@EBAB Dear Elizabeth,
I am sad to hear of the difficulties you and your daughter faced getting answers you can trust. I live in Virginia. I just want to reassure you that if she does decide to start treatment, please don’t rule out Vemlidy, TAF, due to cost. Gilead offers coupon you can request online which covers out of pocket cost up to $5000 per year. My $85 copays is reduced to $0 with the coupon. I have to get the med mailed to me from the specialty pharmacy that my insurance plan dictates.
I am planning to start the med this coming week. I have been in the gray zone for 6 years with fluctuating dna levels and ALTs in the 30s. Normal ultrasounds, AFP, fibroscans. It took me and my doctors awhile to decide to start. I do not want to wait any longer because I want to start before I have complications. But then, I am 48.
I think the Hep B foundation has a directory of hepatologists. I have seen probably 8 different ones because we moved a lot. I can’t say there is one that I absolutely love. But I am told they all use the same guidelines. I saw Zhiping Li at Hopkins and liked his bedside manners but am not sure he is reknown for hep b. He referred me to someone who he claims is reknown at VCU. This doctor reports he doesn’t see many hep b pts here and lacks bedside manners/ listening skills. He also insisted on fibroscans. I just saw a dr at uva for 1st time. He doesn’t think fibroscans are necessary since I dont have cirrhosis. I hope someone can refer you to a great hepatologist who has much experience with hep B.