'Villagers Concealed They Had Covid-19 For Fear Of Forced Vaccination, Quarantine'
As the second wave sweeps rural India, people haven't been disclosing their Covid-19 illness due to mistrust in the public health system and fear of forcible quarantine and vaccination, two doctors tell us, and suggest ways to counter misinformation and bridge the gaps in rural health infrastructure
Mumbai: The number of Covid-19 cases is easing off across India but not as rapidly in rural as in urban India. Some numbers themselves are under a cloud, particularly in areas where the quality of reporting is not good. A recent Centre for Science and Environment report said that rural districts had seen almost 52% of Covid-19 deaths and 53% of new cases in May 2021, based on a sample study. It also said that community health centres in rural districts needed 76% more doctors, 56% more radiographers and 35% more lab technologists, which illustrates the nature and extent of the problem.
To understand what India can do to improve hard and soft infrastructure in rural areas, we spoke with two doctors who have been working on some of these challenges. Rajani Bhat, consultant pulmonologist from Bengaluru, is a postgraduate from the Albert Einstein College of Medicine in New York and an American Board of Medicine-certified doctor in pulmonary diseases and critical care medicine. Pavitra Mohan, based in Udaipur, is co-founder of Basic Healthcare Services, a non-profit that has been working primarily in southern Rajasthan. He has an MBBS and MD from Delhi University and a master's in public health from the University of North Carolina. He has worked extensively in community-based primary health care and nutrition.
Dr Mohan, as you look back over the past two months of the second Covid-19 wave, what can you tell us about the behaviour of the virus and people's response, particularly in rural India?
PM: One thing is clear that the virus has spread much more rapidly in this wave compared to the past wave and there have been no divides between urban and rural, or rural and deep rural, or deep rural and tribal areas. The infection has spread in the [remotest] areas, which was not the case the last time. So in some ways, it is actually the first wave for the deep rural and tribal areas. Last year, there was no wave for them, it was largely restricted to urban areas. Some spread happened when the migrants started returning. After a month [of nationwide lockdown], when they were allowed to come back, there was a slight surge, but it was not really a wave, it was probably a small ripple. So for [deep rural areas], it is actually the first full-blown wave. The virus has spread much more and much deeper this time and has not followed any boundaries of urban, rural or tribal.
The way people have responded to [the second wave] has been guided by a lot of fear and also a lot of mistrust of public healthcare systems. I think this led to a situation where the combination of fear and mistrust meant that people stayed indoors. They would not go out to access healthcare, and especially not from the public healthcare systems at all. They would seek care from whatever was available closer by, but avoided the public healthcare systems in general. This is the scene in areas that we work in. I've heard similar things from other people working in similar rural and tribal areas elsewhere.
[Where did] the mistrust have its origin? I think, in general, there has been a mistrust of the public system for a long time in rural areas, partly guided by the fact that services, especially curative services, have not been responsive. Wherever there are strong public health systems, that is not the case. There is greater trust and that continued.
The [mistrust] was further accentuated by the fact that last year when people, especially the migrants returning from the cities, were isolated and forcibly quarantined, that led to a fear of the government and public health systems in particular, and of the disease. [The fear was that] if you said you had Covid-19 or were found to have the disease, then you'll be shifted away. This was of course fueled by social media, news and reports of people dying and all kinds of myths and misconceptions also being propagated through social media. But its roots lay in the distrust and the fear of being isolated and quarantined.
Also, this time, when vaccination started in January before the second wave began, coercion was used to promote vaccination among those who initially had vaccine hesitancy. [Hesitancy] is not uncommon when you're introducing a new vaccine, especially for adults. Vaccine hesitancy is common in all populations. But mistrust deepened because people were coerced and told that if they don't take a vaccine, your name would be removed from old age pension or from the public distribution system. That mistrust, coupled with fear, led to a situation where people stayed indoors. They feared disclosing anything about the disease, or going to a public health system, which in any case they had limited access or response to. That led to quite a bit of delay or absence of care-seeking. A lot of people continued to be indoors even when deaths happened. When they had started slipping, they would still want to stay where they were rather than going to a government hospital in a far-off city. There are of course structural issues which were always there, of distances, of not enough money to reach a large hospital. But it was added to by fear and distrust.
