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Tuesday, May 11, 2021

Fw: Ref.: (LML) Leprosy Cure

 

 


Leprosy Mailing List – ,  2021

 

Ref.:  (LML) Leprosy Cure

 

From:  Joel Almeida, London and Mumbai

 

 

Dear Pieter and colleagues,

Dr. Laila Laguiche has asked a very important question. She specified clinical and laboratory criteria. Esteemed colleagues can do it better. But her thoughtful question invites answers. 

 

In HD (leprosy), perhaps we could consider something along the following lines, to minimise harm and maximise legitimate entitlements for persons who have experienced HD.

Cure is restoration to a state of health and wellbeing, such that special and specific interventions are no longer required. That is, they can be withdrawn without risk of serious harm to the person or others.

 

For medical cure, it is restoration to a state of health and wellbeing that outlives the withdrawal of medical interventions. In most self-healing persons with HD, who escaped permanent sequelae, cure might be attained rapidly, within days or weeks. For the fastidious, viability PCR of tissue biopsies, with appropriate negative controls, probably offers the best sensitivity and specificity. However, it is important to recognise the other patients, especially the subset of LL patients who remain anergic and vulnerable to reinfection even after MDT and MIP immunoprophylaxis. They start MDT with an astronomical number of bacilli. In endemic areas they need ongoing protection against re-infection and ENL episodes. 

 

For epidemiological cure, it is restoration to a state of health and wellbeing sufficient to pose no risk to the health and wellbeing of others even if specific interventions are withdrawn. This might take more than 12 months in persons with genomic anergy who live in an endemic area. This holds true even if the most potent anti-microbials are used, since sources of concentrated viable bacilli remain available for reinfection. However, mass multi-drug administration tends to shut down nearly all sources of highly concentrated viable bacilli almost instantly, in even hyperendemic hot spots. This is effective alongside integrated skin camps (with expert clinicians in person or by telemedicine) and MDT for newly diagnosed patients. Only armadillos (in the Americas) have highly concentrated viable bacilli that easily escape mass multi-drug administration. People in the Americas might need to keep a safe distance from armadillos and their haunts.

 

If mass multi-drug campaigns in hot spots are repeated relentlessly at intervals of less than a year, until no child case of HD can be found for a few years, then even genomically anergic patients are likely to enjoy epidemiological cure. Otherwise it is necessary to  protect genomically anergic patients well beyond 12 months of MDT. Then the incidence rate of recurrent highly bacillated HD in that population is likely to remain less than the incidence rate of new highly bacillated HD. Otherwise, difficult-to-diagnose recurrent HD can become the main source of concentrated viable bacilli in a population. This has been happening too often in recent decades, leading to stagnation (or worse) in new MB cases/year despite all other efforts.

 

Socio-economic cure might consist of establishing a state of health, wellbeing and inclusion that outlasts the withdrawal of special financial or other extraordinary socio-economic assistance. For a person who has lost eyesight, limbs, schooling, training, family and community, such special assistance might need to last longer than a few years. Possibly until their last breath. In areas where persons who experienced HD are discriminated against (e.g., by denial of land ownership and various entitlements available to others, or by social exclusion), socio-economic cure might require sustained public education. Winning the hearts and minds of the public and legislators might take much more than a few days or weeks or months.

 

Psychological cure might consist of establishing a state of health, wellbeing, inclusion and meaningful activity that survives the withdrawal of special psychological or related interventions. Emotional wellbeing is sometimes achievable despite horrendous adverse circumstances, such as extreme poverty, hunger and exclusion. However, emotional wellbeing can be facilitated by preventing or alleviating the excruciating pain of ENL, or of social exclusion, or incapacitating wounds, or extreme poverty. Spiritual practices too, alongside amelioration of adverse circumstances, have been known to help many individuals.

 

Legal cure might consist of enforcing rights that are open to litigation under national and international laws that are consistent with, or are newly legislated to be consistent with, the Universal Declaration of Human Rights. Legal settlements or judgments might be easier to achieve with legal aid for those who have experienced HD. Public education and political activism might be necessary, to influence legislation. To the extent that courts and politicians find us persuasive, all persons who have experienced HD and inhumane neglect or denial of rights will enjoy legal cure. Eventually.

 

Inhumane neglect currently is inflicted on too many persons who have experienced HD. This sadly includes widely enforced anti-microbial neglect of persons with polar LL HD who have completed 12 months of MDT. In the past two decades we have allowed them to suffer excruciatingly painful ENL episodes, pushing them deeper into extreme poverty. Some of them, in poorer areas of endemic countries, are forced to survive on only a few US cents per day. Prolonged anti-microbial protection can make a big difference to them, helping to break the downward spiral of ill health and extreme poverty. They need not be denied prolonged anti-microbial protection..

 

I hope esteemed colleagues will contribute answers to Dr. Laila Laguiche. She specified clinical and laboratory criteria. I have not been able to pinpoint those. Nevertheless, it is truly a privilege to be part of this thoughtful and noble-minded community brought together by LML. We can all keep helping one another to improve our understanding so that we achieve great outcomes and impact for the people we seek to serve. There are not many greater fulfillments in life than preventing or alleviating avoidable human suffering.

 

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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