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With so little known about the cause and treatment of COVID-19, stigma is a major challenge: Mamta Carroll, CEO, Smile Train

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People who have recently recovered from COVID-19, and returned back to their homes, should be strong advocates to end the stigma around the disease, urges Mamta Carroll, Vice President and Regional Director – Asia, Smile Train, in an interview with Akanki Sharma

Share a brief about Smile Train.

Smile Train is an international non-profit organisation, with a sustainable approach to a single, solvable problem: cleft lip and palate. In India, more than 35,000 children are born with clefts every year and hundreds of thousands of children with untreated clefts live in isolation, but more importantly, have difficulty in eating, breathing and speaking. However, cleft reconstructive surgery is safe and leads to immediate transformation. Smile Train empowers local medical professionals with training, funding and resources to provide free cleft surgery and comprehensive cleft care in their own communities. We advance a sustainable solution and scalable global health model for cleft treatment, drastically improving children’s lives, including their ability to eat, breathe, speak, and ultimately thrive.

Since 2000, we have supported over 600,000 free cleft surgeries in India through a network of more than 150 partner hospitals. Smile Train uses the ‘teach a man to fish’ model focussing on training local medical professionals to provide cleft treatment in their own communities. Patient safety is the guiding force behind every Smile Train programme and initiative, and our doctors and associated medical professionals abide by our strict standards to ensure patients receive the best-in-class cleft care. In addition to cleft repair surgery, children may require nutritional, speech and/or orthodontic support for holistic rehabilitation. Our speech therapy programmes ensure each child gains confidence with their smile.

Tell us about the steps taken by Smile Train to help people deal with the COVID-19 pandemic.

Fear of the unknown and life-threatening situations can lead to panic and create a negative reaction in people. With so little known about the cause and treatment of COVID-19, stigma is a major challenge.

As an organisation dealing with stigma faced by children with clefts and parents of cleft babies regularly, we recognise that stigmatisation of COVID-19 needs to be addressed urgently. Thus, Smile Train recently launched #EndtheStigma, a digital campaign focussed on creating awareness around the stigma associated with COVID-19.

In addition to this, 22 of our partner hospitals are directly involved in the treatment of COVID-19. As an organisation focused on safety in medical care, we are supporting the purchase of PPE at these hospitals.

What kind of stigma do you think exists among people around COVID-19, and why? How does it impact their mindset, especially of healthcare workers?

Reports show that frontline workers, medical professionals, and patients who have recovered from COVID-19 have been facing harassment and stigma.

Frontline workers face stigma for simply trying to do their job – people often stop them from entering their homes or communities, assault them and refuse to cooperate. Public and healthcare professionals, who even remotely exhibit symptoms, are ostracised by society in general and face eviction from their homes.

The healthcare workers in the frontline are already under tremendous pressure, seeing loss of life at close quarters, facing a risk to their own lives and living apart from their families. In addition, being ostracised by the society leads them to mental and emotional stress.

Patients who have recovered fully from COVID-19 also face stigma as neighbours, even family and friends avoid them, and they are trolled on social media. Due to this social backlash, patients exhibiting symptoms of COVID-19 fear coming forward due to fear of isolation and separation from their loved ones for a longer period. The fear of stigma has even pushed people to take extreme steps like ending their lives.

When did you launch #EndThestigma digital campaign? How does it make people aware, and encourage them to deal with the current COVID-19 crisis?

We launched the #EndTheStigma digital campaign last month. It is being executed on social media with a series of video messages, highlighting how frontline workers are risking their lives to keep us safe and deserve our respect and gratitude. The campaign also encourages the public to show compassion to COVID-recovered patients.

Stigma is associated with stereotypes, and the only way to get rid of those is to get to know the people behind a particular identity – whether it is a particular race, religion, or someone diagnosed with an illness. Through messages by Smile Train, celebrity supporters like Harbhajan Singh, Paralympian Deepa Malik and Miss Diva 2020 Aline Casteline, team members and partner doctors/nurses who are working in the frontlines, it encourages viewers to be empathetic towards those working on the frontlines and also towards people who have been diagnosed with or cured of COVID-19. Each video ends with an appeal to’ #EndTheStigma and instead support COVID heroes with a smile.’

Till date, how many people have benefitted through your digital campaign in terms of coping with COVID-19? How does this campaign run/function? Is it pan-India?

Yes, the campaign is functional globally. Since it aims to spread awareness, our main metric is the reach of the videos. In less than two weeks, the campaign has reached more than 1.5 million people around India with thousands of engagements such as comments and shares lauding the doctors and frontline workers, showing that the campaign has resonated deeply with the general public.

What can this stigma lead to, and what steps must be taken to fight it?

Overworked Indian medical professionals are now increasingly fighting on a whole new front in the COVID-19 battle, which is a stigma. There is a rise in the cases of doctors, nurses, and other healthcare professionals, on the frontline of the battle, being shunned by others for fear of being infected. This includes the threat of being evicted from their own apartments and general ostracism. This could have a deeper impact on the mental and emotional well-being of both, the health workers as well as the public. This would further lead to doctors and frontline workers hesitating to perform their duty and at the same time delay in reporting symptoms by the patients, that leads to further spread. Delayed reporting is directly proportional to the increase in the number of cases and slowing recovery.

Creating awareness among people and urging them to not stigmatise is a crucial step. Strict penal actions should be taken against house-owners who ask their tenants, which include doctors, paramedical staff, to vacate their homes amid COVID-19 scare and anyone else who stigmatises.

Can stigmatisation, in any way, affect the COVID-19 testing process too? Further, there are people who are recovering from this disease. Can they play any role in ending this stigma? If yes, what? If not, why?

Yes, stigma leads to delayed reporting of the cases by the patients majorly due to the fear of isolation and ostracisation by society. In addition, delayed reporting results into a higher mortality rate and also impacts the mental well-being of the people to a larger level.

People who have recently recovered and returned back to their homes should be strong advocates to end the stigma. They must come forward and talk about their journey, the support they received from the medical professionals, friends, family and society in general, at every step to cope with this deadly situation, recover and bounce back to normal. They must educate people through their experiences and highlight the dos and don’ts to be taken care of during such situations.

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