So people could have gone to a public health system and gotten a bed or oxygen if they needed it, yet they did not go?
PM: That's right. There are two scenarios here. One is people who had mild infections who did not really require to go to any [facility], but required support, advice and medication to manage Covid-19 at the household level, or in a setting where they could isolate themselves. Even accessing advice and support for home care is something that they resisted, because of the fear of being found out that they are Covid-19 positive and therefore being isolated and separated from the family. Even when frontline government health workers like ANMs or ASHAs would visit their homes, they would withdraw and not disclose [their illness] and would not want to even receive the medication or advice that was being given.
In the second scenario, where people were moderately or severely ill and started slipping and could reach the hospital, the whole fear of going to a hospital was huge. I was in a debate where [people] were saying why is it that you did not see pictures of people in a hospital in rural areas asking for beds, or oxygen, etc. The reason is that they did not reach the hospitals and often would become severely ill [and] either recover or die at home.
Dr Bhat, tell us about your experiences in this context and the Covid-19 toolkit or resources you're working on.
RB: Dr Mohan has raised all the relevant points that come up in the challenges that we face in implementing science-based protocols, which are useful for the rural health set-up. There are so many challenges in terms of lack of infrastructure, manpower and training. Added to all that is the problem of mistrust and misinformation, which has been a huge problem not just in rural but also in urban areas. We've seen rumour-mongering and myths and fallacies spreading much faster than the solid scientific evidence that needs to be propagated better.
In order to counter that, a group of us have come together to form the Swasth Community Science Alliance. It was born as an organic effort of clinicians and practitioners on the ground, along with physicians, scientists, health economists and people with experience in public health or global health. It is looking to address these challenges of how to help implement the best practices in rural areas where it is most useful. One challenge is that when we come up with evidence-based medicine practices, these are sometimes formulated in areas that have access to the best facilities. So, you put a cut-off point of say, [an oxygen] saturation level for which one must seek hospital attention. One has to keep in mind that there's a lag time in rural areas, where it might take six to eight hours to reach that medical attention. One has to adapt evidence-based guidelines and protocols to take the kind of time constraints that people have in rural areas into account. Then there are the kinds of instructions that are available. Is it a medium of instruction that's easily accessible to the ASHA and ANM workers who are embedded in the community, whom the people trust?
What are the resources available? In response to the rising Covid-19 numbers in rural areas, we've seen a wonderful surge of support from community, corporates, nonprofits and charitable organisations coming to the aid of government health services, by providing material resources. You mentioned that India also lacks manpower and training. To that end, what we're looking to do is provide a suite of toolkits that are easy to understand and access for people in rural healthcare services. This is an alliance in the truest sense because we are guided by serious experienced practitioners on the ground like Dr Mohan. It's only based on the feedback of the challenges on the ground that we get from them that we are able to formulate certain training modules which can potentially help us to counter these problems.
Can you illustrate the key communication areas that you're focusing on? Do these toolkits apply uniformly across India or are there other situations that you have to adapt to?
RB: There are definitely some parts which are universal and adaptable to all parts of India. In the conversations that we've had with people practising on the ground, be it from Maharashtra, or Nagaland, or Tamil Nadu or Karnataka, some challenges and practices remain the same across the board.
Our focus has always been on trying to make sure that we first eliminate any harmful practices. One challenge is that there's been a lot of different medications and polypharmacy that's been thrown at Covid-19. What we've learned over the past year is that the old gold standard practices, the best supportive practices for any viral illness, still hold true and that's something that the system is ready to deal with. It's just about removing misinformation and myths and enforcing what we can do and implement well with the people we have on the ground.
In terms of challenges, they are universal, some are local, some degree of trust issues will be local, according to community practices. But that's where the partners on the ground come in and help us.
