Take the People into Confidence

Without a specific treatment or an effective vaccine in sight to prevent the transmission of the newly identified virus, COVID-19, scores of countries has undertaken an intervention strategy based on a model of health behaviour change. The model calls for a voluntary change in day-to-day practices, and in the case of Corona virus, it is advised that one frequently washes hands with soap and water and practices social/physical distancing. Individuals are encouraged to avoid social gatherings and to adhere to home quarantine guidelines. Identification of cases and contacts followed by isolation and quarantine are also a part of the intervention.

Some countries have gone one step further by declaring a ‘lockdown’ of particular cities or provinces with varied degrees of stringency. India has adopted one of the strictest lockdowns with the help of a top-down approach and policing.

In order to make people aware of COVID-19 and its risks, respective ministries of the national and state governments in India begun sharing information through mass media in addition to other means of dissemination since the beginning of March 2020. However, within a short span of time, a very unsettling response could be observed from many communities, including the ‘educated’ ones.

Contrary to our expectation, the awareness campaigns and initiatives have only heightened people’s fears and apprehensions, leading to greater stigmatization of the disease. Communities have started ostracizing not only infected individuals but even those who have been suspected, including their family members as well as caregivers.

In one village in Bhopal district, aggrieved villagers, upon finding a healthcare team entering their village, proceeded to pelt stones towards them, ultimately forcing them to leave the area. A few members of the visiting team were reported to sustain bodily injuries.

In many cities across the country, landlords have prevented healthcare providers from entering their rented houses, while employees of burning ghats or crematoriums have refused to accept dead bodies and priests have stopped carrying out final rituals before the burning or cremation of bodies.

There have been instances where local residents have collectivized to put a stop to government officials establishing quarantine centres in their blocks. In the same vein, it is becoming more likely that the government may face stronger resistance from local residents in developing any new isolation and treatment centres.

Even though national and local leaders have repeatedly advised the public not to panic, a vast majority of community members have not only become increasingly anxious but have also started casting aspersions on ‘other’ individuals and families coming from outside or living near their localities.

The public fear has reached extraordinary heights; under the supervision of local authorities, tens of thousands of poplar trees have reportedly been axed in Srinagar in the (false) hope that it would lessen the spread and intensity of the Corona virus infection.

THE QUESTION OF the hour is why and how stigma and discriminatory practices are growing so fast in our country?

The route can be traced within the current programme implementation strategies and approaches. Our programming strategies and activities are both directly and indirectly enabling stigma and hatred against individuals and communities. When a government department recklessly publishes names and addresses of individuals who are quarantined or in isolation, it essentially brands them with a stamp of stigma. They are treated as criminals.

In the last couple of weeks, when a cluster of cases were identified from the participants who attended the Tablighi Jamaat convention in Delhi, participants of the event have been castigated and demonized since then even through government reports and notifications. Case reports produced have cited names of mosques and certain religious sites and have also been published in the mass media. This sort of profiling does not serve any interest of a disease prevention programme, but rather helps in alienating communities based on religion, caste, race, and occupation, etc.

Playing a blame game against specific communities is unimaginable at a point when the entire world is trying to forge national and international solidarity to fight against the pandemic. The international guidelines set forth by WHO and other UN agencies have strongly recommended against these kinds of profiling and divisive approaches which fuels stigma, discrimination and hatred, and in turn obstructs and severely reduces the efficacy of health interventions. Respecting the dignity and confidentiality of individuals falls under general human rights provisions, but it is equally important in achieving success in any public health intervention.

That information alone cannot change people’s behaviour is becoming more and more apparent.

The plight of hundreds of thousands of migrant workers in the face of the Corona virus crisis has received quite a bit of media attention. While the chemicals sprinkled on their bodies may not produce a permanent scar, the memory of it will last forever and those among them who were a little more fortunate will also be associated with a similar kind of stigma which will continue to haunt them for years to come.

All these planned and unplanned activities of the government machinery find their roots within stigma and discrimination, and fans hatred. Will these communities ever feel comfortable to avail prevention or treatment services run by the same government institutions?

In some regions, police officers have been found to beat people, including migrants, using batons for breaking quarantine rules. It needs to be stressed here that no public health intervention programme which primarily depends on a behavioural change model has ever succeeded through the exertion of power and brute force. It only results in further stigmatization and criminalization of individuals, groups and communities.

