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!

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!

World Hepatitis Day – Who Knew?

Thursday July 28, seven days ago, was World Viral Hepatitis Day. The day was dedicated to raising awareness of all types of viral hepatitis and the populations they affect throughout the world. Did you know it was happening? If not for the efforts of the San Francisco Hepatitis Task Force, no one in my city would have known, myself included. Were it not for an email sent out by the task force recruiting volunteers for some boots on the ground outreach at transit stations in the city, it certainly would have passed me by. As it was about 50 hardy souls wore t-shirts, held up banners and handed out information cards during the morning and evening commute hours. Over 2500 cards were passed out during the day and thousands of other folks saw the signs and heard our pleas that they find out about HEP C and get tested. We tried out numerous catchphrases such as: “Do your liver a favor, get tested,” “Seven out of ten people don’t know they have it,” “We never thought we had it,” “If you have a tattoo, you might be infected.” “I never knew I had it,” etc. I irresponsibly came up with a few others such as “If you have a tattoo you are already dying,” “If I have it, so could you,” “Don’t die not knowing what killed you,” “What you don’t know can kill you,” and others. Anything to break through the iPod, cell phone and traffic noise clutter. It was a worthwhile though exhausting effort but it left me wondering why we don’t have better outreach about Hep C.

If you remember the beginning of the AIDS epidemic, the gay community did a fantastic job of organizing to demand research about the disease, research about a cure, better treatment by medical professionals, and fairer treatment for infected individuals. They had the same problem as the HEP C community in that AIDS was seen as a disease that affected mainly people who the mainstream of society saw as deviants. With AIDS the victims were defined as promiscuous, drug using men who engaged in “perverted” behavior. With HEP C victims are seen as drug using losers. (There is a rumor in San Francisco that the local Hepatitis B community decided not to ally with the HEP C community in a previous outreach program because they did not want their cause associated with drug use.) The AIDS community worked hard and eventually triumphed over that stigma (though suburban white folks starting to get the disease via contaminated blood certainly moved America toward the realization that the disease was not the wrath of god, but rather and dangerous virus). They now get vastly more attention than the HEP C community even though there are 4 times as many HEP C sufferers as people infected with HIV/AIDS. Our community of infected people needs to start becoming a lot more aggressive in publicizing HEP C and the fact that is one of a family of viruses that can infect people who have never used drugs or indeed engaged in any behaviors mainstream Americans look down upon.

We can certainly learn some lessons from the AIDS community and lose our apathy, shyness or indifference. It is the only way we are going to get the treatments for HEP C widely distributed at an affordable price so we can save the lives of people who don’t need to die from HEP C.