Leprosy Mailing List – November 18, 2015
Ref.: (LML) Draft WHO Leprosy Strategy 2016-2020
From: Joel Almeida, Mumbai and London
Dear Pieter,
Those urging better prevention of deformity have a strong case. Otherwise, the premature withdrawal of services and subsequent neglect is - in the words of Dr. Barreto - "extremely cruel" to patients. Cruelty to human beings is nobody's intention.
When planning a public health campaign, we need to translate existing knowledge into feasible tasks and monitoring systems. One expert clinician can serve a handful of people, but a good system can benefit hundreds of thousands. We need systematised tasks that can be implemented by an army of workers in the field. This was one of the main considerations when I worked as part of the WHO team defining and launching the DOTS strategy against TB.
Population-based sample surveys show that as many as 25% of all leprosy patients who have gone through MDT in India, or about 50% of MB patients, have visible deformity. Fewer than 5% had visible deformity when they entered MDT. This means the habitual strategy in leprosy has been needlessly cruel to patients. India detects over 60,000 new MB patients per year. In 10 years, over 300,000 patients suffer deformity despite treatment with MDT. That is a lot of avoidable cruelty.
The solution is for skilled leprosy workers to monitor the nerve function of MB patients each month, during at least the first 2 years after the start of MDT. That enables prompt anti-inflammatory treatment when required. That's how we can better prevent deformity.
6 months of delay makes anti-inflammatory treatment ineffective, according to the literature. That's why 6-monthly monitoring does not suffice.
In South Asian populations, the vast majority of neuropathy is "silent", according to the literature. Even the patients don't know what's happening in their nerves. Further, many patients in India cannot afford public transport to reach the nearest government health post. That's why India needs skilled mobile leprosy workers to monitor the nerves of MB patients, near their homes, once a month: for at least 2 years after the start of MDT. Then prompt anti-inflammatory treatment can protect Indians against deformity.
Let's make this happen. We would prevent cruelty to animals, so we should not hesitate to do as much for human beings.
Do we know how to achieve zero incidence (WHO's clear 2013 definition of elimination)? If so, why don't we DO it on a small island, and do it quickly? One ounce of demonstration is worth several tons of promises.
Spurious definitions of elimination, or of "burden", help us to congratulate ourselves. Instead of considering leprosy to be a burden on patients, we talk of patients as a burden on services. This merely encourages us to neglect patients, prematurely eliminate them from registers, and then congratulate ourselves for withdrawing services from people in need.
We have largely eliminated leprosy services, condemning hundreds of thousands of patients in India to avoidable deformity despite MDT. This cruelty need not continue. Fortunately, India has resisted the madness by re-instating leprosy workers in some of the worst-hit areas.
Are we really eliminating leprosy? The incidence rate of newly detected cases with visible deformity has increased by over 40% in India since 2008-9. In most diseases that would be called resurgence, not elimination. Whenever somebody mentions elimination of leprosy, we could gently remind them about this increase in incidence rate. Perhaps they will be persuaded to put the well-being of patients above the urge for self-congratulation.
Let's measure, report and reduce the proportion of leprosy patients who suffer deformity despite MDT. Let's monitor the nerve function of MB patients every month during at least the first 2 years after the start of MDT. Let's protect them against deformity by providing prompt anti-inflammatory treatment when required.
We can prevent deformity among another 300,000 Indians over the next 10 years. Let's unite to make it happen.
Regards,
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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