Learning from AIDS to deal with Covid-19 stigma

Filepic/The Star

There is an alarming emerging trend of resident associations and condominium managements requiring the disclosure of confidential medical information related to the Covid-19 status of people living in their neighbourhood. There are demands for test results, copies of passports and pictures of those who are positive. Most are aimed at foreigners. Residents are encouraged to inform on their neighbours. All this is being done supposedly in the name of collective protection, safety, and security.

This is a challenging and uncertain time for everyone. With daily new Covid-19 numbers reaching record numbers, no peak in sight to the third wave, and more people in our communities, workplaces and families becoming infected, it is natural that we become increasingly fearful and insecure, not just for ourselves but also our loved ones.

The threat of death and disease, coupled with the general lack of knowledge of how Covid-19 spreads, and the need to blame someone for the pain and suffering that we see among those infected and affected, have led to a cloud of stigma.

Stigma now surrounds Covid-19, the people, and communities that have contracted the disease. It is causing prejudice, discrimination, and xenophobia, widening inequalities, increasing vulnerabilities to violence, harassment and ostracisation, and hampering public health measures intended to manage the epidemic.

There are increasing reports of people and families who have recovered from infection or been released from home isolation or quarantine being marginalised or ostracised by their neighbours, family members, communities, and even loved ones, resulting in additional anxiety and risk of falling into depression. People have been blamed for supposedly bringing Covid-19 into housing areas and condominium complexes. Fingers were pointed at migrant workers when they were disproportionately represented in the daily statistics, which led to crackdowns by authorities, and caused fear and anxiety among even documented foreigners.

Former patients have lost jobs after their recovery. Families have been told to leave their rented homes. Tragically, out of a sense of overwhelming shame and fear of being a burden to their loved ones, some patients have recently taken their own lives.

All around the world, for those who have worked on AIDS for the past four decades, this sounds altogether too familiar. The same challenges, problems and harm of stigma and discrimination seen in that epidemic are manifesting in the Covid-19 pandemic. But amidst the ongoing tragedy, there is an opportunity.

We can apply what we learnt from 40 years during the AIDS pandemic to what is happening today, to address Covid-19 stigma. We do not need to repeat the same mistakes. We should not lose more lives through abuse, harm and suffering caused by Covid-19 prejudice and discrimination.

In our fear and frustration, we must resist adopting draconian measures which degrade or compromise on human rights and dignity.

Past successful responses to public health emergencies have demonstrated repeatedly the value of grounding them in human rights. We learnt the hard way from the AIDS pandemic that approaches which depend on punitive measures, shaming and discrimination, undermine public health objectives and fail in the long run. They end up doing more harm than good.

Solidarity, empathy, and compassion reduces suffering, protects public health, and save lives. New Zealand has shown that when empathy and compassion are coupled with competence and firmness, the Covid-19 outbreak can be managed effectively and decisively.

To address Covid-19 stigma, we have to do better in four areas.

Firstly, we must humanise the Covid-19 epidemic. Today, the people and lives which have been touched by this disease are almost entirely represented by the Health Ministry's daily reported numbers of those infected, recovered, needing intensive care, placed on ventilator support, and who have died. The human face of Malaysia’s response to the outbreak is largely missing from these statistics.

Aside from what is shared online in social media, there are barely any stories in the mainstream media of people and their lived experiences of being infected and surviving, of the lives that have been lost. This has contributed to the fear, misinformation, and stigma surrounding Covid-19.

The right to confidentiality and privacy of medical information should be protected. However, there are many who are willing and have volunteered to share their experiences, as patients, caregivers, emergency services and healthcare workers. Giving an opportunity for stories to be broadcast, especially those that are positive and uplifting, will go a long way in dealing with the ignorance and misunderstanding surrounding the disease and towards building a Covid-19 response free from stigma and discrimination.

Healthcare workers, who have been at the forefront of the response to this public health emergency for a year now, have resorted to either posting on social media or covertly sharing their pain, suffering and frustrations with trusted media outlets. Many hope that by doing so, they can inform the public about what is happening in our hospitals and healthcare facilities, the day-to-day realities, and possibly gain public support and empathy.

The fact that they are often forced to do so in a discreet manner, largely to protect themselves from official repercussions, is a disservice to the sacrifices that they and their families have made. They should not have to do this. We need to highlight their stories in the media, listen to their appeals and respond to their requests for assistance.

Secondly, we need to correct negative language that can fuel fear and stigma. We must avoid the use of stereotypical, negative expressions that can create or increase stigma, and focus on inclusive language.

Communities at risk or vulnerable to Covid-19 infection have been described as time bombs, fuelling fear and suspicion. Contracting Covid-19 does not mean someone has less value than anyone else. The migrant worker community, for example, despite their obvious vulnerability and lack of adequate efforts to protect them, has been unfairly blamed for the outbreak, especially in the third wave of infection.

Thirdly, a lesson learnt from people living with HIV is that: “If you take away our jobs, you will kill us faster than the virus.” In our response to dealing with Covid-19, we need to also protect jobs and people’s livelihoods.

Covid-19 and the resulting lockdowns have caused tremendous and unprecedented economic turmoil and impacted thousands of households. Due to lockdowns and closure of economic activities, it has deprived people of livelihoods and caused many families to slip closer towards or deeper into poverty.

It is essential that those affected by Covid-19 face no stigma in returning to their jobs. Workers should not fear that they might lose their jobs if they test positive for Covid-19.

Finally, a key lesson from the HIV response is that exclusion and punitive laws do not work. Every day, from the first time the first movement control order was imposed, we have heard how many people have been fined or arrested for SOP violations. Rather than contribute towards reductions in the number of people being infected with Covid-19, what these reports have achieved instead is create an atmosphere of fear and resentment towards authorities – especially with the appearance of double standards – of anxiety about the stigma and discrimination from being found positive and being quarantined, and of despair when businesses are forced to close and people laid off. Many, particularly those from lower income backgrounds, have become victims of subjective enforcement.

With the number of new Covid-19 cases reaching record numbers, this emphasis on a punitive approach to disease prevention and control should be reviewed. This is a public health emergency, not a war. There are no winners or losers, good sides or bad sides.

In this public health crisis, we need to look to our common humanity. Anyone can get infected during this global pandemic. Covid-19 does not discriminate, and neither should our response. We should treat the individuals and communities affected by Covid-19 how we would wish ourselves to be treated, with empathy and compassion.

Government, community leaders and public health officials can lead by example and help prevent stigma and discrimination.

No one is safe until we are all safe, and stopping stigma is critical to making our communities safer and healthier. We need to work together to prevent and address stigma.

AZRUL MOHD KHALIB

Galen Centre

Note: The writer is the head of Health & Social Policy at the Galen Centre, a public policy research and advocacy organisation.