We have toolkits that will help us provide home monitoring services, so an ASHA worker or community health volunteer should be able to help families in their communities be aware of what to watch out for, and build trust in order to ensure that monitoring continues and is relayed to the medical officer they report to. The idea being that Covid-19 is a disease where the majority of patients are asymptomatic or mild. So early on when their oxygen saturation is dropping and in moderate illness, even if the district hospitals are overloaded, there is potential for having Covid-19 treatment facilities that can provide oxygen and basic medications and still allow for a much better outcome for patients. It's really a sad state of affairs that we're seeing patients not seeking help because of fear and mistrust, as Dr Mohan pointed out. That's the part that we want to address. There is a large chunk of patients that we can help just by bridging that gap.
Tell us one finding from your research or conversations with doctors across the country which surprised you and to which your toolkits or resources are responding.
RB: One thing that surprised us is the fact that a lot of people think that complicated medications are essential. But we realise that [Covid-19 care] is really a lot about sticking to the basics. It's about good monitoring of vitals. It's about educating people about simple preventive practices, awareness about masking, early identification of symptoms, removing stigma and fear associated with the disease, doing symptom control with simple things like paracetamol for fever, simple practices like prone positioning for improving oxygen, these are the things that are really valuable. We know that it's only in certain patients whose oxygen levels are low that you need steroids. So we are making sure that that kind of information is available, where you tell people that you don't need these expensive medications, that it's a very small minority of patients who need it. The part that's been really important in our work has been to first propagate the do-no-harm practices, to not prescribe these drugs. And it's really been heartening to see the DGHS (Director General of Health Services) recommendations that have come out recently and are very supportive of the best practices that have stood the test of time over decades.
Dr Mohan, you were saying that one of the reasons you're seeing a pushback against the entire health system is the attempt at coercion in vaccination. Assuming some of this is a legacy issue, how is this playing out now and affecting people adversely more than benefiting them?
PM: As I said, there has been distrust and that led to a situation where people would not accept vaccination, thinking that it will harm them, that it is meant to harm them. It's not only the fear of the side effects, it's the fear that they are being proactively harmed. That's where one needs to start working. What we've seen while working with the communities and with families, honest communication about the vaccine, its origin, its value does start melting off [the mistrust].
The other problem, which we have to understand is different from urban India, was both in case of Covid-19 treatment and in vaccination. There are huge barriers for people in rural areas to access any service: barriers of distance, of denial, of cost. A simple example is that if you're bothered about vaccine wastage in a rural area where population density is small, and very few people want to now get themselves vaccinated, the denial of vaccination because of the fear of wastage is counterproductive. Secondly, at the moment, there are barriers of age, there are different ways in which people of 18 to 45 years, or 45 years-plus would get vaccinated. And therefore there are barriers that because you are younger, or you're older, you may not get the vaccine on a certain date. Third could be a barrier of distance, where the vaccine is available only at the primary health centre or in a remotely located sub-centre. So removing some of those barriers, making it freely available to everyone--not denying being the first principle--then [looking at] the wastage or the efficiency of the operations, is extremely critical.
When you said coercion, I'm assuming it's only a threat, because no one is actually deleting people from the rolls or taking away public distribution system benefits.
PM: So these are threats. But the problem is that coercion becomes the major way in which you can implement anything with the communities where there is initial resistance. As recently as a few days ago, cities in some other states that I know of said that if you don't get vaccinated, then you can't open a shop in a given market. These are official orders. So when coercion becomes a primary means, then there is further pushback because one says that 'if it is for my benefit, then let me decide'. And [because of the threat], it is also perceived as something that's not for one's benefit, it is something that somebody else wants you to get.
India has been vaccinating against Covid-19 for almost six months now. Rajasthan, where you work and which has seen a relatively higher proportion of vaccinations, should be seeing the benefit of that. People who have been vaccinated, even if coerced into doing it, perhaps can see that they are either not getting infected or not getting seriously ill, or are they not able to perceive that?
