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You are so right! Thank you for sharing that. The other thing that helps is working with patient assistance programs. Hep has a list: http://www.hepmag.com/articles/2512_20506.shtml
I was diagnosed with Hep C in 1997 and it's speculated that it was acquired from a blood transfusion in 1983. At the time of my diagnosis, I was working in healthcare and used my connections within the system to obtain a liver biopsy, etc. I also had several different pathologists read my biopsy slides to determine whether or not I needed treatment. When I learned about a nearby conference on Hep C, I attended and obtained the name of a leading Hep C Center and doctor in San Francisco. Luckily, I had insurance through the hospital where I worked. After two treatment relapses, I basically just waited until Harvoni came out and then went to the same Liver Clinic where I had once been on the liver transplant list. (The second course of ribavirin and interferon gave my liver a rest and I was taken off the transplant list) I have worked as a Patient Advocate for many years and understand the ins and outs of healthcare delivery in this country. The most important thing that a Hep C patient who is trying to get approval for Harvoni needs to know is that one must go to an institution who is experienced in obtaining authorization for this drug. I was approved in less than a week. Granted, I was F4 on the Fibrosure scale, but I know that my clinic has excellent connections and knows what the insurance companies want to hear in order for them to approve the drug. Even if someone has to travel to a center that specializes in liver transplants, etc., it's really important that they do this. I have only seen my doctor two times since I started treatment 5 months ago and I cleared the virus within ten days after started. I wish I could do more for those who are seeking care for this virus. I have an advocacy business but usually do a lot of volunteer work. I'll be finished with Harvoni on September 5!
Lucinda, I received word today that Medi-Cal changed their guidelines and now will approve treatment for those with stage 2 Fibrosis. I am elated. This is huge for folks like me in California. I should start July 13, through Diplomat Pharmacy. Yahoo. Mary
Mary, Medi-Cal is reviewing their guidelines, and they appear to be poised to open them up to many, many more people. Keep trying! (But if you are a Warrior, I don't have to say that, I bet)
Lucinda, Thank you for this informative article and the link to the story about Beverly Gray. I was diagnosed with Hep C (genotype 2) about a year and a half ago. Still no word about treatment approval. Very disappointed with Medi-Cal and Stanford Medical Center. What really caught my eye is Beverly had a rash as a symptom. I've had a rash that continues to expand on my torso for almost 6 months,and both my primary care physician and my hepatologist do not think it is related to HCV. Looks like I'm not the only one. I'm a Hep C Warrior for Connie Welch and Life Beyond Hep C. Looks like it could be a long journey for me. Thank you again for this practical and useful article. Mary
Hi Lucinda, Excellent article and great info. Keep up the super job! Connie
I guess I was one of the "lucky" ones, because my Harvoni was approved so quickly I was shocked. I had it within weeks of my visit to my gastro. But am I lucky? I got it because my liver is in terrible shape, and it was treat or transplant. Maybe being turned down isn't such a horrible problem after all. My heart goes out to those who simply want to put this disease behind them, but oh, how I wish Harvoni had been available just a little sooner.....
MJN55
Finished 12 weeks on epclusa april 2023 geno 2b no liver damage detected before treatment. Liver enzymes. Have always been alt ast 13 -18 just had blood drawn from regular dr liver enzymes 31-62 in a matter of weeks??? Not a drinker and haven’t used in 38 years what’s going on
June 26, 2023