After two decades of advocacy to get the Centers for Medicare and Medicaid Services (CMS) to provide home oxygen coverage for cluster headaches, Clusterbusters is ecstatic to share they will soon cover this first-line treatment. We’re thrilled to celebrate this huge win for the cluster headache community, but it’s not over yet. The Proposed Decision Memo issued by CMS on July 2, 2021, has some language and policy issues we need your help to address.
The public comment period to share your thoughts on this decision is coming to a close tomorrow, Saturday, July 31, 2021, at 5 pm Eastern Time. We’re excited about this turn of events, but your comments can help us ensure that ALL Medicare patients with cluster headaches have access to home oxygen use.
We encourage everyone to submit a comment to CMS about their proposal to cover oxygen and consider mentioning the following concerns along with your experience with cluster headaches and oxygen therapy.
The Problem with “Selected Individuals” for Oxygen Eligibility
The Proposed Decision Memo says there is a benefit to using oxygen therapy for “selected individuals” with cluster headaches. The document goes on to say that oxygen therapy might be optimal for “selected patients.” The issue is that every clusterhead needs to try high-flow oxygen, not a “selected” few. That wording will create a problem for both patients and doctors—Your neurologist might hesitate to prescribe you oxygen because they won’t know if you qualify to try it. Many patients must fight tooth and nail to get their physician to write a script for high flow oxygen, and this phrasing can exacerbate that issue.
We believe (and the literature and evidence back us on this) that every patient should try home oxygen for cluster headaches upon diagnosis. Our advocacy goal has been to ensure you receive a prescription for high-flow oxygen with a non-rebreather mask as soon as you are diagnosed. Oxygen comes with little to no complications, and when used correctly, aborts attacks for a majority of clusterheads.
Removing this language will ensure everyone with cluster headaches is eligible to try oxygen without breaking the bank.
A National Determination Will Give All Americans with CH Access to Oxygen
Another problem with the CMS memo is that the current proposal leaves coverage determination up to the four individuals who act as Medicare Administrative Contractors (MACs). These people would make their own decision on home oxygen coverage for cluster headaches in what are called Local Coverage Determination (LCD) policies in their territories. That means that someone in one region of the U.S. with Medicare could get oxygen while Medicare might deny someone else in another.
We want CMS to make a National Determination so that every American with cluster headaches can try home oxygen to abort their attacks.
Demonstrating Oxygen Effectiveness at ER or Physician’s Office
The Proposed Decision Memo also notes a potential requirement to demonstrate that oxygen therapy works to abort cluster headaches by making clusterheads go to the Emergency Department (ED) or their physician’s office during an attack. If you have cluster headaches, you know how ridiculous that sounds. Attacks come on quickly and leave you unable to concentrate on anything but the pain, let alone a drive to your doctor or the ED. It’s a waste of money as you’ll have to pay a co-pay, and wherever you go likely won’t have the oxygen set up that you need to try it correctly.
You need a non-rebreather mask (no holes near the nose), a flow rate of at least 15 lpm, and to use one of two breathing techniques for 15-20 minutes to properly abort a cluster headache attack. Many neurologists don’t know how to coach a patient on how to use oxygen therapy for cluster headaches, so it’s doubtful the average Joe working at your local ED will understand how to administer it to you. That means you won’t qualify for home oxygen use because they will think it doesn’t work for you.
We’ve Come a Long Way for Insurance-Covered Home Oxygen for Cluster Headaches—We still need your help!
CMS may not make the changes we’ve suggested, but they will read every comment submitted during the open comment period. The deadline to submit your comment is tomorrow, July 31, at 5 pm Eastern Time. Please help us make our voices heard in eliminating ALL barriers to home oxygen use for cluster headaches.