This month marks the end of an era. For more than 21 years, the HCV Advocate appeared monthly. Not only was it published faithfully, I don’t think it was ever late. This is quite a testimony, considering its humble beginnings and all volunteer staff.
I am not going to reproduce what I wrote in my final column, since you can read it here. As much as HCV Advocate editor, Alan Francicus deserves lavish praise, it’s not going to be the focus of my blog today. I do want to say that in my opinion, Alan is the father of hepatitis C advocacy work, and his contributions are forever enshrined in the hope that burned bright in the hearts of all that he touched.
Alan made a difference. We can’t let that difference slip away. We need to continue to fight for health equality and improved services for all who have hepatitis C. We can and must eliminate hepatitis C.
Here are some of the problems I see:
Long time hepatitis C activists and advocates are aging out. We need to inspire and mentor new leaders.
There is a perception that because hepatitis C is curable, the problem is fixed. Sadly, this isn’t the case. The opioid epidemic is driving up the new infection rate. Access to hepatitis C treatment and care is inadequate, especially among those who are marginalized. Funding for viral hepatitis programs is incredibly insufficient.
Hepatitis C continues to be stigmatized. Stigma creates a wall between reality and genuine change. How can we eliminate hepatitis C if we vilify those who have it?
Deaths related to hepatitis C continue to rise. People with cirrhosis are at risk for liver cancer, even if their hepatitis C was cured. Many of these people are falling through the cracks because they equated cure with no more liver disease. But cirrhosis and near cirrhosis (stage 3 fibrosis), need regular monitoring.
An Urgent Plea
If you are reading this, I urge you to ask yourself, “What am I doing to make a difference in the viral hepatitis community?” Perhaps you can mentor someone who is just getting started in hepatitis activism or advocacy. Maybe you are a social media user and you can increase the volume on the conversation about hepatitis C.
Here are more ways to get involved:
- Tell your Hep Story.
- Join up. My favorite organization for information about opportunities for hepatitis advocacy is the National Viral Hepatitis Roundtable (NVHR).
- Help others with hepatitis C. Join the Hep Forums.
- Up your game. Learn about the National Viral Hepatitis Action Plan.
- Stay current. Find the latest news at Hepmag.com.
Create community and amplify the conversation. Speak up on Facebook. You can find Hep there.
- Use social media to raise awareness. Tweet @hepatitismag about what you are going to do today and tomorrow to #StopHep.
Endings Can Be Beginnings
Although it is sad to say farewell to the HCV Advocate, perhaps we can grab the torch and let the essence of the HCV Advocate shine a new light on our future. Are you willing to pick up the torch?