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Advocacy Opportunity

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We need your help. This is a chance for everyone to be an advocate for the cluster community.

Clusterbusters along with representatives from the Alliance for Headache Disorders Advocacy (AHDA) will be visiting the offices of CMS during the Headache on the Hill event in April.

We will be continuing our efforts to get CMS to reconsider their determination of non-coverage of oxygen for Americans covered by Medicare and Medicaid.

We will be following up on the letter that was sent by the Senators asking for reconsideration and our continuing discussions with CMS.

Their determination is based upon their feelings that their is not enough evidence of 02Â’s safety in the Medicare eligible age group. They have in the past requested/required a large scale study with people over the age of 62 and for many reasons this will most likely never take place. Three of these reasons would be:

1.      People of that age have most likely used 02 in the past which would disqualify them from a study of this kind.

2.      If they could be found, it would be unethical for doctors to give placebo air to hundreds of cluster patients, knowing it would not help.

3.      A phase 3 study would cost millions of dollars that do not exist to test something that has been used for over 50 years as the first line of acute treatment of cluster headaches.

They need to hear from the patients themselves. We want to bring a stack of letters with us to the meeting detailing the need, the usefulness and the safety of 02 for cluster patients.

There is no reason for people that have been safely using 02 for years, to end up with no coverage once they retire.

This decision also means that people on Medicaid do not get coverage. For this reason, the most vulnerable and those that the financial burden would cause the most harm are greatly impacted.

Ironically, Imitrex which is much more expensive as well as contra-indicated in this same age group, is covered.

You would think that the safest and least expensive treatment would be the treatment of choice but this is not the case. Our congress agrees with us and now we must convince the one and only U.S Government agency that does not accept these facts, to hear us and act to change their determination.

I would ask everyone to write a letter and address it to the following office and person:

Tamara Sryek-Jensen

Director-Coverage and Analysis Group

C/O:

Centers for Medicare and Medicaid Services (CMS)

Center for Clinical Standards and Quality

7500 Security Boulevard

Baltimore, MD 21244

Letters from current Medicare and Medicaid recipients are most important but letters from everyone are needed.

A couple of points you might want to make:

If you are in these affected groups, please tell Ms. Sryek-Jensen if you have been using 02 safely and itÂ’s effectiveness. Tell her how long you have been using it. How much of a financial strain it would be, or is, that it is not covered.

Mention how important 02 is in your life. You can mention if you feel it is safer for you to use than Imitrex or other acute treatments.

We need to let them know how important 02 is to you and your family.

If you have had trouble getting your insurance company covering 02, one reason is probably because they are falling back upon this determination from CMS. This decision has far reaching implications.

If you are not of eligible age yet, you will be some day.

What I would like everyone to do is write a letter, print it and sign it and send it to us so we can deliver them when we meet them.

We need to make sure that all the letters get entered into the latest appeal and do not get lost in the process.

Hard copy letters with signatures are important and the more we have the bigger the statement we will be making.

This is your opportunity to make a difference in the lives of every cluster sufferer in the U.S.

The length of the letter does not matter as much as the letter itself and the stand you are taking. Please get it to us before April 14, 2015

Please write the letter and send it to us at:

Clusterbusters

P.O. Box 574

Lombard, Il

60148

I will make sure they are entered into the records and hopefully make an appearance in the congressional hearings we will be requesting.

Thank you

Bob Wold

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Bob,

Thanks for the info.  As a side note and support for your request to get O2 covered.  I can attest that the VA covers O2 for service connected vets that have CH. 

Sadly, suing the government seems to be about the only corrective course for gov programs running afoul of their intent.  Dunno if someone needs to sue medicare / medicaid to get them to change their position?  I cringe at saying those words, but I read nearly every day now that some gov entity is suing another gov entity to get something changed. :(

J

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Hi, I was not aware of ClusterBusters until less than 24hrs ago. Though oxygen does not work for me and I have tried this on separate occasions thru out my 25yrs of cluster AND migraine headaches I believe in its values. Where ever I am, hospital or in contact within any medical professional I am asked every time, every single time immediately, have you tried oxygen. It's rediculus that in the past 25yrs oxygen is not recognized. Though unwanted, addictidive and not always by choice, approved by the FDA is good to go. It's their lobbiest and pure and utter GREED. Oxygen does work and their is no one I ever herd say, "going to score some O2 man, gots to get it"'. When's the last time the media covered an oxygen overdose??? I have my first appointment with a respected pain management Dr. this Monday and I am curious to see if he is only for the FDA drugs mostly because of social, pier and employment reasons. The hours are ticking for this meeting and now learning and understanding the usefulness of triptipans I will bring this up not to mention that I have used marjuana successfully when it was the right strain but I can't afford it. If he is not open to these options I will not continue with him. I can see it from a medical proffesionally poin, like my neurologist, but don't respect them based on the societal opinions of these, for us sufferers, pain relievers. The professionals going against the "norm" are pioneers and they are looked down upon by the boards. If it works than please let us live. If a magic mushroom is the answer if I am successful in a suicide attempt than mushrooms it is.

If I can help in advocacy I will do my best. I do advocated for NAMI and the bully breed of dogs and understand the strong stigma they both receive. Especially for "pitbulls" it's disgusting still but with having two myself and proper education and public displays of awareness anything can and will overcome. Look at how society is growing to accept and adapt to marjuanas usefulness. Its very hard work and consistent public displays of awareness along along with the righ team of people to be successful in anything. Their will always be skepticals.

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