Thursday, March 28, 2024

Fw: Ref.: (LML) Social exclusion of persons who experience(d) HD

 

 

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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Tuesday, March 26, 2024

Fw: Ref.: (LML) In Memoriam: Prof. Enrico Nunzi (1941-2024)

 

Leprosy Mailing List –  March 26,  2024 

Ref.:  (LML) In Memoriam: Prof. Enrico Nunzi (1941-2024)

From:  Sunil Deepak, Italy



Dear colleagues,


Prof. Enrico Nunzi, who had dedicated his life to the fight against leprosy and in solidarity with the persons affected with this disease, passed away on 1 March 2024.

 

 

Enrico had studied medicine from Padua university in Italy and then specialised in dermatology and tropical dermatology. He had started working at Genoa university hospital in 1976 and had become its professor in 1989. In 2012, after his retirement, he had left for a few years at the Catholic university in Loja (Ecuador) where he had continued to provide occasional support till his last days.


Influenced by a meeting with Raoul Follereau, his work in leprosy started soon after his graduation in medicine when he had worked at Nden leprosarium in Cameroun (1967-68) and then at Kimbau hospital in RD Congo (1971-72). In 1973, after his return from Africa, he had become a part of the medical commission of the Italian Leprosy Association AIFO, and in this role had organised regular international conferences on leprosy during 1970s and 80s, known as the Santa Margherita Ligure leprosy meetings. in 1977-78 he was in Amsterdam with Prof. Dick Leiker, who had then visited the leprosy department in Genoa for a period in the 1980s.


Founder of Italian Hansen Disease Doctors' Association (SIHAN) and Italian Inter-Regional Centre for Leprosy Research (CIRLEP), he had written and edited numerous books and articles including the Handbook of leprosy in 2012 (with Prof. Massone) and the Handbook of Leprosy & Buruli Ulcer in 2022 (with Prof. Massone e Portaels).


I had met Enrico at the International Leprosy Congress in Delhi, India in 1986. Along with professional collaborations, he had been a dear friend and I will miss him.



Dr Sunil Deepak

Italy

 


LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

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Fw: Ref.: (LML) Measuring socio-economic status in leprosy-affected communities?

 

Leprosy Mailing List – March 26,  2024

 

Ref.:  (LML) Measuring socio-economic status in leprosy-affected communities?

 

From:  Wim van Brakel, the Netherlands


 

Dear Pieter,

 

I would like to offer one comment on the discussion on SES measurement and the helpful contribution of Mr Sathish Kumar Paul (LML, March 24, 2024). He wrote "However, none of these scales include the leprosy impairments.". Perhaps I misunderstood what he meant by this, but I would propose that, when using SES measures or other measure in rehabilitation, it is very important that they are generic and do not include anything specific on leprosy. The socio-economic problems experienced by persons affected by leprosy are not unique to leprosy. A study on SES should therefore use generic and include a control group that is not affected by leprosy in which the same measure(s) can be used.

 

Kind regards,

 

Wim

 

 


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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Sunday, March 24, 2024

Fw: (LML) Measuring socio-economic status in leprosy-affected communities?

 

 

Leprosy Mailing List – March 24,  2024

 

Ref.:  (LML) Measuring socio-economic status in leprosy-affected communities?

From:  Sathish Kumar Paul, India


 

Dear Pieter,


It is in reference to the mail by Dr. Ruth Butlin, LML, March 20, 2024, we at Schieffelin Institute of Health Research & Leprosy Centre (SIHRLC), Karigiri have been using the Kuppuswamy scale, B G Prasad scale and the Udai Pareekh scales to assess the socio economic status of leprosy affected patients coming to the hospital.


The scales though not specifically designed for leprosy affected individuals have been effective in understanding the socioeconomic status (SES) of the leprosy affected individuals. The Kuppuswamy scale and the B G Prasad scales are regularly updated according to the Consumer Price Index for Industrial Workers(CPI‑IW).


The month‑wise CPI‑IW value was compiled and released by the Labour Bureau under the Ministry of Labour and Employment, Government of India. The Udai Pareek scale includes nine domains of SES, that is Caste, Occupation, House, Land, Education, Social Participation, Farm Power, Material Possessions, and Family Member.


However, none of these scales include the leprosy impairments. We currently at our institute are trying to look for any correlation of the SES scale scores with the leprosy impairments. 

