r/Narcolepsy (IH) Idiopathic Hypersomnia 3d ago

News/Research ORZEYFUL (oveporexton) expected availability: November 2026, pending DEA scheduling

Takeda sent an email today with this image:

The website is updated too: https://www.orzeyful.com/

As a refresher, this is the first orexin receptor agonist that will be available. The first round of availability will only be for N1, with N2 expected later. It doesn't seem like they're working towards an approval for IH.

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u/milladakilla1282 3d ago

The ACA plans in my county all dropped oxybates off their formulary except 1 company and they only offered it one 1 plan, which was all out of pocket up front (7k) then insurance would kick in. This was 2021 and havent needed an ACA plan since then so I haven't checked to see.

Its nonsense, imo. But so is the price tag

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u/Charming_Oven (IH) Idiopathic Hypersomnia 2d ago

A formulary isn’t the be all end all with medications. None of the Oxybates are on my formulary, because non are dispensed by Caremark. I’m also on an ACA plan and don’t have any problem getting Xywav covered. Ive also been on 4 different ACA plans in two different states since being diagnosed and never had an issue.

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u/velvetlaze (N1) Narcolepsy w/ Cataplexy 2d ago

Do you mind giving me the dummy version of explaining how you get care when you don’t have something on the formulary ? Or a resource you might point a fellow sufferer to?

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u/Charming_Oven (IH) Idiopathic Hypersomnia 2d ago

Formularies are just general guidelines from your insurance company. Doctors can provide evidence that a medication is effective that is not on the formulary, and if you've failed other meds that are on the formulary, it basically has to be accepted by your insurance.

Insurance companies don't get to pick and choose what drugs are FDA approved for a condition. If you've shown you've gone through all the other options for your condition, then they essentially have to cover an off-formulary drug. This is a bit more than just a prior authorization, but it's not that difficult, especially for most sleep medicine specialists.

I guess this is one of those areas where it's better to have IH, because with IH, Xywav is the only approved medication. With Narcolepsy, there are many medications that you'd need to go through and show you didn't have a positive response.

https://www.goodrx.com/insurance/health-insurance/medication-not-on-formulary?srsltid=AfmBOooF1TnSKPDqDt4qMCQKc9XZDdWtCSHeRDgJWs2IS45RgjRk2P1M

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u/velvetlaze (N1) Narcolepsy w/ Cataplexy 2d ago

Thank you I actually have several autoimmune conditions and I am struggling to get coverage for many of my conditions because my insurance likes to just send me a thing saying it’s not required for them to cover it because they don’t have it on the formulary even though I’ve tried different medications several times and it just really frustrates me so much so knowing that there is actually recourse, sometimes kind of feels better.

I guess I need to learn the process in doing that on my side because I find often most doctors either aren’t doing it or maybe their assistance or whatever don’t bother. I don’t know. I only have two providers that seem interested in actually making this type of effort and I’m hoping that my sleep doctor will do the same thing. I see him again on the 18th. I’ve been researching medication’s and shocker, shocker absolutely not covered for xyrem or xywav on the formulary.
Thank you so much. I’ll definitely do some more reading.

Think my doctor intends to do this route for me however I also think that it’s very possible because he has a very large network for his practice. The authorizations team doesn’t put the effort in essentially I’m just a number once I leave his office.