Advocacy in Action: Home-use Oxygen for Cluster Headache Attacks

Use your voice and platform to stand with cluster headache patients

As many of you know, the Centers for Medicare & Medicaid Services (CMS) currently does not provide coverage for home oxygen for people living with cluster headache. As a result, many insurance companies also deny oxygen therapy for cluster attacks. This is despite the therapy being a proven safe and effective way to abort an attack.

Since the policy became public in 2011, groups like the Alliance for Headache Disorders Advocacy advocated for its repeal at the annual Headache on the Hill advocacy event. On August 17, 2020, CMS initiated a 30-day review on this policy to determine if home use of oxygen is reasonable and necessary under their Medicare & Medicaid programs.

The American Headache Society and American Migraine Foundation will jointly submit a public comment to the CMS requesting coverage for home-use oxygen. Our cluster headache patients need us now. Here are a few ways our members can join the conversation and advocate for coverage of home-use oxygen. The deadline to make your voice heard is September 16, 2020.

If you have a second, engage with the campaign on social media

The campaign is uniting under #O2forCluster on all channels, but a lot of the conversation is taking place on Twitter. Scroll through the hashtag and favorite, retweet and amplify the message so the CMS knows that healthcare providers stand with patients. The Society will be posting supporting materials between now and the deadline, but some other Twitter accounts to follow for ongoing coverage are:  @AHDAOrg, @HeadacheDoc, @Cluster_buster and @AMFMigraine.

If you have a minute, create your own social media post

Creating your own social media post helps add a healthcare provider’s perspective to the conversation. Here are some sample Twitter posts:

  • #ClusterHeadache is characterized by brief, excruciatingly severe headache attacks that recur between 1-8 times per day. @CMSGov should increase access to effective treatments for #CH by covering home-use oxygen. #O2forCluster @ahsheadache
  • Home-use oxygen is an evidence-based, effective, and safe treatment for cluster headache attacks. @CMSGOV, please cover home-use oxygen for cluster attacks to make a difference for the millions living with #clusterheadache. #O2forCluster. @ahsheadache

Be sure to use the hashtag #O2forCluster. Tag CMS @CMSGov so they get notified. Please also tag the American Headache Society @AHSHeadache so we can amplify your message further.

We need your professional voice in the advocacy conversation. If you more time, please submit a short public comment here

AHS is asking its members and other healthcare professionals to participate in this open comment period. The process is straightforward and the letter itself should only be around 300 words. Here are some tips and prompts for writing a moving, informative letter:

  • Start by introducing yourself and your professional background: How long have you been practicing? How many patients with cluster headache do you see?
  • What does a cluster headache attack look like?
    • What’s the impact and burden of the disease?
  • What are evidence-based treatment options for acute attacks?
  • What obstacles do you encounter taking care of this patient population?
  • Describe the rationale for CMS to provide coverage for home-use oxygen for cluster.
    • What do we as healthcare professionals know about the efficacy and safety of oxygen as acute treatment for cluster headache attacks?
    • How would CMS providing coverage for home-use oxygen affect patients’ lives?
  • End with a clear call to action for the CMS to make home-use oxygen more accessible to people with cluster headache.

Note that all comments submitted to CMS will be posted publicly on the CMS website. Please only share information you are comfortable with appearing online.

Thank you for joining us in supporting our patients with cluster headache.

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