Leprosy Mailing List – July 12, 2020
Ref.: (LML) Neglect of previously treated persons & interruption of transmission
From: Joel Almeida, London and Mumbai
Dear Pieter and colleagues,
https://www.facebook.com/Morhan.Nacional/videos/288479592187469/UzpfSTE3NzQxNDA0MjI2NzgzOTY6MzA4MDQzNzM0NTM4MjAyNA/
At about 17 minutes into this conversation of people affected by Hansen's Disease (HD), a participant from India makes a startling claim.
An elderly woman with sequelae of HD survived by seeking alms. It was already a precarious existence. Owing to the lockdown, this person could not go out to seek alms. Without alms and without health care, she died. This was in Bihar, India.
Perhaps all of us need to become more methodical and effective in our efforts to show respect and care for those with sequelae of HD. Especially reaching out to those whose survival has been precarious all along.
Population-based enumeration of people with sequelae of HD would allow us to gauge the extent of need. Then we could ensure better that this person's death was not in vain. We would know of every single person with sequelae of HD at risk of premature death, or starvation, or progressive physical disability, or mental anguish, or exclusion, or reinfection, or ENL episodes, or silent neuritis, or type 1 reaction episodes etc. We could respond more methodically, thoroughly, and effectively. No person would fall through the gaps in our well-intentioned efforts. Sometimes we have prematurely washed them out of our registers and out of our minds.
Caring for persons with sequelae is also very important for interrupting transmission. Otherwise transmission can be maintained by persons with genetically determined anergy who are left unprotected against reinfection (or endogenous relapse). Those events often are difficult to diagnose promptly. Then previously treated persons with unrecognised recurrent disease (1) can serve as sources of astronomical numbers of concentrated viable bacilli.(2) This is usually through no fault of their own. Also, growing evidence suggests that viable bacilli in such unprotected persons keep contributing to ENL episodes, type 1 reaction episodes, painful nerves and worse (3, 4, 5). That unnecessarily aggravates their suffering.
It is worth recalling some words from the powerful preamble to the Universal Declaration of Human Rights:
"Whereas disregard and contempt for human rights have resulted in barbarous acts which have outraged the conscience of mankind..."
Barbarous inaction or inadequate action or mistaken action, too, can outrage the conscience of humankind. That is because of severe consequences for people such as this woman. We could "raise our game" instead. We have the necessary good intentions and motivation. With a more methodical and better informed population-based approach, we could have consistently good outcomes too. No person with sequelae of HD need be neglected.
It would be good to enumerate each person with sequelae, know where they can be reached in order to deliver competent services to them, and make the numbers of such people known loudly and widely. Then we will be better placed to raise sufficient finance, to make robust plans and train personnel sufficiently to ensure that no person with sequelae of HD is exposed to avoidable disease, destitution, or premature death. Our outcomes increasingly will match our good intentions. Interrupting transmission through competent services is demonstrably achievable outside continents with armadillos (6, 7). Ending transmission of a disease is a highly valued prize that yields a stream of future health and financial returns. Even where there are armadillos transmission can be reduced greatly.
Governments can be regarded as the first source of finance for public goods. However, their staff have a long list of competing priorities, including the control of high-prevalence killer diseases. Further, HD-related staff posts too often remain vacant for extended durations. That is why governments can be encouraged to channel more of their HD-related budgets to highly motivated voluntary organisations with competent personnel who are dedicated to ending the suffering, disability and persistent transmission of HD. Voluntary organisations, at least the best of them, strive constantly to "raise their game" and produce steadily improving outcomes. That typically requires specialised skills and services to be taken to the doorstep of people affected by HD. Some responsibilities can be left to government-operated general health services that often are widely distributed. However, some critical interventions in HD require specialised skills to be taken to the affected person's doorstep by skilled and mobile personnel.
Evidence suggests that by ending inadvertent (or deliberate) neglect, especially of persons with genetically determined anergy, we will hasten the end of transmission. We will have closed the critical gap in our defences against the dangerous bacilli. Otherwise, decades from now, we will probably still be wondering why children keep developing HD. This woman's death can help open our eyes (and our minds) to the room for improvement in our policies and practices.
