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To Diane Mann: Your experience with the original therapy (Interferon) is exactly why I will not seek out this new treatment they claim to be a "cure". The footnote listed under the term "cure" says it is defined as "Cure means the Hep C virus is not detected in the blood when measured three months after treatment is completed." That was a cut & paste directly from the Harvoni website. Many of us know it can come back later than 3 months & to me that is not a cure & certainly not worth the cost.
Actually, the guidelines recommend treating all stages: "Successful hepatitis C treatment results in sustained virologic response (SVR), which is tantamount to virologic cure, and as such, is expected to benefit nearly all chronically infected persons. Evidence clearly supports treatment in all HCV-infected persons, except those with limited life expectancy (less than 12 months) due to non–liver-related comorbid conditions." Although blood tests are good, the fibroscan is another way to get a sense of how your liver is doing. However, you can fight for the treatment even if denied. If your doc will treat you, then be patient through the process, and appeal the denials. http://www.mysupportpath.com/ is very helpful - so is https://www.viekira.com/ If your doc won't treat you, consider a new doc. BTW, had you not taken care of yourself, you might have cirrhosis today, and although the hep C treatments are good, you probably would still be stuck with cirrhosis. It was a good decision on your part.
I was treated with interferon 2002-2003, relapsing in 2004. At the time my fibrosis was rated 2-3 based on a biopsy. I have treated myself very well and become healthier. A blood test now shows my fibrosis to be at a 1-2. Consequently I do not qualify for Harvoni. It's so frustrating because, had I not taken care of myself, I would be qualified to receive the cure! I have a viral load of 16 million and have had the virus since 1976 after receiving a blood transfusion when I was 13 years old. It does not make sense that the insurance company would let me wait until I become less and less healthy (and more and more fatigued, fogged, etc.) to treat me. Do you know of any near changes that are anticipated in the guidelines? Thanks for your info. I find your blog super helpful.
I am glad to see them not recommending Interferon based treatment! My husband spent over 2 years on combo tx and the after sides have been awful for him! Brain issues, Sarcoidosis, fatigue, depression. The worst was the denial by the Drs. Initially and during treatment. Maximum dose sides totally ignored, I don't know how many times we were told it was of no clinical significance to them. I hope and pray that the new generation of treatments give qualify and are made available to all who suffer from HCV. May the stigma and assumptions change also.
Lucinda Porter
To SPenn - you wrote, "Many of us know it can come back later than 3 months & to me that is not a cure & certainly not worth the cost." Assuming you aren't referring to reinfection, there is no evidence for your claim that "Many of us know it can come back later than 3 months" - The data show otherwise.
April 27, 2016