On the PSC-Support Facebook page is the following concerning post:
“I’ve learned from the AASLD (the American Association for the Study of Liver Diseases) that they’ve approved (but not yet published) Guidance for PSC that will recommend oral vancomycin (OV) be limited to patients enrolled in a clinical trial. We have asked the AASLD multiple times to explain why they are restricting the use of OV. They have not responded.”
The post goes on to indicate that this guidance could be used by insurers to deny insurance coverage for Vanco for treatment of PSC. Our son was diagnosed at 5 years old (more than two years ago) with PSC-IBD. His numbers were awful and he was in bad shape. Since going on oral vanco (just over two years ago), he is thriving and his numbers are all normal. I used to post regular updates of his numbers and status. But in short, he has done great due to the ANI brand vanco and a wonderful doctor that we were referred to by Dr. Cox and Cactus Girl.
We are writing letters to this organization expressing our concern. But my question is whether this guidance would have any impact to those who already have doctors who are on board with Vanco? In other words, we already had insurance deny vanco initially because it is not FDA approved. We fought and won that battle. Can someone with more knowledge of this situation weigh in? Are insurers, after agreeing to cover Vanco because of our doctor recommendation now more likely to go against him because of this?
Couple of other points. The current AASLD that I could locate is at the link below. It is older from 2010 and it is pretty much useless. It essentially provides no recommendations other than liver transplant. It also recommends against ursodiol. While I have mixed feelings on ursodiol, our doc continues to prescribe it (and insurance covers it) which makes me think (hope) that our insurance or doctor decisions would not be impacted by any future change to this AASLD “guidance.”
sure glad you reposted this to this site. This site doesn’t seem to be getting a lot of traffic lately, although I personally check in frequently. The structure of this site seems to serve as a better archive for issues of common interest that can be added and revisited. And for this petition and letters may be reaching a separate PSC audience. As a vanco success PSCer I signed the petition and send my story as requested. The more influx of such, the less a large group of Doctors who have oathed to do no harm - will be inclined to go ahead and do just that.
Very interesting. It’ll be three months at the end of July that I’ve been on oral vanco—my doctor is on board with me replicating the clinical trials and my insurance covers it for $5/bottle(Cigna)
I’ve got my 90 day labs/fibro/ultrasound early next month and I’ll keep you all updated!
I haven’t noticed a difference in how I’ve felt, but to be fair I feel really good most days(aside from itching)
Love this group and all of the information, knowledge and support!
Yes they can and have done so. I am aware of one patient who has been taking OV for 20 years and had his insurance just denied. This was likely because of the 2020 Deneau paper (a flawed retrospective matched study that found no benefit to either urso or OV during a 1 year period, ignoring IBD effects). Deneau was also on the AASLD Guidance committee. The proposed Guidance will “reinforce” the Deneau paper for insurers.
the Stanford protocol is 50mg/kg weight up to 1500mg/day to start. If you have capsules, open them prior to ingesting. Some patients do not respond to certain brands of capsules. others have to open any capsule prior to ingesting. Increases bioavailability.