Thursday, October 15, 2009

Dear HCV Advocate

Dear HCV Advocate,

First, let me just say that I am so grateful your website exists. It is my number one trusted resource for information about Hepatitis C (HCV). In my humble opinion, The HCV Advocate offers unbiased, up-to-date and comprehensive information that simply can not be found any where else; I know because I have been searching for years for information on HCV and find myself constantly coming back to your website to get the answers to my questions.

Please keep up the good work as I now rely on you to keep me informed. I also very much appreciated the recent article directed at people like me who see the value in treating their HCV infection but are choosing to wait for more tolerable treatments. Due to late and long term effects from my leukemia cancer treatment in 1988, I am unfortunately unable to tolerate the standard HCV treatment of interferon and ribaviran.

As much as I appreciate what you do for people like me living with HCV, I want to make you aware of a problem I am having with the hepatologists I have approached and asked to help me manage my HCV medical care. I have brought the information I found on the HCV Advocate website with me when I have seen hepatologists at both UCLA and Cedars-Sinai. I am constantly amazed at the responses I get when I try to discuss what I have learned from the HCV Advocate with these doctors. For example:
  • I discuss my concerns about the emerging relationship between Hepatitis C, insulin resistance and type 2 diabetes.
  • I talk about my concerns having Hepatitis C and being diagnosed with fibromyalgia.
  • I express my concerns about the research that indicates that I may be at increased risk for developing liver cancer because I have type 2 diabetes, fatty liver and genotype 1b HCV.
  • I try to discuss a journal article about leukemia patients who contracted HCV through blood transfusions during cancer treatment. The study showed that leukemia survivors had higher viral loads at 20 years when compared to other groups of patients with HCV.
These are some of the responses I have heard from hepatologists: "That is not true." "They are not related." "I haven't heard that." "Higher viral loads don't mean anything." and "The research has not shown a cause and effect relationship."

I am completely baffled by these responses. I imagine how I feel is similar to how the first persons who developed AIDS felt when confronted with a mysterious illness that the medical community had never seen and did not understand. I trust what the HCV Advocate has to say about HCV and I feel like these are the questions I should be asked my doctor based on my current HCV positive status.

I admit that am worried that since my viral loads are high and I have type 2 diabetes my HCV is now more difficult to treat. In the end, I am worried that the treatment I am going to receive for HCV is a liver transplant instead of antiviral therapy. Most of all, I am perturbed that the hepatologists I have seen
didn't address the concerns I have about my HCV infection.

I don't just want to complain; I want to help make a difference. Are there some small ways I can help with your efforts to advocate on behalf people living with HCV?

Thanks for asking for my feedback. I hope my comments are helpful.


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