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I was first diagnosed with IH in 2011. I've found no relief from long sleep and excessive daytime sleepiness in 15 years. My original sleep medicine retired shortly after my diagnosis. My health insurer referred me to a pulmonologist who seemed adverse to treating sleep disorders. After fighting to see a sleep specialist, for the past year I've been jumping through and the medication hoops required by my insurer. When I finally got an order for Sodium Oxybate, my insurer only has Lumryz on their formulary. Lumryz does not view IH as a qualifying diagnoses for Sodium Oxybate. Only narcolepsy qualifies, so they offer no support for IH patients. Hence, the copayment is over $2,000 per month. They would only allow Xywav as a formulary exception if I had previously used Sodium Oxybate or Lumryz. And won't allow Lumryz without a narcolepsy with cataplexy diagnoses. I feel like I'm in a 'Catch 22' situation. Any advice? Meanwhile, I sleep 15 to 17 hours per day. I don't have much life to have any quality in.
Gary MosierHi Gary. Welcome to the community! What a maddening situation. Have you gotten your doctor involved in the fight with the insurance company? Often, medical practices are willing to work with insurers in situations like this. There is also a generic form of sodium oxybate made by Hikma. Hikma offers a co-pay savings program, sometimes reducing costs to as little as $30 per month if you are eligible. Here is a link: https://sodiumoxybateoralsolution.com/. I hope this helps. You need and deserve relief. Keep us posted, if you don't mind. I'll be thinking of you. - Lori (Team Member)
