Leprosy Mailing List – July 20, 2021
Ref.: (LML) Neglect of persons who experienced HD
From: Joel Almeida, London and Mumbai
Dear Pieter and colleagues,
Recent reports highlight the neglect of persons who experienced HD (leprosy).
Instead of self-settled colonies becoming havens of good health care, and adequate services, they tend to be dumping grounds where excluded human beings are treated by too many as non-persons (using the memorable description of Advocate Pankaj Sinha. He had previously brought a Public Interest Litigation before the Supreme Court of India). These persons are excluded even from registers of persons thought to be receiving competent care. They are too often invisible, even to their well-wishers.
Exclusion of persons who experienced HD, from registers, was disregarded by the bacilli, who kept on producing hundreds of thousands of new cases per year. But that is not the end of the story. Self-settled colonies are prime candidates for exemplary projects where respect for every human being is demonstrated by competent care and adequate services. Ending the anti-microbial and wider neglect of persons in "HD colonies" can demonstrate the impacts of adequate services. We could stop transmission, reduce new disabilities, and start replacing exclusion with inclusion. Such exemplary projects would counter misplaced scepticism, and allow success to spread everywhere.
Excluded people too often have been unable to marry outside the circle of excluded persons. They also tend to be pushed into poverty or extreme poverty. Their predicament is accompanied by some elevation in genetic risk factors and other risk factors for HD. Therefore rapid success in self-settled "HD colonies" would be powerful. Not only would it benefit the neglected and excluded people but also it would help demonstrate to governments and other sources of finance that success is possible everywhere.
The exemplary SHF (Sasakawa Health Foundation) /WHO project in FSM (Federated States of Micronesia) offers important clues about how to achieve rapid success in hyperendemic "hot spots". Every self-settled "HD colony" could be freed rapidly from HD and its worst consequences, when we implement a few key actions:
1) Periodic skin camps for all conditions with expert clinicians, and smear microscopy, so that LL cases can be diagnosed even while they display only subtle signs of LL HD.
2) Prolonged anti-microbial protection for LL patients, so that reinfection is stopped and sources of concentrated viable bacilli become unavailable. No child need be exposed to concentrated viable bacilli.
3) Mass multi-drug administration (MDA) at intervals of less than a year. This probably needs to be repeated relentlessly until no child is found with HD during a period of several years. The SHF/WHO project demonstrated a 92% reduction in risk of HD among those who received ROM (rifampicin + ofloxacin + minocycline) compared to those who did not. The use of multi-drugs delays selection of drug-resistant bacilli. Otherwise drug resistance could put HD control out of our reach for decades.
4) A wide social movement to empower excluded people by offering competent care (including protection against reinfection for LL patients), social welfare measures, rehabilitation, education, upskilling, training, creating jobs, opportunities to mingle with people who have never experienced HD, chances to participate in mainstream life, reliable information to the public and legislators, and legal aid to help enforce rights.
The SHF/WHO FSM project also demonstrated an 84% reduction of new cases/year within a short span of only 2 years. It seems wise to learn from what really works, so that our efforts can become more surely and rapidly effective.
Fortunately, the world has some noble-minded philanthropic organisations who are capable of financing exemplary projects in self-settled "HD colonies". There is no reason for delay. These colonies tend to be among the hottest of hyperendemic "hot spots". They also tend to have an elevated incidence rate of extremely painful ENL episodes, owing to enforced anti-microbial neglect of LL patients after 12 months of MDT. All this will change when we remedy the anti-microbial and wider neglect of people who experienced HD. Such remedies can transform self-settled "HD colonies" into powerful examples of success with near zero new cases, near zero new disability, near zero ENL, near zero hunger and near zero neglect.
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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