Discrimination with Hep C
If you think this is going to tell you how to avoid discrimination, think again. Sure, people like me who have had hepatitis C virus (HCV) know enough about stigma to fill a book. Instead, I invite you to look at two sides of HCV and understand how the virus is changing our world today. In the past, most people with the virus were Baby Boomers. That’s my group, and we acquired the virus in a variety of ways. That is not even a topic of discussion any more. Working hard to get treated and cured was our goal, and now, many of us only want to live a quiet, painless life.
However, here's what I learned when attending a NVHR meeting with hepatitis C healthcare professionals...
A surge in diagnosis
A group of people are becoming newly infected at an alarming pace. This new demographic of newly diagnosed adults with hepatitis C is typically younger, and many have used IV drugs. I learned a lot of facts at a recent National Viral Hepatitis Roundtable (NVHR) meeting.
NVHR steering committee
It started when NVHR decided to gather a group of advocates and people with hepatitis C in one room. They choose Atlanta, where the Centers for Disease Control and Prevention (CDC) is based, making it easier for national researchers, doctors, and other healthcare leaders to attend and offer support and insights. I’m not to the best part yet, though...
What happened was that over a hundred people from all walks of life poured into a conference room and began to talk about topics relating to hepatitis C. The word "elimination" was peppered throughout lectures and at focus groups and break-out sessions. Looking for a way to summarize my experience, I thought that elimination would be my own topic here at HepatitisC.net. Yet, another word kept pounding in my brain...
I listened to people who work closely with harm-reduction efforts and heard personal accounts of people unable to get treatment for several reasons. It ranged from the usual claims of low fibrosis scores to doctors unwilling to write prescriptions because of outright discrimination. Sadly, many patients who have or are using drugs are denied treatment until they have a negative drug tests. The group described how their doctors are treating them poorly.
Self-reflection and discrimination
In the past, my eyes were closed to the young adults who were sharing needles because no clean ones were available. I’ve since learned about a program that helps supply clean needles in exchange for used ones. In many states, these efforts are supported by the local health department. Sadly, some are organized by caring people who buy the needles with money out of their own pockets.
I feel a deep compassion for this growing number of people who are infected with hepatitis C. They all need education and support. More importantly, they need to be cured so that they can live long, healthy lives and no longer spread the virus. That will only happen with local, state, and federal officials work to get rid of discrimination with hep C. In the hep C community, we've all experienced discrimination, but we all deserve much-needed health care. I join in and pledge to help end stigma in any way that I can.
Where are you in your treatment journey?