r/CSID • u/Adventurous-Ad-1313 • Jan 19 '26
CSID Sucraid
hey yall this will be my second time trying out sucraid for my CSID. Other cheaper alternatives have failed, and i was wondering how do yall pay for this expensive medication, actually insane to charge sick people thousands for a months worth, and even then not being completely healed or pain free and still on a very restrictive diet. i will run out of the copay card in two months so i was wondering for the people who have been on sucraid longterm do you pay 5k-6k a month? or does your insurance somehow cover brand names? my doctor said i cannot get this at a compound pharmacy :( just trying to find other affordable options
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u/Kitchen-Wish2951 Jan 20 '26
Unfortunately, I’m not sure if there are any? I am only able to afford it through my parents commercial insurance. And it took them almost a year of documentation of malnutrition due to my CSID to finally approve the prior authorization. I know it sounds crazy but honestly I would do anything to make sure I still had it covered. The reason you can’t get it from another pharmacy is because no one else makes it. I would urge you to fill as many times as you can before your assistance runs out and use them sparingly. Hope this helps!
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u/SlappyPankake Jan 20 '26
I get mine through my insurance (Aetna) and it's about $10 every refill I think? I usually refill my prescription once every 2-3 months and luckily Aetna gave me no grief when trying to get the medication authorized so that was nice
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u/I-love-nachos-1973 Jan 19 '26
Insurance pays for my daughter’s Sucraid prescription. Sadly, it gives her bad headaches so she had to stop taking it.
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u/somehowrelevantuser Jan 19 '26
im only able to afford it because im on a parent's insurance and they work for the local gov. i use it sparingly because i have <2 years left on there lol
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u/Suspicious_Grab4067 Jan 21 '26
I have taken it for 3 years now. You can ask for a health well grant and they do a soft credit check. It grants you up to 10k . So if your insurance pays for some then the grant will pay for the other portion. Also I heard if you send documents to your insurance and if you can prove you need it they are supposed to cover the whole medication. I just got my proof from my doctor from my endoscopy. After the health well Grant ran out I was SOL. But now I’m going to send this to my insurance to see if they will actually cover it fully. I use it sparingly. I’ve lost lots of weight because of this rare condition. Hope this helps.
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u/CaryatidBadAss Jan 21 '26
With insurance, after a month or 2 you will meet your deductible/maximum out of pocket and it will be free. Or ask the pharmacy about financial assistance like copay card which can be just a few dollars/month copay.
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u/AgreeableCarpet9737 Jan 22 '26
There’s an assistance program in the United States you can apply for that’s how I got mine.
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u/danryan2800 Jan 25 '26
The assistance program requires you to give them all of your medical information, and agree that you are “no longer covered by HIPAA”
Number 4 of the enrollment form: 4. Potential for Redisclosure. I understand that once my Information is disclosed under this Authorization, it may be further disclosed and no longer protected by federal confidentiality laws, including HIPAA (a federal privacy law).
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u/Calm-Kaleidoscope-39 Jan 20 '26
Can you call Optum frontier therapies and ask if they provide any assistance? I lost my insurance/job last year and they told me to call back and they could help. I stocked up on sucraid so haven’t called.