Great hepatologist not so great treatment

[NYLassie]

I see my hepatologist every 6 months because I am participating in the Intercept clinical trial. However, he doesn't really treat my illness. If I bring up anything, he tells me to contact my PCP. Even when I call to ask for say, a recommendation for safe OTC medications. My hepatologist is very knowledgeable, and personable, but nope, I am only there for the trial. Any other issues, I'd have to make an appointment. It's kind of disheartening. I am forfunate in that my PCP is very knowledgeable and encouraging, so that is something

[nash2 Partner]

Gee that is unfortunate. Some docs are about patient care and others about maximizing income. Apparently that one wants you to hire him separately to do anything but report to Intercept. If you have cirrhosis you probably do need to be in the real care of a liver specialist. Very few PCP's are qualified to support a liver disease patient. If I really thought the guy was a great doc I might do that even if I didn't appreciate his approach to pushing billing. Not easy.

[kensimmons in reply to nash2]

I generally agree with what nash2 wrote but will only say that we don't know what constraints the research company put him under. Perhaps the company thinks monitoring patients instead of treating them at the same time or in the same visit(s) is the only way to conduct an unbiased survey that will safisfy regulators?

If you are the doc and you treat them then maybe all sorts of things might be suggested by you that don't jibe with the trial - and this could put the doc in a bind - does he jeopardize the trial which might benefit a lot of people with a new medicine?....or does he do what he thinks is best for this one patient? Perhaps that might even include suggesting they get off the trial!

To avoid this conflict of interest the Doc seems to be putting up a "Chinese Wall".

idioms.thefreedictionary.co...

I am only theorizing here, giving a possibility that is a bit less bleak. Obviously I do not know what the doctors motivation is. I will say that it seems just from reading this board that most Heps aren't lacking patients, if anything the opposite is true (not enough liver doctors out there for all the ill people), which would kinda make me doubt he would resort to that because he wants/needs more patients. But again, who knows?!

[nash2 Partner in reply to kensimmons]

Good point, but it would be fair for the doc to spend 3 minutes and explain that

[kensimmons in reply to nash2]

You're definitely right about that 👍

[Confusedliver]

Not sure if this is helpful, but I'll share my experience. My first interaction with a true hepatologist was during clinical trials. I thought it would be a great opportunity to receive care and get the myriad of questions I had answered while at the same time helping the cause. I found the Dr. standoffish and curt, I even commented to the assistant (very nice man) about his bedside manner. After the trial I made an appointment to his liver clinic for monitoring, with some reservation because his behavior. But like kensimmons said, there aren't a lot of them out there. My experience at his clinic was night and day different. He spent an hour sitting down with me and answering every question the best he could and offering suggestions. I was pleasantly surprised, he was caring and responsive, almost human (lol). I couldn't say why, maybe it depends on the day with my Dr.? I guess I'll find out at the next appointment.

[NYLassie in reply to Confusedliver]

I had the opposite experience. When I first saw my hepatologist, he was brusque, condescending, and dismissive. Once I started the clinical trial, he was very nice and personable. He still is. He's always pleasant and chatty when I come in for my 6 month check ups.

[CTink]

What does OTC and PCP stand for