PM: That perception is slow to come. For example, if somebody has been vaccinated earlier, like health workers, then the pushback is that 'you received a different vaccine and what we are receiving is a different one'. Then there is the population density issue. The benefits of even childhood vaccination are not easy to see. Because if you vaccinate 1,000 people of which 10 were to develop the infection and [the vaccine] protected five in a given village, you have actually prevented five infections, which is not very visible in the short term. [Perception change] does require a longer-term, but that is the kind of honest communication that one needs to do. We have been successful in several cases where this honest communication was allowed and other barriers were removed, which led to an improvement in acceptance. But you have to speak that language, and not the language of it being for the public good or for some kind of intangible benefit. People do understand that. That's been our experience in several villages where we work.
Dr Bhat, what's the scale of Covid-19 resources you're trying to roll out, how will it be distributed and how will you measure its working? What's your feedback mechanism going to be like?
RB: At the moment, we're very happily surprised with the scale at which it's rolling out and the kind of interest that we've received from practitioners on the ground, from the community. We've had a tremendous response, whether it is from experienced organisations which have been involved in community health and primary health and rural areas for decades, as well as corporate social responsibility efforts that are partnering with certain aspirational districts looking to roll out these programs and certain organisations which are very closely enmeshed with government health services. The scale of the conversations that we're having goes anywhere between 1,000-1,800 ASHA workers to tens of thousands of community health volunteers in some situations. The idea being that if we can empower people with the right knowledge and information, these people can become change agents within their own communities. It's about distilling the scientific information and making it simple and easy to both absorb as well as share with other people. The success of an attempt like this will be in the fact that people will think it wasn't needed at all. It's when things are not dramatically bad and it seems like things are okay, that's when we know that we've really done a good job.
But that's not enough, we would like to measure what's happening. So data monitoring and evaluation is built into our toolkit. We've tried to keep these documents very simple so it's part of the healthcare worker's daily routine process of being able to document. We've taken into account the fact that there may be limited literacy in some community health volunteers and workers. A simple thing like a photograph of a pulse oximeter on a finger can be taken and sent via a WhatsApp message and it's something that we could capture and be able to monitor. The goal is that the academic institutions we're partnering with, we have Prof Manoj Mohanan and his team at Duke University looking into this, will be able to give us a rather quick turnaround on what are the interventions that are working and what we might need to tweak. [What's also going to be] really useful is going to be the feedback from the partners on the ground. The doctors and medical officers along with the ASHA and ANM workers and their medical coordinators will be giving us feedback. The hope is that the feedback will help us to tweak the programme as needed as we go along.
India does have new Covid-19 medical protocols finally. How do you see this rolling out? Do you see this having an impact at this point, because even while guidelines and protocols come in, they may not be transmitted or received effectively?
RB: That challenge always remains with all guidelines and recommendations. But when we have guidelines that are evidence-backed as well as policy-backed, when we have academic institutions like Christian Medical College-Vellore and government institutions like the DGHS all coming together on the same page and saying this is what the evidence shows, this is what the best practices are after one year of learning about this new illness, that gives us greater strength in the voice that we take to medical practitioners on the ground. So if you are a doctor or a nurse who's practising in a rural setup and someone says 'but why aren't you giving me XYZ drug', you know you have the knowledge to back you to say 'that's potentially harmful'. That's the idea, that we want to try and take the message of first do-no-harm.
We know that the injudicious use of antibiotics and steroids is harmful to patients. I think we have all suffered from the fact that there are certain drugs which were considered 'it can't really harm us that much'. But as much as we try to say that, 'oh, it's not going to harm us', it's taking away from a potentially beneficial practice that one might be able to provide. So instead of prescribing drugs that are not so useful, I would much rather have the community health worker focus on the importance of messaging about masking and vaccination. As Dr Mohan said, that's where we need to focus our energies more. It's about preventive strategies. And there's plenty of evidence and research coming out of neighbouring countries, for example Prof Mushfiq Mobarak's work from Bangladesh, which can inform our practices about how we build bridges to overcome that mistrust that exists in rural communities about the use of vaccines and masking.
