What happened to Nenna Joiner’s mother is getting to be a really, really old story for people living with Hepatitis C.
Joiner’s mother died Nov. 22, 2014, because she could not get access to lifesaving Hepatitis C treatment.
Joiner, 40, of Oakland, Calif., is riding in AIDS LifeCycle this year to raise awareness about this all too common story. She did not even know her mother had Hepatitis C for many years, even though her mom knew she had it.
Serving as one of several spokespeople for the ride, Joiner is using her platform not only to raise Hepatitis C awareness, but also to highlight the reality of HIV-Hepatitis C co-infections. Such co- infections tend to be more common among intravenous drug users and men who have sex with men.
Joiner also is dedicating the ride to all women of color.
“When I heard about (the Hepatitis C), it pierced me, and I had to learn more about it, because I was caretaking for mom at my home,” Joiner said. “She had known for a while. I went to a doctors’ appointment with her and asked (healthcare providers), ‘What are you testing for?’ They just want to give you paperwork and fliers, you know.”
Joiner said her mother had battled alcoholism many years, and had been in the hospital many times. Her mother also is a Baby Boomer. Baby Boomers have been identified as a high risk group for Hepatitis C by the U.S. Centers for Disease Control and Prevention (CDC). In fact, every Baby Boomer in America needs to get tested for Hepatitis C, according to the CDC.
“I asked her, ‘Well what is this?’” Joiner recalled. “And she said, ‘Oh, don’t worry about it.’ Well I need to worry about it. I need to know about it. So I took the paperwork and began reading it myself, and I began to tell people to get vaccinated for Hepatitis A and B.”
Last year, just as Joiner had competed AIDS LifeCycle, she got a call from a friend. Her mom had ended up in the emergency room. She was in Los Angeles and could not be there.
Joiner said her mother was getting help from Oasis Clinic in Oakland. But her mom was unable to win approval for either the new, expensive medications that cure Hepatitis C or a liver transplant.
Oasis is a small clinic that fights for access to Hepatitis C for the most marginalized of the marginalized, including uninsured or underinsured alcoholics and/or drug addicts.
“The whole insurance thing…I was being a good advocate, but with not really knowing anything, I would go with her to the doctor and they would say, ‘Come back in a couple of months, insurance will approve it,” Joiner said. She did not know the ins and outs of working pharmaceutical patient assistance programs or the rest of the red tape that often comes along with winning approval for drugs such as Sovaldi and Harvoni. Often, it takes being a self-advocate to get the medications on top of getting help from a doctor of advocacy group.
“It was a stalemate,” Joiner said. “They would forget things, paperwork was getting lost….I just don’t think (insurers) are doing exactly what’s necessary.”
Joiner said what was even worse was that her mother became afraid to get too close to her daughter, Joiner said, fearing she could be contagious. Hepatitis C is a bloodborne disease and cannot be spread through casual contact such as kissing and hugging.
“I never stopped kissing her or holding her hand,” Joiner said.
Joiner’s messages are: Get tested for Hepatitis C. You may be infected for many years, not know it, and be passing the disease along to others. Hepatitis C can be in your bloodstream for decades before you ever show any symptoms.
Also, if a loved one has the disease, educate yourself about it, and help them seek treatment.
Joiner says she’s get some flak from others for speaking out about Hepatitis C because she owns an adult book store. They insinuate that she thinks she’s changing the world by passing out free condoms.
“People would say, ‘Oh, you own a sex shop, and you’re going to save the world,’” Joiner said. “It’s not the condoms that are saving lives. It’s the information.”
