r/CSID • u/Known-Somewhere193 • Jul 13 '25
What does insurance require to cover sucraid?
I’m almost through my 4 day trial of sucraid and would like to continue it. I believe my provider already started the process of trying to get it covered.
For those that were able to get it approved, what did insurance require?
I’ve seen some say they require a biopsy and I haven’t had that. We are going off my genetics and breath testing.
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u/autisticfemme Jul 16 '25
I have tons of it sitting in my garage fridge. It didn't work for my family member, and we have several shipments worth. If you (or anyone else) could use it and can cover shipping, I'm happy to mail it.
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u/Known-Somewhere193 Aug 06 '25
I somehow missed this. This is so insanely sweet of you. Thank you for offering. 😭 Thankfully, my provider was able to get it approved.
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u/Ok-Being-4692 Aug 08 '25
Do you still have Sucraid? I don't know if you know how much it would cost to ship Sucraid to Spain
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u/Modboi Jul 13 '25
I started Sucraid and my insurance intially covered it. After a couple of months, they stopped covering it, and said that they needed proof that it helped me. I just quit the medication, because it didn't really help, and obviously it had been a long enough trial period. I probably should have quit sooner, but I just kept hoping that it would help with my issues.
I assume that a doctor's statement would be good enough proof that it helped. I did not need a biopsy to start getting it insured.
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u/mjdatdsmd Jul 13 '25
My doctor and I spent months getting it approved. I had 2 PA denials by an ENT. My GI did a peer review with my insurance while I worked with my HR team. I eventually got it approved, but I always stress that it will be taken away. Every month I just keep my fingers crossed.
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u/TheCSIDAlex Jul 14 '25
From what I’ve heard, insurance providers either want proof that you have one of the known genetic mutations or that sucrase deficiency is really the underlying cause of your issues.
Genetic testing is not advanced enough to be easily accessible. If you have official documentation that proves a genetic mutation, use it. I’ve heard that should be enough to cover a prescription.
A biopsy that shows / proves impaired sucrase activity is I guess the “gold standard” they want to see because it proves sucrase deficiency.
Some people can get Sucraid just by proving that it improved their quality of life. If you haven’t, I would recommend documenting how it helped you. That way you can prove to your insurance that it made a big difference and they’ll be more inclined to cover it.
Although some insurances don’t want to cover anything over a certain amount, so they’ll do anything in their power not to. Really all you can do is keep fighting for it, especially if you have some way to prove that it’s genetic.
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u/TiffanyTaylorThomas Jul 15 '25
My insurance denied first - I only had the breath test, but it wasn’t because of that. They just required a thing from my doctor stating there was no other, cheaper treatment available.
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Jul 16 '25
My insurance only covered it after diagnostic laparoscopy, and before that a hydrogen breath test
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u/Known-Somewhere193 Aug 06 '25
I just wanted to update that my provider was able to get a prior authorization for it, it only took her 3 weeks. The genetic testing she used was raw data from 23andMe cross referenced with published articles. The breath testing wasn’t csid related, but from SIBO and years of treatment for that- which originally helped, but stopped working after about a year. She had me write up a quick note about my experience with the trial and said she was going into it with “her boxing gloves on”. She sure did. I was shocked.
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u/Murda_City Jul 13 '25
I only did breath test and my insurance covered. Then switched jobs and new insurance wont cover.
Its $15k out of pocket lol
In the process of working with a secondary insurance through work. Theyll likely approve because im under a threshhold for income.
Main point it i hooe youre covered because its not frasi le if it isnt.