I am reaching out to the community.
I heard a rumor that Mayo clinic decided to revisit vanco trials following anecdotal accounts.
I also heard that Mayo reached out to Ani for free samples for the trial, but Ani ultimately declined because it wasn’t profitable.
I recently shared info about affordable vanco. Although the information was met with gratitude, the worry was that it wasn’t vanco grade Ani. I share this worry.
This is important.
Please if you have info about this topic, share.
I share the same concerns
What is big pharma, if not to treat medical conditions?
Collectively, we are strong
Alone, oh so poor
Staggering the price we pay
Its seems odd I know, but pharma is a business competing for indescriminating investment dollars from investors, like any other business. If a pharma, because there business type ‘appears’ to be khumbyah altruistic (because medicine helps people) is asked/expected to take dividends away from shareholders and put in charity (like us - ‘orphan disease’ treatments), then they lose investment to the widget manufacturer next door who does not have that expectation. And the pharma company fails to thrive, compete, survive. Pharma would argue that if you take 10% of our profit for charity orpan drug distribution or development, then widget co. next door should kick in the same so we are equally penalized and shareholders stay. On Mark Cuban’s Vanco, its just a matter of time before some’s PSCr’s for whom cost is the barrier, try what they do have. If it works, that will be great. ANI is not the only one that works, just the current and availble and cost effective known entity. i think if someone could get 5 minutes to explain the PSC and Vanco issues to Cuban, he would do a deal with ANI just for the PR potential of showing how his -in your face, help people, low cost pharmacy - has actually provided inaccessible treatment to a whole ‘orphan disease’ population, otherwise being shafted - he would help. And finally, agree there is huge information and therefore power in this forum, when the orphans get together. When I got Vanco in 2014, my specialists had not even heard of the treatment, now they are innundated with demands from other patients and they are feeling the pressure (all from internet based info share). And everbody here needs to keep up that pressure - each PSCr should take a new hardcopy publication of PSC research with each Dr. visit, everytime. keep shaming them. It shouldn’t be long now.
Will your doctor prescribe this if asked?
I’ve read a bit about this in the forums here but haven’t broached them subject with my new GI/Liver doc.
I priced the med through my insurance and it’s only showing for $5/month, but from what you’re saying that seems too low. Am I looking at something incorrectly?
Since Vanco is not FDA approved to treat PSC, you may be getting a price based upon an approved use.
My hepatologist wrote an Rx for me and my insurance covered it in full. I take it four times a day. It has helped in a number of ways, one obvious is my GI tract is working much more smoothly now. Not as much upset stomach as I was having. I do take off the blue end of the capsule before swallowing. I am just on the generic version and my labs are coming down. I go tomorrow for more labs. I’m eager to see how things are going.