufferer has three of these terribly painful headaches a day, 90 a month, yet Medicare will only cover relief for 9 of these terrible headaches a month with Imitrex. Home oxygen therapy would cost much less at $90 to $100 per month and could be used for all cluster headaches not just 9 a month with Imitrex, then be forced to suffer agonizing pain during 80 more of these cluster headaches without any relief. 

Ask why an expensive pharmaceutical like Imitrex is covered as a cluster headache abortive for Medicare and Medicaid beneficiaries, yet USP oxygen is not. 

Ask if existing legislation and regulations governing coverage for home oxygen therapy has been influenced by Big Pharma to their advantage in the market place?

The simple solution is to make home oxygen therapy an OTC item. This would eliminate burdensome regulations, increase competition and ultimately lower the cost of home oxygen therapy.  The savings at HHS/CMS would also be huge as a large part of the CMS budget is spent administering prescriptions for oxygen and the durable medical equipment associated with home oxygen therapy for Americans with COPD.  The American Lung Association (ALA) thinks there may be as many as 24 million American adults living with COPD and that doesn't count Americans with Bronchitis or Emphysema who also need supplemental oxygen.

Again, use your own words.  If one or two up to maybe five CHers go to this White House website and complain about home oxygen therapy, it's likely nothing will happen.  If the number of hits goes above 50, they have tracking systems that will flag this topic.  Then the odds of meaningful action go up big time.

Take care... and Take Action.

V/R, Batch

Edited by Batch

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Warning! Problems with the online plan finder for Part D shown here

CMS released a draft version of the Medicare and You Handbook for 2019 online. It contained inaccuracies that were misleading in regards to original Medicare vs Medicare Advantage Plans. In original Medicare beneficiaries can see anyone who accepts Medicare (accepting Medicare assignment rarely varies). In Medicare Advantage Plans you must use preferred providers. The draft version was, to say the least showing favor to the Advantage Plans by providing misleading info. You can read about it & the groups who had it corrected on thier sites: Justice on Aging: Medicare Rights Center: Center for Medicare Advocacy.

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This is a  problem that is nonsensical until you subscribe to Batch's "follow the money theory".  I too ascribe to this after a career dealing with nonsensical policies.  "when things do not make sense, follow the money.  The disallowing of oxygen therapy for treating cluster headaches smacks in the face of well done science.  Many new medications, devices and implants have been approved for reimbursement with a relative paucity of evidence compared to oxygen therapy for treating cluster headaches.  It is unfair, irrational and inhumane.  The cohort of cluster patients needing oxygen is very small and most meds used to treat or prevent attacks are off patent so I do not believe the resistance is coming from industry.  It is my belief the problem is government agencies themselves.  This is because Oxygen therapy is largely uncovered by government programs and there are millions of oxygen users out there with COPD, respiratory failure and the like.  If CMS were to set a precedent by covering clusterheads then they would be on the hook for everyone else on O2 which is a huge spend.  Regardless of the reason this denial continues it sucks and I hope the decision makers spend a long time in head with the beast.  Then again I would not wish the pain on my worst enemy. 

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