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Stigma, distancing in slums may impede India's coronavirus fight

Sharper communication and community engagement will help tackle ethical issues, says bioethicist Anant Bhan.

Subhra Priyadarshini

doi:10.1038/nindia.2020.57 Published online 2 April 2020

[Edited excerpts from a webinar hosted by Nature India, Translational Health Science and Technology Institute, The Wellcome Trust DBT India Alliance and the IAVI on 28 March 2020. Anant Bhan is a medical doctor and researches global health, health policy and bioethics. He is an Adjunct Visiting Professor in the Department of Community Medicine, Yenepoya Medical College and the Centre for Ethics, Yenepoya University, Mangaluru, India.]

Anant Bhan

Q: There’s a lot of stigma around stigma COVID-19 tests and labelling homes as ‘COVID-19 quarantined’. People find healthcare professionals walking into their houses wearing hazmat suits scary. How can we reduce this stigma and better protect the privacy of people undergoing tests?

Anant Bhan: There are going to be a few challenges as India starts testing more. One, we will need skilled individuals to come into our homes to test us. This will also require them to have personal protective equipment (PPE), and that will increase the cost per test.

Secondly, there is still a fair bit of stigma around either being quarantined or being identified as COVID positive. There are a lot of stories about healthcare workers (living on rent) being asked to leave by their landlords.

The response obviously is community engagement. People need to understand that the only way to tackle this pandemic is to have widespread testing. And if testing is available only at a few central institutions, then it's going to be difficult for everyone to access it, especially given the 3-week lockdown (that began 25 March 2020). 

So making testing accessible, as close as to your residence as possible, is a good idea. Some people might want to pay and get exclusive access to it at home. Will they be comfortable with people walking up and testing them? There is stigma attached to even that.

We need to address the stigma around labeling or branding of households and talk more about why by increasing testing we are actually helping in addressing the spread of a pandemic. People will need to be made to understand and cooperate. If they want access to testing at home and if they want the country to tide over the spread of the pandemic, one way is to test more people, identify people with the disease, isolate them and prevent further spread.

This requires both the proactive engagement of all relevant stakeholders – scientists, policymakers the government – and cooperation from the public to ensure that we don't let stigma come in the way of arresting an infectious disease.

Q: COVID-19 vaccine trials in humans have been initiated in at least a couple of places without animal data and many experts have supported this move. What would this mean from the bioethics perspective? 

AB: From an ethics perspective, there are three important elements – safety, efficacy and cost effectiveness. And it’s the last one that makes the most difference for a low or middle-income country. If the vaccine is too expensive, then how much will we (a country like India) be able to scale up its use is a question. But more specifically, safety and efficacy is what we are really chasing now.

American physician and immunologist Dr Anthony Fauci, one of the most respected infectious disease experts in the world, was speaking to this issue recently in a press conference and he highlighted that we have to really find that balance between ensuring safety and then looking at efficacy. If we skip a few steps, we are also possibly increasing the risk element.

Expediting the speed of vaccine development is important. In the case of Zika or SARS vaccine development was fast tracked, but by the time a vaccine candidate was available the disease had wound down on its own. So speed is an element but you cannot sacrifice safety because there have been enough past experiences where potential vaccine candidates have resulted in disease or infection enhancement and that is not a risk you want to take.

So a judicious mix is required, something which allows phase one studies while simultaneously also doing animal studies so that we don't skip any steps but try to do some steps together. Or reduce the time between the steps so that we don't sacrifice any of the key elements around safety and efficacy. You don't want a vaccine candidate which could potentially harm.

Watch the full webinar here:

Q: How do you think disciplines beyond science can be engaged in fighting this pandemic? We see techies using network mapping tools and creating cluster maps to help understand the disease spread. What kind of innovative partnerships do you foresee to help improve emergency response?

AB: If there's anything we've learned from responding to epidemics and pandemics, it is that the response needs to be multi-sectoral and inter-sectoral. Developing a cohesive response to COVID-19 cannot just be lab science or clinical science or just public health approaches. It also requires working with sociologists and anthropologists, to try to understand how communities understand infection, how infection spreads and how you can enhance community engagement and participation in research.

