I am a 57-year-old white American male infected with Hepatitis C. I am involved in a controlled medical research study by Roche Pharmaceuticals of an experimental Polymerase Inhibitor (RO5024048 also known as RG7128) drug therapy for the virus. This document is the story of my illness and the experience of treatment. My lovely and pretty damn wonderful wife will be contributing her take on the experience as well.

Tuesday, September 11, 2012

Liver Walks and Liver Disease PR



I've always wondered why folks with liver disease didn't organize events focused on Hepatitis, Liver Cancer and the other diseases that can devastate the liver. Was it the broad diversity of the afflicted group? Embarrassment about admitting to the disease? Shame about the possible, or definite, way the disease was acquired? Indifference due to the long time-span the disease takes to get really serious? A combination of all these? Who knows?

I arrived in San Francisco during the mid-1980s. It was ground zero for the raging AIDS epidemic. The AIDS afflicted community, mostly gay, began to mobilize early on to militate for research, awareness campaigns within the community, demand for drug research, medications and for companies to supply medications affordably. Perhaps because so many shared a common sexual orientation and a definite us vs. them mindset, the community was more predisposed to organize. Whatever the reasons, the AIDS community jumped in with both feet and as a result, AIDS awareness, research, drug availability and prevention education garner a great deal of attention throughout the country.

It looks like the liver disease community is starting to mobilize as well. The Fair Pricing Coalition  has been active in protesting the costs of treatment drugs, celebrities with liver disease have begun to come forward, and finally, The Liver Foundation is sponsoring a series of  Liver Life Walks in cities across the USA.

The Walk for a cause model is one of the oldest and most effective tools for raising awareness of a cause. It spreads far wider than the walkers themselves as family members, friends and sponsors of the walkers all become more aware and more likely to be talking about the theme of the Walk. It is also great therapy for the participants as they can band together to say that the status quo is no longer acceptable.

I urge anyone who has Hep C, knows someone who has it or, sadly, has lost someone who had Hep C, to join a walk, support a walker, or just talk about Hep C if the subject comes up. The more people know about it, the more likely they are to get tested, seek treatment and live better lives.

As my lovely wife put mentioned in the previous post, we formed team Heprat for the SF walk and will be walking the, extremely civilized 1.5 mile, course this Saturday, Sept. 15th. The week after there is one in Mpls/St. Paul, MN. and so on and so on. As the street hawker might say, Check It Out!

Saturday, September 8, 2012

Support Team HepRat For the September 15, 2012 Liver Life Walk in San Francisco



I've joined the Liver Life Walk in San Francisco as part of Team HepRat, in honor of my husband, the author of this HepRat blog, who has recently struggled with liver issues and the side effects of current treatments. Visit this link to read more or support our cause: GO TEAM HEPRAT!