NOhep supporter spotlight: Rick Nash
Rick Nash is a hepatitis activist based in the USA. He is also director of education and outreach at Open Biopharma Research and Training Institute. His role entails facilitating conversations between patients, non-profits, the industry and healthcare professionals to bring the patient voice in the pharmaceutical development and find ways to reduce the cost of pharmaceuticals.
As a former hepatitis C patient and a liver transplant recipient, Rick first got involved in hepatitis advocacy in 2011. Over the last decade, he was a contributor to HepatitisC.net and HepMag and a peer counselor at Help4Hep. He has worked with many hepatitis advocacy organisations including California Hepatitis Alliance (CalHEP) and the American Liver Foundation. Rick has been a patient advocate and a part of NOhep since we first started.
“I was diagnosed with hepatitis C when I was 12 years old. At the time of my diagnosis the only available treatment was less than 30% effective. The doctor told me that I will need a liver transplant by the time I’m 30, or I will die. My hepatitis C journey was long and treacherous, with multiple failed therapies, temporary disability and a liver transplant. In 2017, 18 years after my initial diagnosis I was finally declared hepatitis free.
Before my liver transplant my health deteriorated and I became disabled. I wanted to share my story so I started writing about my experience for hepatitis magazine. Writing for the community is what started my advocacy work, but I knew I wanted to do more. I worked with mentors from the HIV/AIDS community to develop my advocacy craft. At the height of my disability, I had the opportunity to speak to the CA State Assembly to push for a three-step programme to test, diagnose, link to care and treat people living with hepatitis. I stood in front of the committee leaning on my walking cane as I told my story. Although there is normally a two-minute limit, I was not interrupted as they allowed me to share my entire hepatitis journey.
Recently, COVID-19 has had an impact on elimination efforts, as well as my own hepatitis advocacy. As a liver transplant recipient, I am immunocompromised putting me at higher risk and unable to engage in any face-to-face activities. Therefore, I moved my advocacy back online through social media engagement and just recently, a podcast series. In addition, I am conducting research on the stigma forming around COVID-19 to see what we can learn from it, and how we can apply our knowledge of hepatitis C stigma to reduce it.
My experience has inspired me to start writing an advocacy book outlining my story as well as the stories of my friends and family to show how the virus affects not only the person living with hepatitis but also the wider community. My goal is to share the book with policymakers as an advocacy tool to help them build empathy and see that people living with hepatitis do not deserve the stigma that the disease carries. I hope this will allow me to amplify the voices of those who are not heard. I want to use my own story to achieve a big advocacy impact.
I would love to see hepatitis elimination by 2030. Every country faces unique elimination challenges, such lack of nationalised healthcare and delivery of drugs for hard-to-reach communities. Cost of treatment is often quoted as the biggest barrier to hepatitis elimination. However, this is just a smokescreen as there is a clear financial case for hepatitis elimination. I believe that stigma remains the biggest global challenge to achieving hepatitis elimination. In many communities, hepatitis C is still associated with intravenous drug use, and without countries committing to changing the cultural view surrounding drug use, the stigma will pervade through our society. To achieve elimination, we need to do a better job of critically looking at barriers in every country and devising a plan to take down these barriers.
NOhep for me symbolises a greater goal, the goal of bringing everyone to the table. It symbolises a universal opportunity for humankind to get together and solve a problem that has been plaguing us for centuries. NOhep also represents a universal goal of community through unity. I have never felt more connected to the global community thanks to NOhep. Whenever I talk to someone with hepatitis C we have the common ground and it builds comradery. It shows that we can move beyond the standard diplomatic boundaries and help people who are dealing with the same thing no matter where in the world they are.”
