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Oxygen for Cluster Headache: Ask Your Senator to Sign!

A few hours remain to ask your senator to sign the letter requesting Medicare to reconsider covering oxygen for cluster headache! Please take 60 seconds to do so: just follow this link. The deadline for senators to sign has been extended to tomorrow, Thursday, May 22 at 5 p.m. ET.

The following senators have already signed on:

  • Coons (D-DE)
  • Johanns (R-NE)
  • Inhofe (R-OK)
  • Durbin (D-IL)
  • Tester (D-MN)
  • Warren (D-MA)
  • Markey (D-MA)
  • Fischer (R-NE)
  • Merkley (D-OR)
  • Manchin (D-WV)
  • Pryor (D-AR)

Several more are on the verge of signing, but need a little encouragement. Please make your voice heard — it will literally take a minute to improve the lives of people who are severely disabled by this horrendously painful headache disorder.

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An Urgent Request for Cluster Headache Treatment

Oxygen is one of the few effective cluster headache treatments, a viciously painful headache disorder that can be disabling. Several years ago, Medicare decided to stop covering it for cluster patients. The American Headache Society appealed to no avail. Now, Nebraska Senator Johanns and Delaware Senator Coons are trying to get the decision reversed and are currently circulating a letter for other senators to sign. The more senators who sign the letter, the higher the chance of success.

Please contact your senator TODAY to ask them to sign the letter requesting that Medicare reconsider covering oxygen for cluster headache treatment. And I do mean today — senators must sign the letter before 5 p.m. ET on Monday, May 19 Thursday, May 22. All you have to do is follow this link, fill out the form and click “submit.” The next page lists your senators as recipients and has a letter already written. You can edit the letter, if you’d like, or just add your name at the bottom and click “submit.” That’s it. I just did it and it literally took less than a minute.

Even if you don’t have cluster headache, please submit a request in the spirit of solidarity. Any recognition of the severity of any headache disorder and improving access to treatment is a win for all of us.

5/19/14: The deadline for senators to sign has been extended from today to Thursday. If you haven’t submitted your comment, you still have time! As of 8 p.m. ET today, nine senators have agreed to sign the letter.

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Your Five Minutes Could Increase NIH Funding for Headache Research

Urge your US House of Representatives member to support increasing the National Institutes of Health’s headache research funding by sending this pre-written e-mail no later than Monday, March 17. That’s all that’s required, though you are encouraged to include a personal note on how headache disorders affect you.

According to the National Headache Foundation, “NIH grants for migraine total approximately $13M per year, representing less than .05% of the total NIH budget. Very little headache research apart from migraine is funded and the NIH has no institute, center, or study section wholly devoted to pain, let alone headache disorders.”

This letter from the Alliance for Headache Disorders Advocacy has details on the initiative:

AHDA Congressional Action Alert: Increase NIH funding for Headache Research

Dear AHDA advocates –

Well, the key moment has arrived for you to contact your Member of the US House of Representatives to take action for increasing NIH research for headache disorders.

A Dear Colleague letter was sent Monday, March 10, by Representatives Peter Welch and James Moran to all House offices, urging all Members of the House to co-sign a letter to Representatives David Obey and James Walsh. The Obey/Walsh letter requests inclusion of language that supports headache research to be appended to the FY09 appropriations bill for NIH. (For details, see the AHDA homepage.)

The more Representatives that co-sign the Obey/Walsh letter, the greater are the chances that the language will be included. The Obey/Walsh letter must be submitted with signatures by 3/19. This unfortunate deadline was a late-breaking surprise for us, so we have little more than a week to get as many signatures as possible. Please use the space below to compose your message to your Representative and urge her/him to co-sign the Obey/Walsh letter now.

We are also working on a Senate Dear Colleague letter right now and we will let you know when the time is right for you to contact your Senators too.

Through collective advocacy we will improve the care for individuals with headache disorders. Thanks very much for your help.

Best regards to you all,

Bob

Robert Shapiro, MD, PhD; Burlington, Vermont
William Young, MD; Philadelphia, Pennsylvania
Brad Klein, MD, MBA; Philadelphia, Pennsylvania
Teri Robert, PhD; Washington, West Virginia