Leprosy Mailing List – March 28, 2024
Ref.: (LML) Social exclusion of persons who experience(d) HD
From: Joel Almeida, India
Dear Pieter and colleagues,
In response to a petition from a former HD (leprosy) patient, The Delhi High Court declared:
"This Court is in agreement with the Petitioner that leprosy affected persons are equal members of our society and discrimination against leprosy affected persons is clear violation of Articles 14 and 21 of the Constitution of India."
Not many diseases require similar declarations from the court. We would certainly wish for HD to be regarded as just another disease. However, it is not yet so. Not many diseases result in people living in "colonies" outside the mainstream. This aspect is not even contemplated by most of the standard scales of socio-economic status. It is a reality for too many people who experience(d) HD.
Likewise, many laws discriminate against people who experience(d) HD, and few if any discriminate against people with other diseases.
India detects over 100,000 new HD cases each year, on average. India also has examples of enlightened legislation, aimed at protecting persons who experience(d) unjust exclusion, negative discrimination, or atrocities.
For example, the Indian HIV & AIDS (Prevention & Control) Act, 2017 requires the written assessment of a qualified and independent healthcare provider competent to do so that such a "protected person" poses a significant risk of transmission of HIV to other persons. Only then is any kind of discrimination tolerated, by law, in India. In HD (leprosy), no such written assessment is required. Instead, even patients who for practical purposes shed no bacilli are too often told that they pose a threat to their contacts.
The experience of other excluded groups could be relevant, in considering remedies. For example, social exclusion of persons belonging to "Scheduled Castes" or "Scheduled Tribes" is an acknowledged challenge in India. These are groups of people who for generations were treated less favourably than others. They are forced too often to live in "colonies" outside the main village or mainstream. Special legislation and special socio-economic schemes have been introduced, aimed at remedying the wrongs. The Protection of Civil Rights Act 1955 and the Prevention of Atrocities Act 1989 are in force. The latter is represented as an Act "to prevent the commission of offences of atrocities against the members of the Scheduled Castes and the Scheduled Tribes, to provide for Special Courts for the trial of such offences and for the relief and rehabilitation of the victims of such offences and for matters connected therewith or incidental thereto." They may be persons like any other, but they have not been treated so. The wrongs are sought to be righted.
Among the many unique challenges faced by people who experience(d) HD, not all are attributable to ignorance among lay persons. Some challenges are attributable to us health professionals. This is usually not intentional. Exposing the diagnosis of HD to others is not exactly respectful of the human right to privacy, confidentiality of diagnosis and a good reputation. Exclusion of anergic HD patients from anti-microbial protection in endemic areas seems inconsistent with their right to adequate medical care. These errors are inconsistent with human rights. They also happen to be unhelpful to stopping transmission.
Human rights are an important determinant of socio-economic status as well as an indicator of socio-economic status. People who experience(d) HD and their families too often have been denied human rights. This need not be glossed over in the course of measuring or describing the socio-economic status of people who experienced HD.
Given that we are interested not merely in describing problems but also in devising and promoting solutions, we could brainstorm about the route to a more just and compassionate world for people who experience(d) HD.
No HD patient need be discriminated against in any way absent a written assessment from a qualified, competent professional that the individual patient poses a significant risk of transmission of HD bacilli to other persons (e.g., based on demonstration of densely packed bacilli in either nasal smears or tissue fluid from abraded skin or at least widely disseminated lesions). In the absence of such objective evidence of infectiousness, an HD patient deserves privacy of diagnosis. No patient with non-infectious forms of HD deserves defamation or an increased risk of social exclusion.
No HD patient with viable bacilli or persistent anergy to HD bacilli need be excluded from anti-microbial protection in endemic areas. Wherever MIP vaccine is available, it can be used to classify highly bacillated patients into responders and non-responders. Else all highly bacillated HD patients in endemic areas can be included in anti-microbial protection even beyond 12 doses of rifampicin. Patients with other diseases are not excluded from effective medical care and protection. There is no need to exclude from anti-microbial protection those HD patients in endemic areas who remain vulnerable to reinfection.
The description of socio-economic status could also draw attention to the drivers of social mobility, given that we desire change. Financial inclusion matters. Land ownership, accumulated savings, access to reasonably priced financial credit are among the important indicators of potential mobility. (1).
Further, Scheduled Castes / Scheduled Tribes seem to hold lessons for HD in India. Their experience shows that highlighting disadvantages can facilitate remedies. Nowadays some people even strive to be classified (misclassified) as SC/ST in the hope of capturing educational or employment opportunities. In countries such as India with a demonstrable willingness to adopt enlightened legislation, acknowledging the problem seems a useful first step to finding solutions.
Unfortunately, people who experience(d) HD are still too often treated less favourably than others. That can change especially if we highlight the social exclusion and denial of human rights that are overlooked by most standard scales of socio-economic status.
Joel Almeida
Further reading
Tiwari C et al. 2022, Poverty, wealth inequality and financial inclusion among castes in Hindu and Muslim communities in Uttar Pradesh, India
https://onlinelibrary.wiley.com/doi/epdf/10.1002/jid.3626
LML - S Deepak, B Naafs, S Noto and P Schreuder
LML blog link: http://leprosymailinglist.blogspot.it/
Contact: Dr Pieter Schreuder << editorlml@gmail.com
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