The Bangladesh study is about masking, adopting a certain community or a village, and incentivising them to wear masks, right?
RB: Absolutely. It's not just enough to wear masks but that we use them appropriately. The messaging is really important, as Dr Mohan was saying. When you try to make it punitive, that's not quite the same thing as incentivising it as good for the community, for your family and for yourself. I think that messaging is very important for prevention strategies.
Dr Mohan, as we look ahead to a potential third Covid-19 wave, what should we be gearing up for? We've talked about the soft side. Is there something on the hard side that we could do in the near term to be ready for a potential third wave, and in general?
PM: How do we really prepare for something that seems inevitable, but what form it will take can't really be predicted? I think the first important thing is to not to have a sense of complacency, which seems to be setting in at this point of time, in many quarters.
From a rural healthcare perspective, focus on many of the things that we needed to do that were barely coming together towards the end of the second wave. Because, unsurprisingly, our public health systems in rural areas have not been traditionally geared to managing emergencies, even minor emergencies in normal times. Covid-19, of course, was a huge emergency and the capacity of the public health facilities to manage such emergencies has been limited. Immediately, we do need to ramp that up, using the experience of the second wave. For example, use Covid-19 to ensure that we have the ability to manage respiratory emergencies like Covid-19, and others. Oxygen availability is one part of it, but having the right set of knowledge, skills, protocols and referral systems in place is so important, and if we don't do it now, we would be doing a similar goof-up in the third wave as we did in the second wave in many, many parts.
In the second wave, it was excusable to some extent, especially for rural areas, because nobody really expected it till very late and traditionally, we do not have strong public facilities in rural areas. But the third wave would be inexcusable. Ramping up skills, standardised protocols, referral systems and staff in rural areas would be absolutely critical. Surveillance would be critical to ensure that we detect the third wave in a reasonable time. We did again goof that up overall, in that we did not pick up the emergence of the second wave in time.
Finally, as I said, not being complacent and preparing for the worst could be really important from a public health point of view. One of the things we did end up doing by the end of the second wave was to have at least some places where oxygen is available in rural areas, within 30 to 50 kilometres. In the absence of referral, that is still too far. And we do need to equip our primary and community health centres closer to where people live, to be able to manage an emergency and an epidemic like Covid-19, and others. I think we have a short window, of about five to six months at the most, for preparing and putting all of this on the ground.
Dr Bhat, how do we use the learnings from Covid-19 to look beyond Covid itself, so that we can strengthen our rural healthcare system?
RB: [Thanks to the Covid-19 crisis], health has become dominant in the national consciousness. In terms of the kind of response that one gets from communities, in small urban clusters or in rural areas, people are conscious about the need to pay attention to their health, it is part of almost daily conversation now. There are a lot of government initiatives that have taken off, also of nonprofits, corporate social responsibility, who are rising together to build a supportive ecosystem for better health for all. The part that I find really promising is that it's not just physical health, there has been a greater conversation about mental health, there's been a greater conversation about palliative care. All these aspects of primary health or preventive health which were ignored or did not receive the attention that was due to them for the longest time, are now being spoken about in the mainstream. When was the last time that we had these kinds of discussions on national television about every aspect of health and well-being? Not just disease or when something goes wrong in the public health system, we're also talking about the preventive and maintenance aspect of health. That's one of the things that's come about.
The other conversation that we hope to continue is with this Swasth Community Science Alliance, where we're building what's called a community of practice. The idea is to have experts like Dr Mohan, an initiative like ARMMAN on maternal and child health, connecting different initiatives and efforts from across the country, to learn and take best practices back to the communities that they're serving. So that is going to be the future. Now, while we are using this [alliance] to address the challenge of Covid-19, this is something that can serve every other potential health crisis, whether it's non-communicable diseases or new waves of infectious diseases or epidemics that may come along.
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