We have learnt from our HIV response that having all of these approaches and working closely with communities works. You may have a magic bullet but it will not be effective unless people actually are willing to take it.

Same applies to the efficacy of any public health measure like containment or medication or lockdowns. It’s only when people understand why it is important to take those steps and adhere by being convinced about them that you actually see success. There have been several reports in India that people are not adhering to public health advisories. This indicates that there is lack of clear communication or understanding. Working with experts in communications, social work or community engagement can help.

India’s deep expertise in biotechnology can be leveraged. For example, I have just started interacting with a group that is looking at developing an app for contact tracing or some indication of risk, concerns around stigma and around privacy and confidentiality. 

Working closely with each other also applies to the government. The government now understands that whether its logistics, public health response, statistics or coming up with something which people are willing to adopt, requires you to work with a wider spread of sectors.

The landmark Flury's crossing in Kolkata's Park Street bears a deserted look under lockdown.
Q: How equipped to do you think India is to tackle community spread. What happens, for instance, when this virus enters urban slums in India, for instance the case of Mumbai’s Dharavi slums?

AB: A lot of people feel community transmission is already happening because we have had quite a few cases where we are not able to establish contact tracing. Quite honestly, I think at some point of time it doesn't really matter. We are now in a stage where we've seen a lot of states with such cases. We've also seen discrete clusters in many states. So we have to assume that we have to prepare for a surge.

Urban slums or rural areas with a high density of population are going to worry us because once community spread happens there it's going to be extremely difficult to have effective response given that we have system constraints. So the only way to prevent that scenario from happening or to reduce that possibility is to be aggressive in our testing and public health measures. We need to ensure that we are able to test, identify and isolate those who are infected and to continue campaigns around public health measures like social distancing.

Now that's easy for us, the middle class, to say. We have spaces available in our households to do quarantine. But it's much more difficult in a rural setting. I was just talking to a friend who lives in the upper valley in the Uttarakhand hills. They've not had power for 72 hours and the temperatures are around 3-4 degrees Celsius. People are going to burn fires and collect around them. How do you actually preach social distancing in that scenario? That’s the kind of practical challenge in ensuring social distancing. In urban slums, you have one small room shared between many people. How much social distancing can you practice? We have to be realistic about what is possible. 

But within that realism we have to try to maximise the efficiency of these measures and ensure that we prevent spread. If the spread is like in Italy or Iran, it could become very, very difficult as health and social systems can begin to collapse.

Q: What are your recommendations to a community hospital trying to carry out surgeries, especially in the area of semi urgent situations like cancer that fall in the grey zone.

AB: Most hospitals have suspended elective procedures and routine OPD. Emergency care needs to continue and emergency surgical care is a subset of that, and it's very important.

We should make sure that basic services are made available. Just because a lot of resources are being put into COVID-19, we don’t want a rebound of other infectious diseases – we need to be extra cautious about that. Of course, we need to ensure that we are adequately resourcing for a COVID-19 response but not at the cost of basic services at a minimum quality level.

Q: Should India use the Korea model of extensive testing to arrest transmission. Can it be scaled up for a country the size of India?

AB: Each country has to come up with its own model. There are certain lessons to be learnt from every country.

Korea is a good example of bending the curve and reducing the number of new infections with aggressive testing and turning around results quickly. We can get close by trying to identify cases and isolating them. They (Korea) have also used technology effectively. We should learn from all approaches to come up with one that works well for us.

Q: How can an average citizen contribute to this fight against the pandemic?

AB: All of us have a role to play. Try to ensure that you conform to social distancing, wash your hands as frequently as possible, and take care of yourselves.

Whenever there's been some relaxation in a lockdown, just going out into the markets is going to put you at higher risk. Make sure that you use common sense to minimise chances of infection.

People with comorbidities must make sure they continue their medication, get some exercise indoors, take care of mental health, and not get too excited about WhatsApp forwards which claim magic cures. Scientists are working really hard to find something which works. In the interim, it serves us well to just follow instructions from credible sources.

[Nature India's latest coverage on the novel coronavirus and COVID-19 pandemic here. More updates on the global crisis here.]