Turning a Negative Care Experience into an Advocacy Win
I recently wrote about how to treat cluster headaches during pregnancy and the pain relief I’ve achieved with high flow oxygen therapy. I'm now eight weeks into an episodic cluster headache cycle that started at the dawn of the second trimester. Cluster headache patients face many barriers when it comes to getting the correct diagnosis, let alone finding a proper treatment plan complete with abortive and preventive medications. What we often forget about is the "middle man" involved in getting those treatments. That could be your pharmacist, insurance provider, or in my case, the oxygen supply company.
Oxygen and cluster headaches
High flow oxygen is the most effective treatment for cluster headaches. It's also the one we must fight tooth and nail to get—from the prescription to the tanks and mask. Insurance companies rarely cover the cost of oxygen therapy for cluster headaches because of the ill-advised ruling by the Centers for Medicaid and Medicare Services (CMS) to deny oxygen coverage.1 That leaves patients paying hundreds, sometimes thousands, out of pocket to abort their attacks safely and effectively. Others rely on medications that may have severe side effects or turn to welding oxygen (which can quickly become dangerous).
An ongoing battle with insurance to get oxygen for cluster headaches
While we continue to fight the CMS decision with letters to our representatives and senators and at events such as Headache on the Hill, many patients, including myself, have resigned ourselves to pay out of pocket for the life-saving treatment that is high flow oxygen. Since this cluster headache cycle began in May, I've gone through more than $300 in oxygen.
Does pregnancy get insurance to cover high flow oxygen?
Two weeks ago, I decided to investigate whether my pregnancy would get my insurance provider to cover the cost of oxygen, seeing how it's my safest option to treat my head pain and keep my baby growing healthy and happy. What ensued was a nightmare. Literally, I have had nightmares about this happening and countless panic attacks because this isn't the first time an oxygen company has refused to fill my prescription.
I needed a new diagnosis of cluster headache?
I was told that I needed a prescription with my "new diagnosis" to bill insurance. Confused, I made sure the woman on the other end of the line understood that cluster headache is a lifelong neurological condition and that I did not need to be diagnosed again. With around 6-7 daily attacks, I decided against the back and forth it would require with my headache specialist in Denver to get a new prescription and again resigned to pay the $122 each time I needed new tanks. Exhausted, I left the fight for another day.
Oxygen suppliers try to give oxygen concentrators instead
The next week, I asked my husband to call the company for me to schedule a delivery to exchange my almost empty tanks for new ones. You see, he understands the grief and anxiety I've gone through with other oxygen suppliers because despite what's written on the prescription, they don't want to give you high-flow oxygen. They want to provide you with a nasal cannula and an oxygen concentrator or a regulator that maxes out at 5 liters per minute (lpm), even though you need up to 15lpm and a nonrebreather mask. Oxygen suppliers regularly refuse to give cluster headache patients the oxygen set up their doctor ordered for them, requiring multiple phone calls to confirm that is indeed what the patient needs to abort an attack.
Denied oxygen for cluster headache without notice
My husband was told they would not deliver me new tanks because my prescription was expired - something I was never told and none of the headache advocates I'm close with have experienced. (Apparently, you must renew your prescription for oxygen every 12 months.) My prescription had expired in the summer of 2019, and the oxygen company had been delivering my oxygen tanks without issue since then. It was quite evident that my request to bill my insurance provider had revealed their mistake — which they openly admitted was their fault but refused to provide me with even one tank to tide me over until I could speak with my headache specialist.
Here I was with just a few hours left of oxygen, in the 21st week of pregnancy, being denied the only treatment for my brain disorder during a pandemic.
Rationing my remaining oxygen
We asked for the manager, but he was on vacation. My husband and I both talked to several people who offered zero help. I sobbed. I struggled to breathe, and I started to ration the few hours of oxygen I had left. There is nothing worse than having to choose which attacks are severe enough to treat because having nothing to treat the pain is what makes you remember why these attacks are nicknamed suicide headaches.
My support system is incredible
My husband scrambled to get ahold of another oxygen supplier in our area. At the same time, I reached out to my OBGYN about renewing my prescription before my last tank of oxygen ran dry. Luckily, my OB and midwife team are incredible, and they faxed over a new script to a different company several hours later. Thanks to my amazing husband and connections in the headache community, we were able to get things sorted out in the interim. As I found my breath, the tears stopped flowing, and my heart rate found a familiar rhythm, I realized I was probably not the first patient they left high and dry because of an expired prescription.
Oxygen supply companies give no warning of expired prescriptions
The pharmacy lets you know when you're on your last refill, and they often fax a request to your prescribing physician, giving you a 30-day window to renew the script. However, oxygen supply companies do not follow that protocol—not yet anyway. I decided I, as a headache advocate, couldn't let this slide. I would not add this incident to the dozens in my past where an oxygen supplier failed me.
Advocacy after the oxygen incident
I wrote a letter to the President of Airway Oxygen, the company in question, as well as the manager at my local branch and the staff at the main office. With my letter, I included a copy of my book, Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man, a copy of the 2017 article written by Dr. Stewart Tepper about prescribing oxygen for cluster headaches, and a copy of the study on the burden of cluster headaches by Dr. Larry Schor.2,3,4 I urged them to provide at least 30 minutes of training on cluster headaches to all staff and to change their practices to notify patients that their prescriptions were expiring, so they were given a window in which to ensure it was renewed.
Turning a negative into a positive
I didn't expect much. At most, an apology and that the recipients would begrudgingly read the first page of my book or one of the studies. The response of the President of Airway Oxygen was outstanding. He called my local branch immediately and instructed them to see to my oxygen delivery needs that day. He then called and emailed me. We connected the following Monday and spoke for around 20 minutes about how their policy is not to withhold oxygen without notice. The local staff should have contacted my prescribing physician. He not only apologized for their behavior, but we discussed advocacy at length. We discussed how it's crucial for them to understand cluster headache patients' needs because we require a regulator with a high flow rate, multiple tanks, and a nonrebreather mask to treat the acute attacks.
My conversation with the president of the oxygen supply company
He is now working with the compliance and sales teams to come up with a way to ensure patients with cluster headaches who get oxygen through the company will not only be treated with respect but in a timely manner and according to their prescription. There is a mask made specifically for cluster headaches, and he is looking into stocking that for patients as well. When the pandemic comes to an end, we hope to schedule a presentation where I can talk about cluster headaches and the ins and outs of high-flow oxygen as a treatment.
Why we, as migraine advocates, keep going
We all have had negative experiences when it comes to our medical care, be it from a primary care doctor, neurologist, pharmacy, or other outlets. This is not the first time I've had to argue with an oxygen company about cluster headaches and my needs as a patient, but it is the first time it's had a happy ending.
Being an advocate for your medical condition can be challenging, especially when it's an invisible illness like migraine disease or cluster headaches. You may feel small. You may feel alone. But the actions you take when you're denied care or coverage could make a huge difference for the next patient. I wish I didn't have to go through the anxiety and fear of running out of oxygen, but I'm thankful my negative experience led to an advocacy win.
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