The few incidents mentioned so far represent only the tip of the iceberg, the major parts of which are not visible but continue to weaken the foundation and objectives of the COVID-19 intervention. This signals towards a serious public health concern.

These are not just some ‘troublesome incidents’ which can be managed through bureaucratic and police-led interventions. If not checked with immediate action, there is no limit as to how they would rear their ugly heads, obstructing all important prevention and control activities.

Even the most poor and illiterate who used to reside at the margins of society, like sex workers and transgender persons, collectivized and were empowered to become the driving engine in the HIV intervention programme.

Stigmatized individuals will more often than not hide their symptoms, try to avoid government facilities and will not access services. As has been observed in many other health intervention programmes, especially in the HIV/AIDS intervention in its early phases, major sections of various communities who are more susceptible to the disease avoided all interaction with healthcare providers including field workers.

It might be too late before government institutions realize that those who require more prevention services are taking all possible routes to avoid intervention services, regardless of how benevolent and free those might be. Many will perhaps prefer to die in the silence of their homes rather than be identified as a COVID-19 patient for fear of intense stigma and discrimination.

THE EXAMPLE OF the Leprosy-control programme can serve as an eye-opener. The causative organism behind leprosy was discovered more than 200 years back while the infectivity of leprosy is almost less than one hundredth of that of COVID-19. For Leprosy, there is a cure and effective medicines have been made available. The national government had initiated an elaborate leprosy-control program since 1955, and the goal was to eradicate Leprosy by the year 2000, which has not been achieved.

A major roadblock to the Leprosy-control programme has appeared to be stigma and discrimination. Where is the gap in our awareness-building program?

Even though national and local leaders have repeatedly advised the public not to panic, a vast majority of community members have not only become increasingly anxious but have also started casting aspersions on ‘other’ individuals and families coming from outside or living near their localities. That information alone cannot change people’s behaviour is becoming more and more apparent.

When information is shared with the community, we often take it for granted that community members will process the information in the manner in which we envisioned. However, in reality, individuals and communities adjudge and interpret information using their own perspective, particularly when it is delivered from the top. They link it with their past or present experiences and many of them tend to absorb the information with a pinch of salt.

Interestingly, this approach was initiated by sex workers in Songachi, Kolkata which soon became a national and international model for HIV interventions.

Another significant issue is that most of these campaigns are unidirectional and do not take into account feedback from the recipient’s end. Moreover, there is no mechanism used to collect and reflect on community responses to modify or redesign campaign strategies. The HIV intervention programme, which employed a similar behavioural change model, but differed in its implementation strategy, brought success to the intervention. It followed a community-centric approach by involving even the poorest and marginalized communities. This involved not just expressing empathy towards the most vulnerable and stigmatized, but actually involving them both in the programme design as well as the delivery of services.

Even the most poor and illiterate who used to reside at the margins of society, like sex workers and transgender persons, collectivized and were empowered to become the driving engine in the HIV intervention programme. Interestingly, this approach was initiated by sex workers in Songachi, Kolkata which soon became a national and international model for HIV interventions..

One of the three global indicators to measure successes of HIV intervention programme is the reduction of stigma. It is recognized that without reducing stigma, reduction of transmission and death out of HIV cannot be achieved. How long will it take for us to utilize these learnings in the COVID-19 intervention programme?

The call of the day should be to recognize the role of communities and encourage them to play an active role, not as the carrier of the virus and recipient of treatment and care services but as an able gatekeeper, implementer and owner of the intervention program. Much like the HIV intervention programme, the COVID-19 programme can create an enabling environment which would help them to address social and structural barriers.

Communities should be mobilized without fear of stigma so that they can play a vital role in disease-control initiatives. The introduction of coercive acts, enforcement of penal provisions may only work for a short span of time but will produce long-term negative consequences.

COVID-19 is not going to leave us anytime soon and we might have to contend for much longer with the virus. Thus, we need a long-term sustainable strategy through positioning community and not via police at the centre-stage of intervention.

Dr Smarajit Jana is an Epidemiologist, and Member of the National Task Force on Prevention of Corona Pandemic, ICMR Former Professor, All India Institute of Hygiene and Public Health, and Founder of Sex Workers Organisation Durbar Mahila Samanwaya Committee, Kolkata. Samaita Jana is a Researcher and Social Worker