Stigma drives drug users underground — and away from health services

29 July 2020 - 07:00
By sipokazi fokazi AND Sipokazi Fokazi
Koketso Mokubane is one of many South Africans who had to deal with hepatitis C infection alone due to a lack of awareness and poor access to treatment.
Image: Supplied Koketso Mokubane is one of many South Africans who had to deal with hepatitis C infection alone due to a lack of awareness and poor access to treatment.

After more than a decade of living on the streets and using drugs, Koketso Mokubane has officially been clean for the past three years.

The 28-year-old from Soshanguve in Pretoria — who now works as a peer educator for the Campus Office of Substance Abuse Prevention (Cosap) — has also been cleared of hepatitis C, thanks to the harm reduction programme offered by the NGO.

The programme offers opioid substitution therapy, needle syringe services and hepatitis screening, testing and treatment — mostly to homeless drug users who have limited access to health services.

On Tuesday, Mokubane joined millions of people around the globe to commemorate World Hepatitis Day, which is used to enhance awareness of viral hepatitis, an inflammation of the liver that causes a range of health problems, including liver cancer.

There are five main strains of the hepatitis virus: A, B, C, D and E. Together, hepatitis B and C are the most common cause of deaths, with 1.3 million lives lost each year.

Amid the Covid-19 pandemic, viral hepatitis continues to claim thousands of lives every day.

Mokubane is one of the many South Africans who had to deal with this infection alone due to lack of awareness and poor access to treatment. But Mokubane believes that stigma has been the biggest hurdle to treatment. The scars on his body are testament to his struggles of access to health services.

“By the time I joined the Cosap programme I had stopped seeking care from clinics or hospitals as I saw them as places of judgment,” he recalled.

“Health care workers would give me these long lectures about how irresponsible I was and that the abscesses that I used to get were my fault. So I decided to drain them myself by jabbing them with multiple needles, something that left my body with big scars.” 

Even though he is now a beneficiary of the Cosap programme and has turned his life around, experts warn that the sustainability of harm-reduction programmes is under threat due to stigma.

I think we have to talk about the elephant in the room - and the elephant in the room is probably stigma.
Dr Mark Sonderup

Dr Mark Sonderup, a hepatologist at the Groote Schuur Hospital's liver clinic, said: “I think we have to talk about the elephant in the room — and the elephant in the room is probably stigma.”

Dr Andrew Scheibe, technical adviser to non-profit TB HIV Care, said in addition to stigma, confiscation of injecting equipment by the police and municipal law enforcement officers meant that even the drug users who are part of harm-reduction programmes were still at risk of infection.

“There is still limited understanding among police and law enforcement of the effectiveness and benefits of harm reduction. Progress in some cities is being made,” said Scheibe.

“There is very little access to hepatitis testing and apart from one small pilot in Pretoria and the Groote Schuur liver clinic, there is no other access to hepatitis C virus treatment. The unethically high cost of methadone [opioid maintenance therapy] is another issue.”

A short film, Connecting with Care South Africa, explores the daily challenges and barriers for people who inject drugs in accessing appropriate harm-reduction and health care service. It aims to educate audiences across the country on the importance of overcoming stigma and creating appropriate health care services for people who inject drugs.

The film, which was previewed at the first regional International Conference on Hepatitis Care in Substance Users in Cape Town in February 2020, received first prize in the political and civil support category of the Global Coalition for Hepatitis Elimination video competition for 2020.

“People who come from very vulnerable population groupings could be considered as denizens who don’t have full citizenship in this country,” said Prof Monique Marks from the Urban Futures Centre at the Durban University of Technology.

“They don’t have full access to health care services because they are not seen as eligible, almost, for the rights that other people have.”

The centre, together with several NGOs and the eThekwini Municipality, provides social workers who offer individual psychosocial sessions, needle and syringe exchange, HIV testing and counselling — mostly prioritising people who inject drugs.

Established shortly before the lockdown to protect street-based drug users from harassment from the police and law enforcement agencies, the centre is meant to be a safe space where people using drugs are able “to have some ownership of the space”.

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