The following story is taken from SANPUD Gauteng Regional Representative Koketso Mokubane's presentation on his personal journey of contracting viral Hepatitis (HCV), given during the Tshwane Substance Use Research Symposium in Pretoria on Tuesday 16th November 2021.
- by Koketso Mokubane, SANPUD Gauteng Region Representative
My name is Koketso Mokubane and with this presentation, I am going to use photographs I have taken to tell my story as a person who uses drugs and my experiences around viral hepatitis. The photographs show my lived experience as a person who uses drugs and my journey of being diagnosed with Hepatitis C and receiving treatment.
There are lots of details which haven’t been included here but my hope is that my story will provide insight into the some of the risks facing people who use drugs in Tshwane and how this treatment can be life-saving for those receiving treatment with direct-acting antivirals.
In this photo, it shows a person living on the street. I was sleeping on the street, and it was a painful experience. As someone who uses nyaope (which is heroin), the pain of sleeping on the street is taken away. My daily routine focused around being able to use, before going to sleep I had to make sure I had something to use. I used to sell cellphone accessories, and after selling an item I would go back and use.
Every day around 4pm I used to start thinking about working for stock and then go to sleep around 10 or 11 o'clock. Before I went to sleep I would inject; on a bad day I would inject between 4 and 6 bags and on a good day I could inject up to 10 bags, with each bag costing R30. This was around 2017; I was initiated on the COSUP programme in late November 2017. During this time, I was aware of some risks - especially that I could get HIV - but sometimes the situation would force me to share, because needles were scarce.
I remember while still using in the streets of Marabastad that I always wanted a way out of using, was always looking for options of things I could do. I would often speak to peer educators from The Harmless Project. I found out that there would be treatment for heroin in the form of methadone. I was called again and was told about a trial study for people who inject drugs and they paid people R100 to participate. I went to the clinic to see for myself.
When I arrived, I was told that they were taking bloods to test for HIV and hepatitis, but didn’t explain much about hepatitis as I didn't know about it. I was motivated by the money because I wanted to use. I got the shock of my life and started to cry when I was told I was HCV positive because I always tried to be safe because I was afraid of HIV. The nurse tried to calm me down and told me that the disease is treatable. I went home with a sore heart. I wasn’t told about any treatment option at that particular time. I asked and was told that treatment wasn’t available but I was told that I can get better if I eat well and take care of my body and live a healthy lifestyle.
For me I see there is a difference between substance use and abuse, however, when one becomes dependent then there becomes a problem.
This photo shows me sharing needles and syringes from a friend, who used to stay near the dealers and borrows needles and syringes to people who come to buy a packet and you will trade with him. That trade would be for 5ml or 10ml of the shot, depending on how much you agree on. These were used needles and syringes, which weren’t cleaned properly after a person had injected; they were just rinsed with water. This was because there was no access to sterile injecting equipment, especially in the townships. To get to a pharmacy, I would need to get a taxi and there was also the possibility that pharmacies would discriminate against me as a person who injects drugs as a nyaope user and not sell a needle or syringe to me.
Once you are already used to injecting and trying to use nyaope in another form you will not get the same high and it won’t take away your allostro (or phatlhoga) withdrawals. When tracing back my steps, this is probably where I contracted HCV. What’s scary is that there are lots of people who borrow needles and syringes daily.
During those months, I was looking for symptoms, to see if I was going to get sick, and for changes in my body. On the street People Who Use Drugs (PWUD) thought that the disease wasn’t that serious. If you quit using the disease it will go away, as we thought the virus is only associated with using. A month later, I was told about another trial study that was providing R200. This study was being done by ANOVA Health and when I arrived at the location, they were taking 10 People who Inject Drugs (PWID) daily – all I knew was that they were going to take my blood and would receive R200. I was part of the 10 and they took my blood. Results came: I was HIV negative, HBV negative and HCV positive. Already I knew my results, so it didn’t come as a shock, but I was told treatment isn’t available as it is very expensive. Then weeks passed, and I met the nurse who was working at ANOVA Health. she called me and told me that there was a mistake with their test kits: some people had been given the wrong results because some of the test kits had expired.
Treatment: I received treatment DAAs, taking two pills daily for 3 months (12 weeks). It didn’t impact my life too much and as I kept it a secret from my family, and they only found out about it when the Connecting With Care video was launched. I was scared because I thought they would reject and stigmatise me because I had contracted the disease through drug use. When my family found out, I had already started treatment and on my way to recovery.
During my treatment I got my pills with my Opioid Substitute Therapy, which is part of direct observation therapy. I only had to take-home doses for weekends only. For others, there were challenges when they received take-home doses for a week or longer due to theft and losing them. Because I was taking my methadone and medication daily at the clinic. There weren’t any days that I missed.
Through my life experiences with drug use and hepatitis and formerly being a peer educator at COSUP my community look at me as a source of inspiration, they are able to see that the is hope at end of the tunnel and through my passion of working and interacting with people who use drugs on a daily basis many out there look at me as a role model, and I always tell them if I can do it so can they I’m also driven by my personal motto which says my success won't be measured by my wealth but by how many people i also help to succeed, through my work I regularly engage with communities of people who use drugs to ensure that their voices are heard and inform advocacy and drug policy reform activities, and most importantly I document their human rights violations making the voices of the most marginalised and stigmatised heard.
I would like to express gratitude to the Community Oriented Substance Use Programme (COSUP) staff at Bosman and the Sediba Hope Medical Centre personal for how they treated me during my hopelessness days as I was able to receive treatment without stigma and discrimination as by verge of them treating as an equal I was able to make the right informed choices about my health.
Big up to Dr Ellen Snyman (the doctor who treated me), my social worker from COSUP, Pam Ntombela, and everyone who supported me as I couldn’t name everyone but you know who you are, and all those that supported me even when I hit rock bottom.