A South African man talks about his experience with hepatitis C and why he believes that people who use drugs should be included in the planning and implementation of planning and implementation of evidence-based HIV and hepatitis C prevention, treatment and care strategies.
Koketso Mokubane, a South African man once diagnosed with hepatitis C, stands outside of the Sediba Hope Medical Center in Tshwane. Koketso works as a Community Linkage Office for the South African Network of People who use Drugs, a non-governmental organization supported by the United Nations Office on Drugs and Crime (UNODC), to defend the rights of people who use drugs.
He spoke to UNODC ahead of World Hepatitis Day on 28 July about receiving his diagnosis during a needle exchange outreach program, in which people who use drugs can get clean and unused needles.
I found out that I was Hepatitis C positive in this building.
In 2017, I was accessing the needle exchange outreach program from peers at Marabastad. They told me about a program at Sediba Hope whereby they’d be taking our blood [for money].
My mom died from HIV when I was 14. She was a single parent. That’s when I started using. It became too much for me. It was too much for my grandmother, too. After my mother died, in the span of a week we had lost my grandfather. My grandmother became an alcoholic and sold our house because she couldn’t live with the memories.
At the time I was smoking weed, because I was chubby and body shamed a lot. I thought weed would help me lose weight. But after my mother died, I started using more to cope, then drinking heavily, then I graduated to heroine and anything I could get my hands on.
My life spiraled out of control. We moved to rural areas, and I couldn’t adjust. So, I fled and went to the streets. I was 20 years old.
At the medical center, I didn’t know what my blood was going to be used for. The motivation for me was money for the fix! So, I went. They explained they’d run an HIV test and screening for Hepatitis B and C.
I got the shock of my life when I was told I was Hep C positive. I didn’t know what hepatitis was and was scared for my life.
They say men don’t cry but I couldn’t hold back my tears.
The health care provider was compassionate. She calmed me down, explained what hepatitis was – and that it’s manageable with a healthy lifestyle.
I blamed myself. I got a disease through my reckless drug use.
The prevalence of the disease among people who use drugs was 80 per cent then.
I went back to the streets and kept using, but it was in the back of my mind.
Getting in control
I wanted to get in control of my drug addiction, in better control of my health.
I joined the Community Oriented Substance Use Programme at the University of Pretoria, where I started opioid substitution treatment (OST).
I started taking methadone [a medication used to treat opioid use disorder]. They also took my blood to check for liver functionality.
I didn’t miss a single day. After completion of the 12-week programme, they took my blood again… I had cleared the virus. I also took the vaccine for Hepatitis B.
I was so jubilant and relieved because the programme had a family reintegration program. I started having a relationship with my loved ones again, but because of the stigma I did not disclose my medical status.
My family found out when I was virus free. I’m happy they did when I was clean. Because the only thing I feared was the stigma. It has the potential to trigger me so much that I could go back to the streets or start using even more than before.
What is needed
We need a comprehensive harm reduction package, readily available and easily accessible [in South Africa]. We need to scale-up needle exchange outreach programmes, opioid substitution treatments, and testing, too.
We need to include people who use drugs in the planning and implementation of all programs that are associated with health, that are going to be delivered for them.
They are so very important in debunking the myths and identifying beneficiaries for treatment. They should be employed for demand reduction work, for the campaigns, distributing the needles, etc.
We [people who use drugs] do volunteer work, but it is real work. We deserve the same compensation as medical staff who do the same work.”