In late July, two COVID-19 facilities in areas where MSF works in South Africa were deliberately set on fire by community members, underscoring the risk COVID-19 stigma poses to the pandemic response and the ongoing need for initiatives aimed at educating both community members and health care workers about the disease.
“Stigma is often found where fear exists. Stigma also thrives where misinformation runs unchecked,” says Dr Liesbet Ohler, Medical Coordinator for MSF in Eshowe, adding that while the South African government’s initial response to the coronavirus pandemic was swift and coordinated, community education has not been universal.
“We see that the number of people admitted to hospitals with COVID-19 is declining in many parts of the country, but we also know that the South African Medical Research Council recently reported 33,000 excess deaths in South Africa between May and August, with experts suggesting that many of these are directly or indirectly attributable to COVID-19 and that limited access to health care services during the lockdown could be implicated, but could fear of stigmatisation also have contributed?” Ohler asks.
Since the start of the epidemic, MSF has supported anti-stigma initiatives in four provinces in South Africa, drawing on the organisation’s previous experience addressing disease stigma through its long-standing HIV and tuberculosis (TB) projects in the region.
“We know that addressing stigma towards people with infectious diseases can be important both in controlling transmission and lowering mortality, because people who are stigmatised may hideaway, avoiding clinics as well as screening and testing initiatives and as a result delaying potentially life-saving treatment,” says Leigh Snyman, MSF patient support manager in Khayelitsha.
In Khayelitsha, MSF in partnership with the Department of Health developed and ran a 60-bed COVID-19 field hospital to support the district hospital during the area’s peak COVID-19 transmission period. Snyman says she and the rest of the team worried about how the community would respond to the facility.
Initially, close contacts identified during contact tracing feared for the safety of their homes and families, and contact tracers had to use unmarked vehicles and wear plain clothes to avoid public scrutiny and stigmatisation. Even patients with non-COVID-related conditions asked MSF workers not to wear hospital clothes during home visits out of fear of being labelled COVID-positive by the community. MSF turned to community outreach and education to tackle the potential stigma.
“For COVID, as we do with new HIV and TB interventions, we took care to consult with community leaders, and on a near-daily basis, our health promotion team shared information on COVID in taxi centres, shopping districts and clinics. Fortunately, the community saw the added value and accepted the Khayelitsha Field Hospital, and many lives were saved,” she says. In Eshowe, consultation with community leaders has been key in overcoming HIV and TB stigma during MSF’s work on these diseases since 2012.
With COVID-19 now making a mark on the district, MSF staff have again asked traditional leaders, traditional healers and other community leaders to support the dissemination of COVID-19 information.
“COVID has come late to the district, but as the number of cases rises we see instances where people are stigmatised, both those who test positive as well as those awaiting test results, and family members report being stigmatised by association,” says George Mapiye, MSF Deputy Field Coordinator in Eshowe. Mapiye feels that active partnership with community leaders to fight stigma is the best response.
“For example, the Muslim community in Eshowe allowed us to use the public announcement system in their masjid (mosque) to broadcast COVID messages on Eshowe’s busiest road and to certain radio frequencies. We were able to get this and other community education initiatives going quickly, thanks to relationships forged during the HIV and TB response,” Mapiye says.
Research and MSF experience suggest that perceived community stigma can lead to poor self-esteem, depression and unhealthy behaviours such as avoidance coping and self-blame. It can also cause the sick to avoid health services out of fear of being discriminated against in facilities, and when it comes to diseases like HIV and TB, community stigma leads many patients to stop taking treatment.
“What we have found is that the voice of the health care worker is a vital anti-stigma tool,” says Snyman.
“Stigma exists in the health care system, too, and if a culture of compassion – what we in South Africa call Ubuntu - can be forged in facilities, especially for patients who, through no fault of their own, have been infected with COVID-19, the battle against stigma is half won,” Snyman says. As of 3 August, 52 MSF staff in South Africa had fallen ill with COVID-19. Thankfully, all recovered, though many reported experiences of stigma.
“When I was infected, I was so anxious, but what kept me going was the support from colleagues, being welcomed back to work,” says Tabitha Mutsiyekwa, MSF Research Manager in Khayelitsha. To boost the confidence of health care workers in Khayelitsha who returned to work after having COVID-19, MSF asked local NGO Ikamva Labantu to produce beaded lapel pins depicting a crown.
“A ‘corona’ is a crown, and the idea is that survivors of this virus in our community will wear their crowns with pride,” says Lulama Sigasana, head of the Ikamva Labantu Seniors’ Programme, a collective of elderly women who sustain themselves and their families by producing beaded artwork, including anti-stigma symbols such as the HIV red ribbon, and now the COVID-19 crown.
The Khayelitsha team has also been combatting stigma through song, composing anti-stigma lyrics and teaching these to clinic staff in facilities as far away as Butterworth in the Eastern Cape, where MSF has supported the development and running of a 30-bed COVID-19 field hospital on the grounds of the Butterworth Hospital.
“In the earlier years of the HIV fight, we would mobilize communities by singing,” says Fanelwa Gwashu, an MSF educator of lay counsellors and also a member of the Treatment Action Campaign, South Africa’s foremost AIDS advocacy organization.
“Our communities sing in the face of challenges. We sing away stigma, we sing away injustice and we sing away barriers to better care. In our COVID-19 song, we tell people that coronavirus will be overcome with love and support,” she says.