Our 5-year old was diagnosed a week ago with PSC-IBD, likely some type of overlap syndrome. He started right away on steriods and Ursodiol (we hope to cut back on steriods soon). Through reaching out to physicians across the country, including Dr. Cox and Mayo (and others here who have helped), we obtained an appointment with a liver specialist somewhat nearby (4 hrs away) that has used vanco on his PSC patients. We had a remote video appointment with him this week and got a prescription for vanco. He said when he goes to liver meetings, he is in the minority of physicians who use it. He said they are told there is no evidence it works. His response is that he has seen it work with his own eyes over 8 years, particularly in children and those with IBD. He said if it was his son, he would put him on it right away. So we did.
This physician has not focused on particular brands (like ANI). He had not heard of ANI when I brought it up.
We got the prescription; however, it was denied for coverage by our insurer. We went in a made dash looking at various pharmacies (looks like CostCo was cheapest option locally, but they had no supply). We settled on a 2-day prescription (oral vanco, non-name brand) from Walgreens for $204, then will get a month from Wal-Mart beginning next week for about $450. 1000 mg/day, which the doctor said is based on Dr. Cox’s recommendations. Questions:
for those who have obtained approval from insurance, what did you do? Did it require an appeal? Our physician provided the insurer with research, but they denied so quickly, the insurer probably did not review. Any advice?
Even if we do not get insurance, we will pay ourselves, but I want to make it as economical as possible without compromising results. Any advice? My son, surprisingly, had done well today with the pills (first day on it). So we are fine with that. I heard that FIRVANQ (liquid solution from Cutis Pharma) was cheaper, but I am not finding that to be the case. As far as ANI, that is out of reach regarding cost. It would be $20K a month (based on searches of non-generic vanco on goodrx, which I assume is the ANI)
Any other advice in this situation re lowering cost, effective brands?
@STLBluejay Sorry to hear that insurance denied Vanco for your son. IIRC, we had a somewhat similar experience but our doctor Dr.Yinka Davies took care of talking to insurance and got it approved finally. When we talked to her more than a year ago, she mentioned that not even one patient was denied Vanco coverage by insurance as she provides extensive documentation of its effectiveness and how liable they (insurance) are if liver failure were to occur in near future and the cost insurance has to absorb for liver transplant.
Sometimes, it may require a pre-authorization and this can take additional time (weeks) from insurance. Additionally for us, even though insurance covered vanco they bargained on the price with pharmacies and alot of pharmacies declined selling for the price insurance approved. IIRC, it took us several weeks to finally find one pharmacy closer to home.
If our insurance didn’t cover then most likely we would have used firvanq instead of ANI. A lot of folks here had good success with firvanq as well.
I would just follow-up with your doctor and they may already have initiated the pre-authorization. Good luck!
Regarding generic pills: The issue of therapeutic equivalence potentially involves the different rates of dissolution between different gel caps. If numbers don’t normalize on a generic, an option to consider is to pop the larger end of the gel cap off before swallowing (and to take with food to slow things down in the stomach).
If you are stuck paying: IV vanco compounded for oral use (usually a liquid) is usually cheaper than the Firvanq kits. Google your area and “compounding pharmacy” then give them a call to see if they can make this compound and for how much. Years ago I did this with 1000mg/day and the cost varied between $200-400 USD.
JTB is totally correct! I’d just add that current prices for the oral solution is about $400 per month for 1000mg/day with GoodRx (for both Firvanq and ANI brand).
I’d also add that it’s not a super big hassle taking oral vanco. I’d recommend buying a micropipette and putting individual doses in test tubes, making it very easy to take the doses on-the-go.
Important to know, if you haven’t seen this already on these discussions on this site - there is a trick for coverage that is applicable for some areas/countries. The insurers have a ‘Formulary’ which you can find by digging on there websites generally and this ‘Formulary’ is a the official list of what drugs and forms they cover. In my case, my insurers don’t cover oral vanco, but they do cover certain types/sizes/brands of IV powder vanco. My guess is because IV administration is certain to be short term use for all of its approved (on label) applications so therefore is a small (at least short term) expense for them (and they have yet to consider PSC use). That benefits me cause the IV and oral are the same stuff (the leaflet in the box even talks about oral use of the IV powder for CDiff purposes). I just found the covered version, and got my Dr to prescribe it specifically. RJM
My daughters oral vancomycin (liquid) costs about $2000CAD/month, and it was rejected by my insurance company but approved by my wife’s. As another member mentioned, we had our daughters Pediatric GI provide some documentation on it to the insurance company. I believe capsule form is a lot cheaper here.