 

Thanks,


Sathish Kumar Paul

SIHRLC Karigiri


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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Friday, March 22, 2024

Fw: Ref.: (LML) Socio-economic status, ostracism and epidemiology of HD

 

Leprosy Mailing List –  March 22,  2024

 

Ref.: (LML)  Socio-economic status, ostracism and epidemiology of HD

From:  Joel Almeida, India


 

Dear Pieter and colleagues,

 

People who experience(d) HD (leprosy) are disproportionately found in HD "colonies". Not many diseases of mind or body result in such extreme exclusion. Anecdotes of extreme or even criminal cruelty towards persons believed to have HD are not difficult to find. 

 

Even the family members of people who experience(d) HD tend to be treated less favourably than others merely because their address is recognised as being in an HD colony. It does not seem to matter that these family members have no signs of disease and are virtually incapable of transmitting HD bacilli to anyone.

 

Persons with self-healing forms of HD and zero bacilli in nasal smears are often depicted as dangerous to their contacts. This fear-mongering is contradicted by evidence.

 

 

 (Figure reproduced from Butlin et al, Lepr Rev (2019) 90, 305–320)

 

Persons with few or no bacilli seem to have negligible capacity to transmit bacilli to anyone. Anti-microbial treatment often reduces their own risk of permanent nerve damage, but apparently makes little or no difference to the risk of new HD among their household contacts.

 

The ostracism of persons who experience(d) HD is an important avoidable cause of destitution. Prior destitution might increase the risk of all diseases including HD, but HD  itself currently increases the risk of destitution in a way that few if any other diseases do..

 

Are we opposed to spreading the message that only highly bacillated patients have tens of millions of bacilli in nasal discharges, either before or after MDT (through reinfection)? Is it a bad idea to stop transmission by protecting these few patients with anti-microbials? Is it a ridiculous idea to spare the remaining patients and their families from suspicion? 

HD currently seems to require a tailor-made scale of socio-economic status, to capture its extreme social consequences. These consequences persist in too many endemic areas. As more fact-based notions about the epidemiology of HD gain traction, persons with non-infectious forms of HD will face less ostracism, exclusion of highly bacillated patients from anti-microbial protection will be remedied, and transmission will be reduced more rapidly.

 

Best,

 

Joel Almeida


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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Fw: Ref.: (LML) Measuring socio-economic status in leprosy-affected communities?

 

Leprosy Mailing List – March 22,  2024

 

Ref.:  (LML) Measuring socio-economic status in leprosy-affected communities?


From: Zoica Bakirtzief, Brazil


 

Dear Pieter, 

 

We would be happy to share with Ruth (LML, March 20, 2024) the socioeconomic scale we used in a study in Brazil with leprosy affected communities. It is a validated and used for decades in Brazil to access socioeconomic status of various populations and we found it was relevant to persons affected living in general communities not leprosy hospital or colonies.

 

Kind regards

 

Zoica

bakirtzief@gmail.com

Zoica Bakirtzief, Ph.D. Psychology

Northstarregional -Sugar Creek/MRTC 

Chaska, MN USA

+1 612 449-7142

Whatsapp:  +55 55 99674 8383

 


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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Thursday, March 21, 2024

Fw: Ref.: (LML) Measuring socio-economic status in leprosy-affected communities?

 

 

Leprosy Mailing List – March 21 ,  2024

 

Ref.:  (LML) Measuring socio-economic status in leprosy-affected communities?

From:  Linda Lehmann, USA


 

Dear Pieter,

 

 

Referring to the request by Ruth Butlin, LML, March 20, 2024, I would advise her to contact Dr. Joseph Chukwu joseph.chukwu@dahw.org or Chinwe Eze chinwe.eze@dahw.org to obtain the questionnaire they used for assessing socio-economic status in their self-care studies in the Enugu area of Nigeria.  The tool was not standardize but was reviewed by Eileen Stillwaggon and Larry Sawers.

 

Unfortunately Eileen Stillwaggon passed away but Larry Sawers lsawers@american.edu may be available to help you develop something or may have a standarized tool.

 

 

Sincerely,

 

Linda F. Lehman

Independent Consultant for Disability Prevention and Rehabilitation in NTDs

WhatsApp and USA Cell phone USA:  +1 505 504 8749

lfayelehman@gmail.com

SKYPE: lflehman

 

 


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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