Leprosy Mailing List – December 22, 2017
Ref.: (LML) Facts in leprosy
From: Joel Almeida, Mumbai and London
Dear Pieter,
The relative neglect of leprosy is a barrier to progress. It also compromises the quality of care for those who develop relentlessly progressive forms of leprosy with disability.
Neglect has worsened in the past two decades. That is because we proclaimed victory. When facts agreed with our narrative of victory, we trumpeted them. When they contradicted our narrative, we questioned or undermined them. We still do this, sometimes. This asymmetry in our approach has been damaging to leprosy control, and contrary to good scientific practice.
Our narrative of victory caused the world to turn away from leprosy. This shrank the funding cake available for leprosy. Now advocates of different approaches squabble over financial crumbs. Worse, those at risk of further nerve damage are reduced to mere pawns in the squabble.
The biggest threat to leprosy control, and disability control in leprosy, is the pretence that leprosy is on the decline. This pretence is contradicted by the evidence from India. That's where well over half the world's new cases arise. The number of newly diagnosed persons with visible deformity at diagnosis roughly doubled in India, in the decade from 2005-6.
The biggest threat to disability control in leprosy is neglect of the evidence about nerve protection.
A randomized controlled trial (van Brakel et al 2003) compared prednisolone, given for 4 months, with placebo. The placebo group had a 158% higher risk of deterioration in sensory scores between the start and end of treatment (confidence interval 19% to 460%).
Despite this evidence, we continue to tolerate neglect of people at risk of permanent nerve damage. We had the services which protected their nerves. We dismantled the services. Now people developing progressive forms of leprosy in India are largely condemned to a 150% increase in their risk of nerve damage. This is an artificial and unnecessary burden imposed on those who develop leprosy.
Our narrative of the decline of leprosy, contradicted by the evidence from India, has also choked off the supply of young scientific talent for leprosy work. Not only have we blundered, but also our mistaken narrative has shut out the people who can rectify our blunders.
What is the solution?
Recognize, and keep reminding the world, that:
1. Leprosy in India has been increasing. The cake of funding for leprosy needs to be expanded greatly to ensure that we control leprosy and control the disabilities caused by leprosy.
2. Indians who develop leprosy are unnecessarily exposed to a higher risk of nerve damage because leprosy services for nerve protection were dismantled. There is a need to re-introduce mobile specialist leprosy workers trained to detect and treat early nerve damage.
3. Leprosy is an infectious disease. This means that it's like a fire that is not at all extinguished until it is fully extinguished. There is a need for new talent to come in and transform the prospects for populations at risk of leprosy. As the funding for leprosy increases, opportunities for young talent will multiply.
Science will prevail, in the end. It always does. We can now help it to do so more quickly by turning away from old errors.
Best wishes for 2018,
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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