5 Million Lives Are At Stake
There are some advantages to my husband, James, funding over 90% of our hepatitis C advocacy work. We don’t have to answer to anyone. We don’t get paid and cant get fired or even reprimanded and warned. Of course, we have worked hard to build relationships and trust within the hepatitis C community. We do this all in hopes of gaining influence to serve more people more effectively, and yet we have to weigh that hope out next to the yellow people who are discarded like garbage. What will relieve the most suffering? Playing patty-cake with bigwigs or calling out the people and groups responsible for allowing the deadliest disease in our country to multiply and flourish unrestrained?
It’s Hard to Watch the Hep C Epidemic Be Ignored
We could literally cry when we consider how much money is awarded to some of the non-profits in the hepatitis C community – non-profits that do very little. Money wasted while people die. Shoot, it isn’t just non-profits, its state entities, federal groups, providers, insurance companies, you name the organization and we’ll show you yet another group of people who use the money and resources they have to do very little significant and substantial work in the hepatitis C community.
I’m sure there are some passionate folks dispersed around this country who genuinely care, but today I am pissed and focusing on the large number of organizations who are content to allow people to suffer, turn yellow, and die while they write another report, hold another meeting, have another webinar, walk another walk, or attend another dinner or fundraiser to pay for the salaries, wine, data, and software.
It’s Time to Make a Real Impact
Here’s what is going to make a substantial impact in this hepatitis C epidemic. Work. Real. Substantial. Significant. Hard. Work. I mean in the trenches, with the community, face to face, “let’s do this now” kind of work. It’s going to take passion, selflessness, and mission. This epidemic is big, relentless, and mean. It doesn’t punch a clock or take weekends off. It never sleeps or worries about who it will offend. It isn’t black, white, Republican, or Democrat. It will only be addressed if we too meet it with a commensurate response that doesn’t care about anything but the relief of suffering.
Just today it was announced that another $2.36 billion was given to AIDS. An already overfunded disease while HCV got an insulting $32 million this year. In Colorado, for instance, HIV can get you a free apartment, free medicine, free labs, free doctors, free mental health services, nutrition, rides…you name it. All while hep C gets you NOTHING, not even a test, no labs. Nothing. Except for shame and stigma. In fact, hepatitis C medicine in Colorado is rationed based on moral behavior. Discrimination takes place against hep C patients every day. We turn yellow, suffer, and die, all while no one is held accountable for the discrimination and death.
In general. I am a pretty low stress, kind of, nonconfrontational person. I love my family, and privacy, and could live a contented life with those two things alone. I don’t like to engage in other people business or them mine, and yet here I am considering how to get the attention of everyone and anyone who will listen. It isn’t because I love controversy and drama, its because 5 million lives are worth it.
Anyone else feel the urgency and tired of all the talk? Anyone else mad and even beyond mad into the realm of desperate to see our most vulnerable neighbors protected and served with basic human compassion?