Fighting the virus & the stigma

To name or not to name corona virus-infected persons — this has been the subject of debate in the country since the outbreak of COVID-19. While one section of the population has demanded full transparency by revealing details of affected persons, the other has pointed out the danger of social stigma in doing so. In some states like Mumbai, the debate has reached the court.
In Meghalaya, the argument raged on social media even as the government remained adamant about not disclosing names until two persons, Meban Wahlang and Shiavinia Wahlang, voluntarily revealed their identities to ensure the safety of their friends and relatives. The exemplary move — described as “progressive” by Dr Manoj R Basaiawmoit, district medical health officer (DMHS) — not only earned them accolades from the public and the government alike, but also proved crucial in the fight against the disease.
The debate, however, continues and so is the stigma. In a country where everything — from HIV, rape, divorce, Dalits to inter-caste marriage — is stigmatised, it is natural that there will be apprehensions about a new disease that is highly contagious and has the potential to upend a nation’s economy. Bertina Lyngdoh, who came back from Hojai in May and was in quarantine, narrated her experience to justify that names should not be revealed.
“I was quarantined in the Bethany Society hostel. Some of the staff there did discriminate and had asked me to eat separately even after 14 days. I complained to the head (Carmo Noronha) and he probably instructed them because after that, no one behaved differently with me. You cannot deny the stigma factor,” she told Sunday Shillong.
A family in Malki was also upset after the name of the quarantined member appeared in the media without the person’s permission.
But in the neighbouring state of Assam, the government has been transparent from the beginning, giving details of those tested positive as well as those who died of COVID-19. This has helped people to be cautious and aware of the situation in Guwahati city and on the outskirts. There are other states, like Odisha and Uttar Pradesh, which have taken a similar stand on patients’ identity.
A directive from the Ministry of Health and Family Welfare asks citizens to refrain from revealing names or identity of those affected or under quarantine or their locality on social media. The Indian Council of Medical Research also has the same policy on the subject. However, states have the freedom to tweak their strategy to contain the pandemic.
Here, the state government has cited two reasons for not revealing the names — stigma and medical ethics.
As far as stigma is concerned, many Shillongites believe that revealing names, or at least some particulars like locality, will help allay fears which are stemming from vague information.
“Mr Chief Minister, the tweets (about COVID updates) on your page are vague… be transparent. Alert us with facts to prevent further spread,” a social media user from the city had posted on Facebook in June, wanting to know more about the disease, the virus and the status of Meghalaya.
Michael Syiem, a prominent citizen who has been advocating for transparency, believes that revealing names will not only help the government in tracing primary and secondary contacts but also the public to remain alert. “When the government hides information, then people start suspecting. But if it reveals information, there will be no stigmatisation,” he said.
Meban, one of the two persons who set a precedent by revealing his name, also feels that disclosing details of a COVID positive person will help health and other frontline workers in the contact tracing exercise. On what prompted him to take the decision, Meban said, “I do not want to take any credit as I believe it was God who made me do this. I am thankful to all those people who, after the revelation, followed up with authorities. I also want to thank the doctors, frontline workers, my family, the Jaiaw COVID team and the Dorbar for their help and best wishes. I have no internet connection and could not reply to anyone,” said the young hero, who was a frontline worker and is now under institutional quarantine.

Stigma & why

The deplorable incidents of discrimination against patients at health institutes in the city are proof that limited information can be dangerous. Residents of Umpling could not get medical help because several BSF jawans from the cantonment area in the locality were tested positive. In another case, an infant died because Ganesh Das Hospital refused to provide treatment as the mother was from Mawlai Mawtawar, a containment zone.
Following the Umpling incident, former minister RG Lyngdoh had posted a comment on social media praising the government’s decision to conceal names. Speaking to Sunday Shillong, Lyngdoh said, “There are two sides of the story. The fear of stigma is real. The information and facts are not trickling down to people. That is why there is a lot of confusion and this is leading to fear and the stigmatisation starts.”
Congress leader Zenith Sangma recently opined that the government should come up with a strong legislation or ordinance making social stigma a criminal offence.
The stigma that has been attached to COVID-19 is due to lack of awareness among people and this could be a reason for withholding details. According to DMHS Basaiawmoit, people’s understanding of the disease here is below par as compared to the rest of India. Nonetheless, there are “forward-looking localities in Shillong” and how much to reveal should depend on the locality the affected person belongs to.
If people’s understanding of the pandemic and the nature of the virus is in question, then the government should take more measures to spread awareness through local bodies, like Dorbar Shnong. In some localities, like Mawlai Umjaiur, the Dorbar is playing an important role to spread awareness, said headman T Khyriem. “There are two positive cases (one is Shiavinia Wahlang) from the locality but there is no stigma. We are doing our bit to make people aware of the situation,” he added.
According to Lyngdoh, it would be difficult for the authorities to trace contacts if cases continue to rise, and at this juncture, individuals’ initiative to disclose details would help. “However, in this air of suspicion, fear and misunderstanding, it is difficult (for a person to reveal his or her name). I have a lot of respect for the two persons who did it and they did not experience any stigma for that. Instead, people appreciated them,” he said.
Health Minister AL Hek assured that the government has been sharing names of the COVID-19 patients with respective Dorbar Shnong since the outbreak of corona virus for proper coordination.
Prasenjit Dey, the headman of Jail Road, said there has to be transparency about information because it is “not possible for us to detect”. “So far, there is no information from the government about our locality,” he added.

Medical ethics

Earlier last month, the Bombay High Court, while hearing a PIL filed by two persons seeking disclosure of names, said the issue involved privacy rights of a patient. But the pandemic is a different and difficult time for the human race. If an exception to a rule proves effective and helps a community cope with the crisis, then it will be prudent to do that.
A medical student at NEIGRIHMS agreed that “some details”, if not the name, of the patient should be revealed. “If people are aware which locality or building or house or ward to avoid, then they will be cautious. This will help in keeping more people away from the infection. So keeping in mind the privacy rights of a patient, we should reveal certain details,” he said.
On the human rights violation aspect, chairperson of Meghalaya Human Rights Commission Justice T Vaiphei said there is no harm in revealing names.
“If there is any lapse in providing treatment to a COVID-19 patient or a contact person… then there is violation of human rights. And if a patient wants, then why not (reveal the name)? I do not see any problem. The only thing is stigma,” he added.
Referring to the existing patient privacy rule, Vaiphei pointed out that the current situation is different and “I do not think in case of COVID-19, there is any such rule”. But if a person is unwilling to reveal his or her identity, then it should be respected, he added.
Most of the citizens whom Sunday Shillong spoke to said individuals who have tested positive or who are in quarantine should volunteer to reveal names instead of waiting for the government to do so.
“The examples of the two COVID positive persons (Meban and Shiavinia) should inspire others to reveal
their names. They have a progressive mind,” Basaiawmoit said.
COVID-19 is an infectious disease and each one of us is at risk. In this scenario, stigmatising a patient will only boomerang on us in the long run. Panic will lead to chaos and more confusion. Instead of making the crisis worse, individuals should cooperate and take the initiative to educate themselves about the disease, its symptoms, the precautions and how the rest of the world is coping with it. As Meban put it, “The fight is between humans and the virus and this is the time when we should work together.”

~ NM

Photo: Pexels

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