In mid-March, Nelisa Jonas attended the funeral of a retired nurse in KwaDwesi township in Nelson Mandela Bay in the Eastern Cape. Soon after, a number of Covid-19 infections in Nelson Mandela Bay were traced back to this funeral. Since Jonas went to the funeral, she had to get tested.
Jonas told a local radio station that she lived in fear after her name was linked to the funeral on social media. She said on social media people were cautioned to stay away from her because she either tested positive or she was refusing to be tested.
Jonas said when she saw messages from the Department of Health encouraging those who had been at the funeral to get tested, she got tested at Motherwell Health Care Centre. Before she received her results, she says her name was already circulating on social media.
"The Department informed me that I tested negative and no one is taking responsibility on how my name landed up on social media. The community had not taken the news well and people are not comfortable with having me around because they believe I will pass on the virus to them," Jonas said.
Solutions and constraints
Thembisile Nongampula, Eastern Cape Deputy Provincial Chairperson of the Treatment Action Campaign, says there are lessons from the fight against HIV in South Africa that can be helpful in addressing the stigma around Covid-19.
"The best way of dealing with stigma is to use the best remedy we applied during our struggle with HIV/Aids – community mobilisation. As an organisation, however, we understand that the threat posed by Covid-19 is totally different because it is highly contagious and needs us to mobilise in different ways to what we are used to in fighting the spread of the virus."
"Non-physical engagement is the main, primary form of mobilisation. For instance, educating the community using radio and social media platforms to extend the message, and one of the things that will make it more practical, is to have those who recovered from Covid-19 be the face of hope to those still having doubts about the virus," he says.
Traditional leader Nolundi Meji from Port St Johns told Spotlight stigma occurs because people do not understand the virus.
"Stigmatisation is the lack of understanding of Covid-19. Our people still have little knowledge of this pandemic and we can't call public meetings as traditional leaders to educate them more about the danger of stigmatisation because of lockdown regulations," she said.
"We notice that after mass screening and testing was conducted, when the results came back positive, Department of Health vehicles came to infected people’s houses in the villages to inform and pick them up to be quarantined. As soon as the neighbours found out about their statuses, they are subjected to victimisation and insults. I don't understand why people are being victimised for having this virus, as if having this virus is a death sentence. People are recovering, so I don’t see any reason for discrimination against each other,” said Meji.
Nceba Magoxo, Deputy Chairperson of District A (Uitenhage and Dispatch) health forum in Nelson Mandela Bay, agreed. "The root cause of stigmatisation amongst people is panic that is caused by a lack of knowledge about this virus. Unfortunately for us clinic committees, we are unable to do door-to-door and educate people about the danger of stigma because we have not been issued with permits that will allow us to move around."
Post-recovery support needed
Professor Francis Hyera, head of the Public Health department at Walter Sisulu University, says Covid-19 stigma is associated with insufficient knowledge and proper understanding of the disease itself. “This includes the causation, spread, treatment and prevention in general, considering the high infectivity and death rates reported worldwide," he said.
"Currently, stigma is also associated with the use of Personal protective equipment (PPE) especially face masks, of which some communities do not understand the importance. This creates fear among uninformed elders and children as they've never used them before,” said Hyera.
Hyera said the isolation and quarantine measures also play a role in fuelling stigma, leading to fewer people wanting to get tested.
“People need to acknowledge and accept that Covid-19 is a worldwide pandemic that affects anyone regardless of race, culture, age, rich or poor. Community education that involves ward counsellors, religious leaders, traditional leaders and prominent village leaders, is very important.” This, Hyera said, must include education on the means of transmission, prevention, control, monitoring and support to demystify the disease at community level.
"Communities should be encouraged to test for their health and the health of their loved ones to control the pandemic. Testing should be taken as a positive means of combating the Covid-19 pandemic within the country and protect other community members."
He said post-recovery or post-positive testing patients should be well supported and counselled.
'Noting with concern'
Eastern Cape Health Department spokesperson Sizwe Kupelo told Spotlight the department has noted with great concern the stigmatisation of COVID-19 in the province.
“We have created a number of education campaigns like radio ads and distributing flyers to address this issue of stigma. We need more people to be tested so that they will be treated should they test positive for Covid-19. We need everyone to play their part in helping to curb the spread of this virus instead of fuelling the stigma around this pandemic," said Kupelo.
*Note: The TAC is mentioned in this article. Spotlight is published by SECTION27 and the TAC, but is editorially independent, an independence that the editors guard jealously. Spotlight is a member of the South African Press Council. This article was produced by Spotlight – health journalism in the public interest. Sign up for our newsletter.
Image credit: Getty Images