May is Hepatitis Awareness Month – NVHR is going Back to Basics to raise awareness of hepatitis A, hepatitis B, hepatitis C, and hepatitis D. Click here to check out our other blog posts in the 2022 Hepatitis Awareness Month advocate series.
May is Hepatitis Awareness Month – NVHR is going Back to Basics to raise awareness of hepatitis C, hepatitis B, hepatitis C, and hepatitis D.
As part of Hepatitis Awareness Month, NVHR is celebrating the contributions advocates are making in raising awareness for viral hepatitis. NVHR recently sat down with San Juan Caffey Jr., an engagement specialist at Williams and Associates whose agency specializes in HIV, Hep C and STD prevention and treatment services.
NVHR: What would you like to share about your journey with Hepatitis C?
SJC: I’m a recovering addict. Due to my prior drug use, I was not eligible for hepatitis treatment even though I could receive treatment for HIV. I was told I had to abstain from drugs and alcohol for 3 months before I was eligible to start treatment. So, I lied and said I was clean. I was high on drugs the day I started my treatment, but somehow the test came back clean. I took this as a sign to take my treatment seriously and it motivated me to stop using. I never missed a treatment and now I am cured.
NVHR: How do you feel you can raise awareness about Hepatitis C in the community?
SJC: It’s important that we meet people where they are. I started an initiative to raise awareness called the “Shooting Gallery” in St. Louis City. We rent hotel rooms and pass out flyers in areas with high rates of homelessness. We created a monetary incentive for people to get tested, offering ten dollars for taking a hepatitis C test. The first day we tested 17 individuals. Five tested positive and three of them were unaware they were infected. It is imperative that we are proactive in these communities. Since the Shooting Gallery’s implementation, we have received grants and have been fortunate enough to partner with other agencies. We have also seen other harm reduction organizations using similar approaches because it works.
NVHR: What message would you like to share with your fellow patient advocates?
SJC: Hepatitis C needs more focus and attention. There seems to be a much larger focus on other disease states such as HIV although many more people are infected with hepatitis C. Hep C is a silent killer – many people are unaware of their status because of a lack of symptoms. When we go to outreach events, many patients are blindsided by positive hepatitis C results.
NVHR: Finally, is there anything you wish you would have known when you started your Hepatitis C journey?
SJC: I wish I had someone in my corner, someone to support me to let me know everything was going to be okay. I would have done it sooner had I known it how easy it is to get tested and that treatment cures most people (>90%) in 8 to 12 weeks. However, stigma continues to be a big barrier to testing and treatment for hep C and we need to eradicate that. With the pain that I have endured throughout my life, hepatitis C is easy by comparison. No one ever talks about the good that comes along with treatment, only the pain and negativity. No one speaks about seeing the color come back into your skin and the energy you feel coming back into your body. I want other people to know about these things, not just the negatives.