There are numerous barriers preventing cluster headache patients from getting a timely and correct diagnosis, let alone accessing the most effective treatment—high-flow oxygen therapy. Despite research dating back to 1952 that shows the efficacy of 100% oxygen in aborting acute attacks, the Centers for Medicaid and Medicare Services (CMS) continue to deny coverage for cluster patients prescribed oxygen¹.
Headache advocates, patients, and medical professionals continue to fight this decision, which is used as a guide for private insurance companies. Patients are left to pay out of pocket for high-flow oxygen, which can range from less than $1,000 a year for episodic cluster headaches to more than $5,000 a year for those who have the chronic form². Paying those amounts is not feasible for most people with the condition, especially when you consider the loss of wages from missed work or not working at all due to attacks. While some private commercial healthcare insurance providers reimburse the cost of oxygen, many patients seek other means such as purchasing welding oxygen tanks. (A welding oxygen tank is used in certain types of welding techniques. Unlike medical oxygen tanks, welding tanks do not satisfy FDA requirements for medical use.9)
“[I’m] on [the] Medicare advantage plan, and my insurance won’t cover it [oxygen],” said cluster patient, Wendy Corbridge. “Unless you’re having oxygen level issues, they won’t cover it. My neurologist told me to go get a welding oxygen tank.”
CMS representatives believe cluster headache patients should seek help at the ER to abort attacks, which they told members of Clusterbusters, a nonprofit devoted to cluster headache patients. There are multiple problems with that option:
- Cluster headaches last 15 minutes to 3 hours and re-occur up to 8 times a day. One cannot go to the ER multiple times a day.
- The ER is not equipped or trained to provide care for cluster headache patients, meaning you will likely be denied high-flow 100% oxygen and given a low flow rate with a nasal cannula instead of a nonrebreather mask.
- The long wait times in ERs mean the attack will subside by the time a patient receives care.
- It is not practical to seek care in the emergency department for an ongoing condition for which you have a valid prescription for oxygen therapy.
In February 2020, CMS was urged to reconsider the 2011 ruling to deny oxygen therapy coverage for cluster headaches. Unfortunately, they did not reverse that ruling, stating that “the evidence does not demonstrate that the home use of oxygen to treat cluster headache (CH) improves health outcomes in Medicare beneficiaries with CH3.”
High-flow oxygen has been the first-line agent for acute cluster headache attacks since the early 1950s. The therapy is not only recommended as Level A treatment by the American Headache Society5, International Headache Society, National Institutes of Health, and American Academy of Neurology but is listed as a treatment by Cigna® insurance and prescribed by headache specialists and neurologists around the world. CMS should be following the recommendations of the foremost experts in Headache Medicine¹.
Cigna® states on their Medicines for Cluster Headaches web page that “oxygen therapy is one of the best treatments to stop a cluster headache. Oxygen therapy relieves headache pain within 15 minutes in more than 7 out of 10 people.” The provider lists oxygen before all abortive and preventive medicines6.
The February 2020 decision by CMS again requests more clinical data before covering the cost of oxygen for Medicare populations. This creates a nearly impossible situation because the cluster headache patient pool is smaller than most primary headache disorders, making it difficult to enroll patients for a large clinical trial, let alone finding enough people who are 65 or older7. Additionally, funding for such an unnecessary clinical trial may be difficult to obtain. What funder wants to support research for a treatment widely understood to be effective and prescribed regularly?
CMS further limits access to care for Medicaid and Medicare patients with cluster headaches by limiting sumatriptan (the second-line treatment) to “no more than 10 treatments per month.” However, cluster headaches happen several times a day, which can leave patients without pain relief pretty early in the month. Additionally, many Medicare-eligible patients can’t take sumatriptan anyway because of an increased risk of cardiovascular ischemia or stroke¹. What’s more, the inability to access home oxygen therapy led to more opioid prescriptions for cluster patients, despite the fact that these addictive drugs are not indicated nor effective in treating the condition8.
Even after receiving a diagnosis (which is often delayed or missed), many cluster headache patients face unnecessary pain because they lack affordable access to high-flow oxygen. For a disease considered to be one of the most painful conditions a human being can experience this ongoing battle for simple oxygen is unethical and life-threatening.
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- Shapiro, R. E., MD, PhD. (n.d.). Alliance for Headache Disorders Advocacy [Letter written February 16, 2018 to Chairman Hatch and Ranking Member Wyden]. Retrieved July 16, 2020, from https://www.finance.senate.gov/imo/media/doc/Alliance%20for%20Headache%20Disorders%20Advocacy.pdf
- O’brien, M., Ford, J. H., Aurora, S. K., Govindan, S., Tepper, D. E., & Tepper, S. J. (2017). Economics of Inhaled Oxygen Use as an Acute Therapy for Cluster Headache in the United States of America [Abstract]. Headache: The Journal of Head and Face Pain, 57(9), 1416-1427. doi:10.1111/head.13167.
- Decision Memorandum for Home Use of Oxygen to Treat Cluster Headache (Rep.). (2011, January 4). Retrieved July 16, 2020, from Centers for Medicaid and Medicare Services website: https://www.cms.gov/medicare-coverage-database/details/nca-decision-memo.aspx?NCAId=244&ver=5&NcaName=Home+Use+of+Oxygen+to+Treat+Cluster+Headache+
- Horton, B. T. (1952). Histaminic cephalgia. Lancet, Feb(72), 2nd ser., 92-98. doi:https://pubmed.ncbi.nlm.nih.gov/14908316/
- Robbins, M. S., Starling, A. J., Pringsheim, T. M., Becker, W. J., & Schwedt, T. J. (2016). Treatment of Cluster Headache: The American Headache Society Evidence-Based Guidelines. Headache: The Journal of Head and Face Pain, 56(7), 1093-1106. doi:10.1111/head.12866
- Healthwise Staff. (2019, November 19). Medicines for Cluster Headaches. Retrieved July 16, 2020, from https://www.cigna.com/individuals-families/health-wellness/hw/medical-topics/medicines-for-cluster-headaches-abk7653
- Brewer, E. (2020, July 14). RELIEF OUT OF REACH FOR PATIENTS WITH CLUSTER HEADACHE [Web log post]. Retrieved July 16, 2020, from https://instituteforpatientaccess.org/relief-out-of-reach-for-patients-with-cluster-headache/
- Choong, C. K., Ford, J. H., Nyhuis, A. W., Joshi, S. G., Robinson, R. L., Aurora, S. K., & Martinez, J. M. (2017). Clinical Characteristics and Treatment Patterns Among Patients Diagnosed With Cluster Headache in U.S. Healthcare Claims Data [Abstract]. Headache: The Journal of Head and Face Pain, 57(9), 1359-1374. doi:10.1111/head.13127
- Ridl, Scott. “What Is Medical Grade Oxygen and Why Is a Prescription Required?” Oxygen Concentrator Store Blog, 28 July 2020, www.oxygenconcentratorstore.com/blog/what-is-medical-grade-oxygen-and-why-do-i-need-an-rx/#:~:text=Welding%20oxygen%20is%20used%20in,during%20one%20type%20of%20welding.
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