Leprosy Mailing List – November 18, 2019
Ref.: (LML) Is the use of an eponym for leprosy inappropriate?
From: Joel Almeida, London and Mumbai
Dear Pieter & colleagues,
Dr. Butlin (LML 15 Nov 2019) shone a spotlight on a violation of ethics, human rights and criminal law, by Armauer Hansen (AH). Use of demonstrably or potentially harmful interventions in humans is proscribed by law. Currently anyone subjected to a demonstrably harmful intervention, especially without full informed consent, can approach the court for remedies. Civil society organisations increasingly assist persons who have experienced HD, so that their rights are protected and compensation paid when ordered by a court, or in out-of-court settlements. AH's experience therefore has current relevance. We are a compassionate community, so we place a high value on respect for human rights, ethics, and avoiding negligence. Even if we were not so compassionate, it would be wise for us to prefer the right thing to the merely expedient thing. That's why the evidence from randomised controlled trials is important even when it happens to be inconvenient.
However, Dr. Butlin after highlighting the violation by AH, then suggested, "There might be no objection to incorporating the name Hansen into the name of the bacteria which cause leprosy, since Armauer Hansen was the discoverer of this bacterium." Once that is accepted, it is a small step to naming the disease after the causative organism (Hansen's bacilli). Even Dr. Butlin might therefore find Hansen's Disease or hanseniasis an unobjectionable label (derived from the causative organism, as in brucellosis.)
HD is nowhere described as "a state of corruption or decay". By contrast, a google search for "definition of leprosy" provides a rude shock. That definition is part of the English language, for better or worse. Languages are evolved by common usage rather than by central diktat. Similar difficulties might arise in other languages. Unsurprisingly, people who have experienced the disease prefer to use the label "Hansen's Disease". Most of them might never have heard of AH or the highly regrettable episode highlighted. I would not like to be told that I have been diagnosed with "a state of corruption and decay", when I have only HD.
Dr. Butlin also suggests using a name linked to the pathology. This could be helpful to patients. The late great Dr. Fritschi, of the Schieffelin centre, Karigiri (India), made a distinction between self-limting and progressive forms of HD. He considered that these were two distinct pathological processes with distinct prognoses and distinct public health implications. Such distinction in terminology is a well established concept in the case of growths. They are widely described as "benign" or "malignant". Nobody fears benign growths because they are not "cancer". There is no reason for anyone to fear self-limiting infections with Hansen's bacillus. These generally have an excellent prognosis with or without specific treatment, and are usually non-infectious even without treatment.
In Yakusu/Sombe near Kisangani, DRC, lay people have long been able to distinguish between "bad" HD and self-limiting skin lesions. The late great Dr. Stanley Browne wrote, "The skin lesions of active leprosy carried no stigma, but ulcerating extremities were feared because they were thought to be contagious. The older people were very skilled in differentiating leprosy from other conditions, especially fungaI infections. They could also readily distinguish pre-tuberculoid skin lesions from the scarcely visible prelepromatous macules, which they called "the mother of the bad leprosy". (1)
Dr. Fritschi instructed patients with a single, small, well-defined (and probably self-limiting) anaesthetic patch to use a neutral label for their condition. I recall he advised using some suitable jargon, such as maculo-anaesthetic dermatosis (it was some time ago and my recollection of the details is inexact). His approach allowed many patients to preserve their jobs, marriages, educations etc. Incidentally, the Schieffelin centre in Karigiri was one of the world's leading population-based HD control programmes, with meticulous contact tracing and record-keeping. As a result, many people were diagnosed with a single well-defined smear-negative anaesthetic patch, BI zero, and no other clinical signs of disease. If they went to Dr. Fritschi, they emerged with a neutral label.
Other forms of the disease are unfortunately not yet harmless in some endemic countries, even after diagnosis. In an ideal world every HD patient would receive competent case management. Anti-microbial protection would be adequately prolonged for patients with LL disease, nerve function would be monitored at least every 3 months using graded monofilaments, prednisolone would be used when needed, pain would be managed well, thalidomide or its substitutes would be provided promptly and safely, irreversible physical damage would be repaired competently, psychological scars would be tended, reconstruction and rehabilitation would be effective, access to social security would be assured, legal redress for wrongs would be swift, and HD would be considered a largely harmless disease. In the real world, HD continues to damage people unnecessarily even after they are diagnosed. This keeps fear alive. In these circumstances, those with a single self-limiting anaesthetic patch and no other signs of disease might prefer a neutral label. Even the relatively non-stigmatising "HD" could be reserved for the "bad" forms of the disease that are unlikely to self-heal. The best solution, of course, is to actually implement all that we know to be good and important. That is our shared dream. Then all forms of HD will become truly harmless, and we will even end HD.
What are the thoughts of the persons among us who have experienced any form of HD? Does the Fritschi approach of neutral jargon offer any advantages? Is there concern about wrongly honouring a person (AH) who violated the law and civilised norms? What thoughts and reflections arise?
Joel Almeida
Reference
1. Browne SG. Self-healing Leprosy: Report on 2749 Patients. Lepr. Rev. ( 1974), 45, 104- 111.
LML - S Deepak, B Naafs, S Noto and P Schreuder
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