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Oxygen for Cluster: Update on Demanding Oxygen for Cluster Patients

Demand Oxygen for Cluster

When the headache and migraine community learned of an opportunity to demand oxygen for cluster, we mobilized and acted quickly. This advocacy action was part of the Centers for Medicare & Medicaid Services (CMS) process on approving home use of high-flow oxygen therapy for the acute treatment of cluster headache attack. 

Oxygen for Cluster 

In 2006, CMS denied covering oxygen for cluster. In 2011, it was again denied. Our community has never taken no for an answer and a request for reconsideration was filed in January 2019 by the Alliance for Headache Disorders Advocacy (AHDA).  CMS rarely reevaluates previous rulings and only does so when there is new data to support an appeal. Eighteen months after the last formal appeal, CMS announced a public comment period. With no advance notice and a 30-day deadline, our community gathered scientific data and patient comments for CMS.

Under the leadership of Clusterbusters and AHDA, CHAMP and its participants sprung into action.

  • AHDA’s letter with new data can be read here. 
  • Clusterbusters held an interactive workshop during its annual conference to help patients craft responses and had new data to make a case for CMS to overturn their previous decisions.
  • CHAMP submitted new data from its Headache Disease Patient Access Survey to support the efficacy and use of at home oxygen for those living with cluster. 
  • Patients without cluster headache included their voices by signing a Letter of Support and used data from Migraine.com‘s 2019 Migraine in America survey
  • Additionally, multiple organizations, along with researchers and headache specialists, provided new data on the safety and efficacy of oxygen therapy.

Rapid Response

By the deadline, a total of 157 letters of support and 257 signatures from supporters of the cluster community were collected. The average response CMS receives from the public is 100 comments. Once again, the headache and migraine community rose to the challenge in the hopes our combined voices cannot be ignored. Unfortunately, per CMS’ timeline, no new information will be provided until February 2021. 

CHAMP Demands Action from CMS

CHAMP continues to demand CMS to listen to the community. Medicare and medicaid recipient need CMS to appropriately evaluate the data on need, safety and efficacy. We call on CMS to immediately cover home use of high-flow oxygen for treatment of cluster headache attacks.      

We thank Clusterbusters and AHDA for leading this incredible effort as well as CHAMP participants for submitting comments. More importantly we thank the greater community for participating. When we work together, we achieve so much more. 

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