26/M, income ~$36k gross, 98052
Bear with me because I’m basically in panic mode right now, and I have a doctor’s appointment on Monday to try and sort this out. But I need advice asap if anyone has any that can help. I’ll try to keep it in bullet point format to its easier to understand. I have tried seeking advice from pages that are dedicated for people with my condition, but no one has any specific answers so far.
•Have a condition called Idiopathic Hypersomnia (IH); it is a condition similar to narcolepsy, but with key differences. People with my condition can sleep for 12+ hours daily and not be refreshed ever from sleep.
•Most difficult synptom to treat is called Sleep Inertia, which is the inability to transition from sleep to wakefulness without extreme difficulty, disorientation, and potential safety issues. It’s equated to waking up from general anesthesia every day. Mine is categorized as very severe.
•IH currently has NO FDA-approved medications to treat it. The only medications that help with the symptoms are only FDA-approved for the treatment for narcolepsy, sleep apnea, and/or ADHD.
•One drug that has helped me for the past year is called Xywav (formerly Xyrem), which is a medication taken at night for narcolepsy that improves daytime sleepiness. It is EXTREMELY expensive ($16k per month cash price). The company only allows no-cost medication for those who are still waiting for insurance approval, with a max bridge period of 120 days.
• It not only helps me with daytime sleepiness, but my sleep inertia has now gone from very severe to mild. It has been LIFECHANGING and I can actually function normally, and thrive. I wouldn’t have gotten my new job without it, because it requires a LOT of attention to detail and concentration (I work with medical records, and training to be a medical coder).
•My doctor got it covered under my old insurance by simply checking off a box that I had narcolepsy, and insurance didn’t really look into it, other than to ask what other drugs I had tried for symptom management (which was a LOT – even SUPER weird off label uses).
•Got a new job with new insurance. New insurance demanded my sleep study results, clinical notes, etc., and have denied it saying that I don’t meet the diagnostic requirements for the drug (aka my sleep study says I have IH, and not narcolepsy).
•Xywav is currently under FDA Fast Track review as the first drug to be potentially approved for IH. It is now in stage 3 where it is pretty close to approved, and expected to have that approval by the end of the year.
•I CANNOT function without this drug. At all. Whatsoever. I am at a danger to myself and others without it due to unrelenting drowsiness, and my quality of life was h o r r e n d o u s before I started it.
Is there ANYTHING I can do in order to have a better chance of a successful appeal for an “experimental” drug, because no drug currently exists for my condition? I am in desperate need of help. Thank you to those who read my entire case.
submitted by /u/DumpsterPuff
[link] [comments]
26/M, income ~$36k gross, 98052 Bear with me because I’m basically in panic mode right now, and I have a doctor’s appointment on Monday to try and sort this out. But I need advice asap if anyone has any that can help. I’ll try to keep it in bullet point format to its easier to understand. I have tried seeking advice from pages that are dedicated for people with my condition, but no one has any specific answers so far. •Have a condition called Idiopathic Hypersomnia (IH); it is a condition similar to narcolepsy, but with key differences. People with my condition can sleep for 12+ hours daily and not be refreshed ever from sleep. •Most difficult synptom to treat is called Sleep Inertia, which is the inability to transition from sleep to wakefulness without extreme difficulty, disorientation, and potential safety issues. It’s equated to waking up from general anesthesia every day. Mine is categorized as very severe. •IH currently has NO FDA-approved medications to treat it. The only medications that help with the symptoms are only FDA-approved for the treatment for narcolepsy, sleep apnea, and/or ADHD. •One drug that has helped me for the past year is called Xywav (formerly Xyrem), which is a medication taken at night for narcolepsy that improves daytime sleepiness. It is EXTREMELY expensive ($16k per month cash price). The company only allows no-cost medication for those who are still waiting for insurance approval, with a max bridge period of 120 days. • It not only helps me with daytime sleepiness, but my sleep inertia has now gone from very severe to mild. It has been LIFECHANGING and I can actually function normally, and thrive. I wouldn’t have gotten my new job without it, because it requires a LOT of attention to detail and concentration (I work with medical records, and training to be a medical coder). •My doctor got it covered under my old insurance by simply checking off a box that I had narcolepsy, and insurance didn’t really look into it, other than to ask what other drugs I had tried for symptom management (which was a LOT – even SUPER weird off label uses). •Got a new job with new insurance. New insurance demanded my sleep study results, clinical notes, etc., and have denied it saying that I don’t meet the diagnostic requirements for the drug (aka my sleep study says I have IH, and not narcolepsy). •Xywav is currently under FDA Fast Track review as the first drug to be potentially approved for IH. It is now in stage 3 where it is pretty close to approved, and expected to have that approval by the end of the year. •I CANNOT function without this drug. At all. Whatsoever. I am at a danger to myself and others without it due to unrelenting drowsiness, and my quality of life was h o r r e n d o u s before I started it. Is there ANYTHING I can do in order to have a better chance of a successful appeal for an “experimental” drug, because no drug currently exists for my condition? I am in desperate need of help. Thank you to those who read my entire case.
submitted by /u/DumpsterPuff [link] [comments]Read Morer/HealthInsurance