Relief Out of Reach for Patients with Cluster Headache

By Eileen Brewer

Imagine if a painfully debilitating condition was best treated with good, old-fashioned oxygen.  Simple, right?  

Not for people living with cluster headache.

Excruciating and relentless, cluster headache has been described as worse than a kidney stone, pancreatitis or even getting shot.  As the name suggests, cluster headache entails intense headaches that occur in bouts, or clusters. Attack periods can last for weeks or even months, with people experiencing multiple attacks a day.  The physical and emotional toll is debilitating to patients.  

High flow oxygen is often the only source of relief during attacks. Oxygen, administered using a facemask connected to a portable canister, is a safe, relatively inexpensive and highly effective acute treatment. It works quickly and is accessible from home, two essential elements when treating a condition with intense but brief attacks. 

Despite oxygen’s effectiveness, it presents one critical barrier. At-home use for cluster headache isn’t covered by the Centers for Medicare and Medicaid Services.

The agency has cited a lack of clinical trial data as its rationale, suggesting that a larger scale trial should be conducted in Medicare populations. While trials data are valuable, the suggestion presents a few problems. Given how rare cluster headache is, enrolling enough patients for a large clinical trial would be a feat. The pool of potential participants would be limited even further if the trial looked only at traditional Medicare beneficiaries, people age 65 or older. Funding poses another significant barrier, as few institutions want to finance research for a treatment they already know works. 

In the absence of coverage for at home oxygen, the Centers for Medicare and Medicaid Services advises patients to go to the emergency room for treatment during an attack. The solution just isn’t feasible. A patient having six or seven attacks a day can’t go to the emergency room again and again. After travel and wait time, a patient’s attack could very well be over by the time a doctor is available. 

And during the coronavirus pandemic, when emergency room visits come with additional risks, every effort should be made to treat patients from home. 

It’s not just patients and advocates who see the value of high flow oxygen at home for cluster headache. Health care professionals agree. Consider:

  • The European Federation of Neurological Societies and The International Headache Society, which said, “The first choice for the treatment of an acute attack should be the inhalation of 100% oxygen.”
  • The National Headache Foundation, which notes, “Oxygen inhalation is the customary treatment for cluster headaches.” 
  • The American Academy of Neurology, which explains, “For symptomatic treatment of cluster headache, the AAN recommends oxygen inhalation.” 
  • The Institute for Clinical Systems Improvement, which confirms that, “Oxygen inhalation is highly effective.” 

Patients with cluster headache need safe, rapid and reliable treatment options that work for their lifestyle and disease – treatment options like oxygen. While a very few patients may have the resources and opportunity to pay for it out of pocket, a large percentage depend upon Medicare for access. Until the Centers for Medicare and Medicaid Services revises its coverage policy, these patients will continue to suffer debilitating attacks, all the while knowing that a simple solution is just out of their reach.

Eileen Brewer is president of Clusterbusters, a nonprofit organization dedicated to research, education, support and advocacy related to cluster headache.

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