The critical improvement is to end the neglect of previously treated persons who have genetically determined anergy. We are already doing much else well, but our outcomes now depend largely on this.
Joel Almeida
Translations
हेंसन की बीमारी के संचरण को समाप्त करने के लिए हमें उन व्यक्तियों की उपेक्षा को समाप्त करना होगा जो पहले इलाज कर चुके हैं लेकिन आनुवंशिक रूप से बेसिली के लिए प्रतिरक्षा प्रतिक्रिया की कमी है। ऐसे व्यक्तियों में रोग की प्रारंभिक पुनरावृत्ति का निदान करना मुश्किल है। नतीजतन, एक ऐसा उपेक्षित व्यक्ति हर दिन अरबों बैक्टीरिया बहा सकता है। बेसिली के खिलाफ दीर्घकालिक संरक्षण ऐसे व्यक्तियों के लिए आवश्यक है, साथ ही बहिष्कार, विकलांगता और अत्यधिक गरीबी से सुरक्षा भी।
ब्राज़ीलियन मोरान ऑर्गेनाइजेशन की एक ऑनलाइन चर्चा से पता चला है कि हेन्सन की बीमारी की अगली कड़ी वाली महिला की भारत में कोरोनोवायरस महामारी के दौरान भुखमरी के कारण मृत्यु हो गई थी। इस तरह की दुखद घटना फिर कभी नहीं होगी, अगर हम अपनी नीतियों और प्रथाओं में सुधार करेंगे।
A melhoria crítica para acabar com a transmissão da hanseníase é acabar com a negligência de pessoas que foram tratadas anteriormente, mas que têm anergia que é determinada geneticamente. A recorrência da doença nessas pessoas é difícil de diagnosticar prontamente e pode resultar na disseminação de números astronômicos de bacilos viáveis a cada dia. A proteção a longo prazo contra os bacilos é necessária para essas pessoas, juntamente com a proteção contra exclusão, incapacidade e pobreza extrema.
Uma discussão on-line organizada por MORHAN revelou que uma mulher na Índia com sequelas de DH morreu de fome desde o início da endemia do COVID. Nunca mais, se melhorarmos nossas políticas e práticas.
References
1. Almeida J. Recurrence rate among MB patients following RFT. LML 2 June 2019 based onBalagon MF, Cellona RV, dela Cruz E et al. Long-Term Relapse Risk of Multibacillary Leprosy after Completion of 2 Years of Multiple Drug Therapy (WHO-MDT) in Cebu, Philippines. American Journal of Tropical Medicine and Hygiene, 2009; 81, 5: 895-9
2. Davey TF, Rees RJ. The nasal discharge in leprosy: clinical and bacteriological aspects. Lepr Rev. 1974 Jun;45(2):121-34.
3. Save MP, Dighe AR, Natrajan M & Shetty VP. Association of viable Mycobacterium leprae with Type 1 reaction in leprosy. Lepr Rev (2016) 87, 78–92
4. Arora P, Sardana K, Agarwal A, Lavania M. Resistance as a cause for chronic steroid dependent ENL - a novel paradigm with potential implications in management. Lepr Rev (2019) 90, 201– 205
5. Brito MDE F, Ximenes RA, Gallo ME, BÜhrer-SÉkula S. Association between leprosy reactions after treatment and bacterial load evaluated using anti PGL-I serology and bacilloscopy. Rev Soc Bras Med Trop. 2008;41 Suppl 2:67-72.
6. Li HY, Weng XM, Li T et al. Long-Term Effect of Leprosy Control in Two Prefectures of China, 1955-1993. Int J Lepr Other Mycobact Dis. 1995 Jun;63(2):213-221.
7. Tonglet R, Pattyn SR, Nsansi BN et al. The reduction of the leprosy endemicity in northeastern Zaire 1975/1989 J.Eur J Epidemiol. 1990 Dec;6(4):404-6,
LML - S Deepak, B Naafs, S Noto and P Schreuder
LML blog link: http://leprosymailinglist.blogspot.it/
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