July 25 is National African American Hepatitis C Action Day (NAAHCAD).
Tina Reynolds is co-founder of Formerly Incarcerated and Convicted People’s Movement, Reproductive and Justice Activist and Director of Equity and Inclusion at the North Carolina Survivors Union.
NVHR: What would you like to share with us about your journey with hepatitis C?
As a young adult I had been in and out of prison from 1982-1994. I was serving a sentence of one-and-a-half years at a medium para military prison in upstate New York. It was then I was advised I had contracted hepatitis C.
I began taking treatment medication then, however, the staff at the prison did not give me any educational information about the disease and my doses were very inconsistent. Needless to say, I did not complete the regimen.
I was arrested in 1993 and went to prison pregnant. None of the medical staff asked me or suggested I get tested again. Maybe 10 years later, I went to and endocrinologist. His brother was a gastroenterologist shared the same office. I began feeling tired and didn’t have the same level of energy.
In 2004, I visited the endocrinologist, I was in recovery, eating healthy and exercising, but I began to feel tired. I had recently had my thyroid removed, so I wanted to see if I needed a higher dosage. It wasn’t my thyroid, it was my liver. I waited about five years to take Harvoni and got treated. When I saw the disparities that African Americans face in health care. Most African Americans couldn’t put off treatment like I did to wait for a newer more expensive drug. And most of them aren’t equipped with the knowledge to know they are even taking a drug that may be less effective for them.
NVHR: What does stigma look like in the Black community and how can the legacy of medical racism and medical mistrust be applied to viral hepatitis education?
When you’re a ward of the state, the state is ultimately responsible for your health. The state of New York didn’t do a great job educating these people and, in my opinion, perpetuated stigma and oppression. This can lead to a lack of trust between doctors who don’t look like us. And then there are cases where doctors who look like us look down on us. There is fear and a lack of trust – historically African Americans are distrustful of the medical field because of the things that have been done in the past.
We need medical professionals to show us that they care. It’s easy to know when you’re in front of someone whether they care about you or not from the language they use and the way in which they listen or dismiss your concerns. If your doctor isn’t listening to your concerns, then you aren’t seeing the right doctor and you should make a change if you can.
NVHR: What strategies and assets does the Black community bring to eliminating viral hepatitis?
Eliminating viral hepatitis starts with education. 75% of adults living with hepatitis C are baby boomers. We need to be thinking about the elderly people in our black communities. We have an opportunity to address these disparities by having these conversations where we educate our fellow community members. The North Carolina Survivors Union offers free testing so that people can at least be aware of their status. Knowing your status is powerful because then you can do something about it.
Education helps to build trust. The black community has a particular network that runs through it, and it can be informative and a resource for everyone in the community. It reminds me of the movie The Barbershop, where everyone goes into the barbershop and talks about whomever and whatever they’re up to. That’s where they talk about the doctors who have helped their family members or friends. This is where folks get most of their information. And this information gets passed on through the community.
When you think about the ways in which black people especially are entered into these systems, often they don’t think they have rights to seek medical attention and most of the medical staff are ill-equipped with the right information or just don’t care because they are working in a prison and jail. People become a number and not seen as a person deserving of appropriate medical care. The orientation package each one receives is not as informative about their medical rights as it should be.
NVHR: Could you tell us about lessons from your work on mass incarceration?
Many people don’t understand what their rights are once they enter into the U.S. prison system, and a lot of people feel that they deserve to be there. Many people are there not because they committed a crime but because of a health issue. Drug use is not a crime, it is a health issue, and it should not be addressed inside prison walls or a jail cell. When you think about the ways in which black people especially are entered into these systems, often they don’t think that they have rights and they don’t receive an orientation package that tells them that they have access to medical treatment, blood tests, and other medical assistance.
NVHR: Do you have anything else that you’d like to share with Black people who are living with or at risk for hepatitis C?
Get tested for viral hepatitis. And for people with lived experience using drugs or are currently using drugs, you can still receive treatment, and you should. Don’t let anyone tell you that you need to be in recovery in order to receive treatment. Arm yourself with information about what medical challenge you’re facing and use that education to ask the right questions that are going to help you live the best life for you.
If you’d like to reach out to me, I’m at North Carolina survivors union and my e-mail address is tinar@ncsuunion.org. And please look us up on our website, northcarolinasurvivorsunion.org.