Advocacy in Action: AHS Proposes Changes to Coverage for Home-use Oxygen for Cluster Headache Attacks

Back in September of 2020, AHS and its members used their voice and platform to advocate for patients with cluster headache and it worked!

Home-use oxygen for the treatment of cluster headache has not been a coverable benefit for Medicare and Medicaid beneficiaries. This is despite the therapy being a proven safe and effective way to abort a cluster headache attack.

Since the policy became public in 2011, advocacy organizations like the Alliance for Headache Disorders Advocacy and AHS have strongly advocated for its repeal. In January 2019, a formal appeal was filed to CMS. In August 2020, CMS initiated the review with a 30-day public comment period on this policy to determine if home use of oxygen is reasonable and necessary under their Medicare & Medicaid programs.

In September 2020, AHS members put their advocacy into action! AHS members submitted public comments to CMS requesting the coverage for home-use oxygen. Over 200 public comments were received! The American Headache Society and American Migraine Foundation submitted a joint public comment as well.

On July 2, 2021 CMS published their response to our collective appeal via a “Proposed Decision Memo”. The memo highlights significant progress for the coverage of home-use oxygen for the acute treatment of cluster headache attacks for Medicare and Medicaid beneficiaries.

Bottom line: Home-use oxygen for the treatment of cluster headache attacks is now a coverable benefit, but there is still work to finalize this process!

We are so appreciative that home use oxygen for the treatment of cluster headache attacks is now a coverable benefit. However, additional clarifications and changes are needed. CMS is currently accepting public comments prior to finalizing the policy.

The clarifications and recommended changes include:

• All Medicare patients with a cluster headache diagnosis should be eligible for insurance covered home-use oxygen, not just “select” patients.
• The coverage determination should be made at the CMS/National level and not moved down to the individual Medicare Administrative Contractors (MAC).
• For the acute treatment of cluster headache attacks with home-use oxygen, blood gas studies should not be required prior to approval for insurance coverage.

We need your professional voice in the advocacy conversation. Please submit a short public comment here. The deadline to use your platform as a healthcare professional and make your voice heard is August 1, 2021.

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. CMS is looking for unique, individual perspectives and evidence to support their decision and recommend changes. Here are some tips and prompts for writing a moving, informative comment:

• 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?
• Thank CMS for their proposed decision memo to provide coverage for home-use oxygen for the treatment of cluster headache attacks.
• Provide the rationale for recommended changes:
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  • Explain why ALL Medicare patients with a cluster headache diagnosis should be eligible for insurance covered home-use oxygen, not just “select” patients.
  • Explain the importance of ensuring that the coverage determination is made at the CMS/National level and not moved down to the individual Medicare Administrative Contractors (MAC) who could establish their own Local Coverage Determination (LCD) policies.
  • Explain why blood gas studies should not be required prior to approval for insurance coverage for the treatment of cluster headache attacks with home-use oxygen.
• Describe the positive impact of CMS coverage for home-use oxygen on patients’ lives.
• End with a clear call to action for CMS to make the recommended clarifications and revisions prior to finalization of the policy for all Medicare and Medicaid beneficiaries with the diagnosis of cluster headache to have access to home-use oxygen.

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 living with cluster headache.