News & Research, Society, Treatment

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.

Community, News & Research, Society, Treatment

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.


Please Help Reduce Medicare Drug Confusion

Medicare drug coverage sign-up began yesterday. While you may not be enrolling right now, the Great Government Health Care Information Debacle of 2005 affects all Americans.

Anyone who has ever looked for information on a government website knows that going to “The Official U.S. Government Site for People with Medicare” will only confuse them more. Doesn’t anyone in the federal government recognize that their websites suck? Section titles make no sense unless you work in the department that created them, navigation is convoluted, the writing is totally inaccessible and every page needs its own acronym dictionary.

Furthermore, who thought it was a good idea to make a website the primary source of information for people 65 and older? Age isn’t necessarily a predictor of computer literacy, but, based on statistics from June 2005, a report from the Pew Internet and American Life Project states that only 26% of Americans age 65 and older go online. That only leaves 74% in the dark.

Figuring out health care benefits is always stressful. I can’t count the number of times that I’ve been in tears because something that I thought was covered isn’t or because I can’t get a certain drug I need. Imagine that exasperation and fear on top of knowing that this will be your health insurance provider for the rest of your life.

My request to you all is simple. If you know someone who is struggling to figure out their Medicare drug benefit, even if it’s a neighbor you talk to five times a year, please help. Use your computer knowledge to bypass the government’s Medicare site. You can find sites with less confusing information, news coverage and local in-person assistance. Print out the information you find and pass it along or point internet-savvy seniors to one of the following links.

  • Some drug store chains, like CVS, Walgreens and Wal-Mart, are providing face-to-face chats, brochures and town halls to help out (and perhaps win the business of the people they help). Each company’s website also has detailed drug benefit information.
  • NPR has a thorough Q & A with links to relevant stories at the end.
  • USA Today offers an easy guide to do a basic search on the Medicare site.
  • Look for guides or meeting announcements on your local newspaper or TV stations’ websites.