The toll of COVID-19 is far greater than the 500,000+ people killed so far, the more than 10 million confirmed cases, the loss of work, and the challenges of social isolation. One of the silent consequences of diseases, especially infectious diseases like COVID-19, is stigma. From the earliest days of the coronavirus outbreak, stigma has contributed to the suffering and the spread of the virus. Initially directed toward Asians and Asian Americans, stigma has spread over time to many people affected by the disease, even health workers themselves.
“One persistent problem in Liberia is the resentment of individuals identified as suspect or confirmed cases, including those who return to the community after being in quarantine centers,” said Dr. Lekilay Tehmeh, Clinical Coordinator for Patient Safety & Quality with the Liberian Ministry of Health, during an April “Global Health Compassion Round” hosted by The Task Force for Global Health’s Focus Area for Compassion and Ethics (FACE). “We’ve even had instances of personal medical information being leaked to the public and press. To respond, we’ve involved psychosocial personnel to reach out to communities, prepare them to receive these people, and eliminate stigmatization.”
This reaction parallels experiences from other infectious diseases. For instance, Ebola kills roughly 50 percent of people infected, with some outbreaks reporting mortality as high as 90 percent. With an unlicensed antiviral drug treatment and vaccine not yet widely available, these high mortality rates have contributed to mass fear and severe stigmatization in affected communities. The situation has improved as local leaders educate their communities about the disease and the response to the epidemic.
Similarly, people living with HIV/AIDS often face stigma, a challenge that slowed the development of effective anti-retroviral therapy and accelerated HIV transmission during the earliest years of the outbreak. And for centuries stigma has arguably been the leading cause of suffering among persons affected by leprosy, also known as Hansen’s disease. Although leprosy is considered a disease of the past, roughly 200,000 people each year are diagnosed, mainly in South America and Southeast Asia, causing severe skin lesions, and if left untreated, nerve damage leading to blindness, disfigurement and life-long disability. Indeed, leprosy continues to be associated with such stigma that a group of persons affected by leprosy recently issued an open letter condemning the use of outdated stereotypes that reinforce discrimination.
In the context of the coronavirus, fears of COVID-19 have led to attacks on health workers. Doctors, nurses and community health workers in India have reportedly been spat on, stoned and beaten with sticks in dozens of incidents following the nationwide lockdown.
A media report quoted a hospital ICU department head saying, “There is also this fear [among all communities] that those who are named as suspected cases or diagnosed with COVID-19 will themselves get stigmatized or ostracised, that people around them will make it difficult for them to live. So they don’t want to be detected…and they are lashing out.”
Through our work on COVID-19, neglected tropical diseases such as leprosy and lymphatic filariasis, and our program on compassion and ethics, The Task Force understands how deeply stigma is embedded within human societies and the massive toll that stigma takes on physical and mental health.
Ways to Reduce Stigma
The World Health Organization (WHO) attributes COVID-19 stigma to three main factors: 1) it is a disease that is new and for which there are still many unknowns; 2) we are often afraid of the unknown; and 3) it is easy to associate that fear with “others.”
Additionally, social distancing, isolation, and safety protections like face masks can reinforce feelings of “otherness” and uncertainty. Since the impacts of this disease affect everyone in the world no matter where we live – a first in our lifetimes – it is important to consider ways we can engage to reduce stigma.
1. Choose our words with care
The WHO chose the name ‘COVID-19’ to prevent the kind of stigmatization that happened in previous epidemics, such as Ebola – the name of a river in the Democratic Republic of Congo – and the ‘Spanish Flu’ – inaccurately named for the assumed origin of the 1918 pandemic influenza. The term COVID-19 is descriptive: “co” stands for Corona, “vi” for virus and “d” for disease, and the ‘19’ represents the year it emerged. The WHO has also called on governments, citizens, media, key influencers and communities to be intentional and thoughtful when communicating about the disease, noting “all have an important role to play in preventing and stopping stigma.”
Local leaders and community influencers can also model this. For example, the Georgia Department of Health website states that people who test positive for COVID-19 or may have been exposed “should never be harassed and bullied, including through social media. We should offer compassion, support via phone and texts, and assistance as appropriate, but never hostility or judgment. It will be much harder to contain the spread of COVID-19 if people are fearful about how they will be treated if they come forward for testing and health care assistance. People who are in isolation and quarantine are providing a public health service to benefit everyone in Georgia.”
2. Learn from people who’ve experienced stigma
In 2019, The Task Force’s Global Partnership for Zero Leprosy hosted a discussion with a Paraguayan hospital chaplain who is a spokesperson for persons affected by leprosy. When Mathias Duck was initially diagnosed with leprosy, he was afraid to share his diagnosis with colleagues and friends, even though he worked as a chaplain with affected people and had prompt treatment that cured the infection.
“I learned firsthand from people who experience leprosy that it could mean that your spouse could abandon you; that you could lose your job; that schools would not admit your children,” he said. “I did not want to be viewed as that guy who now has leprosy.”
Despite understanding the roots of stigma and how misplaced it was, it took him a few years to talk openly about it. “There is this hurdle of fear before you tell someone about it because you make yourself vulnerable,” Duck added.
Duck now advocates for people affected by leprosy and leads an advisory panel that helps shape policy and advocacy in the areas of diagnosis and treatment; destigmatization; and leprosy elimination.
3. Practice compassion
As noted in FACE’s recent blog post, “Challenging Stigma with Compassion,” the practice and promotion of compassion is a powerful antidote to stigma. Compassion involves not only recognizing the suffering of another but the desire to act and relieve suffering. We’ve seen many examples of compassion during the current pandemic: from showing appreciation to health personnel working tirelessly to fight COVID-19 to checking on neighbors to alleviate their isolation and loneliness. All of these acts unite us, allow us to experience our shared humanity, and help us cope with the stressors of COVID-19. Encouraging greater awareness that the fear, uncertainty, and suffering associated with COVID-19 are shared by us all may also prevent stigma.
Championing stigma prevention at every level, learning from and working with those who experience stigma, and promoting compassion as essential to illuminate and alleviate suffering are critical steps to fighting stigma. As a global health organization guided by the values of health equity and social justice, The Task Force is committed to exploring and developing more ways to reduce stigma and promote emotional and mental well-being, especially among those who already face significant challenges presented by COVID-19 and other diseases, so that all people can live healthy, productive lives.
Header photo caption: Entry point screening being conducted during the coronavirus pandemic in Pakistan. Photo courtesy of Nadia Noreen, FELTP Pakistan