Leprosy Mailing List – May 9, 2025
Ref.: (LML) Reconstructive Surgery and Physiotherapy in Leprosy Course. Sulawesi and Ambon, November 7–26, 2024
From: Joel Almeida, Mumbai, India
Dear Pieter and colleagues,
First, congratulations to
Kerstin Beise
Pak Kadri
Ton Schreuders
Wim Theuvenet
for the fascinating report about the kindness and care to some of the least influential people in the world. ref: (LML) Reconstructive Surgery and Physiotherapy in Leprosy Course. Sulawesi and Ambon, November 7–26, 2024.
Those who benefited from the kindness of the team and of the sponsor organization might be counted in scores or hundreds. There is a wider impact. Demonstrating kindness and respect to some of the most vulnerable people is like lighting a candle in the dark. Also, collaboration between persons at the bottom of the heap and professionals with no conflicts of interest sets a good example. This is how beneficial changes are encouraged and enabled.
Why do visible deformities accumulate?
Unfortunately the previous rapid decline in incidence rate of MB (multibacillary) HD (leprosy) has stalled. This was since the shortening of MDT and then the introduction of brief chemoprophylaxis . Prior to 1998 with longer MDT, reinfection of genomically susceptible LL (lepromatous) HD patients was delayed (eg., analysis by Goncalves et al using data from Acre, Brazil; genomic susceptibility data from Sartori et al, Brazil). Consequently, the incidence rate of MB HD had declined rapidly in places such as
Weifang (China)
Karigiri/Gudiyatham Taluk (India)
Karonga (Malawi)
Pakistan
Thailand
Vietnam
Ecuador
First, congratulations to
Kerstin Beise
Pak Kadri
Ton Schreuders
Wim Theuvenet
for the fascinating report about the kindness and care to some of the least influential people in the world. ref: (LML) Reconstructive Surgery and Physiotherapy in Leprosy Course. Sulawesi and Ambon, November 7–26, 2024.
Those who benefited from the kindness of the team and of the sponsor organization might be counted in scores or hundreds. There is a wider impact. Demonstrating kindness and respect to some of the most vulnerable people is like lighting a candle in the dark. Also, collaboration between persons at the bottom of the heap and professionals with no conflicts of interest sets a good example. This is how beneficial changes are encouraged and enabled.
Why do visible deformities accumulate?
Unfortunately the previous rapid decline in incidence rate of MB (multibacillary) HD (leprosy) has stalled. This was since the shortening of MDT and then the introduction of brief chemoprophylaxis . Prior to 1998 with longer MDT, reinfection of genomically susceptible LL (lepromatous) HD patients was delayed (eg., analysis by Goncalves et al using data from Acre, Brazil; genomic susceptibility data from Sartori et al, Brazil). Consequently, the incidence rate of MB HD had declined rapidly in places such as
Weifang (China)
Karigiri/Gudiyatham Taluk (India)
Karonga (Malawi)
Pakistan
Thailand
Vietnam
Ecuador
Remarkably, this sometimes occurred despite woefully low income levels.
Once anti-microbial protection against reinfection of genomically susceptible LL HD patients started to be withdrawn prematurely, the consequences appeared from about 2005 onwards. MDT was shortened to only 12 months in 1998. LL HD patients were left unprotected against reinfection in endemic areas. The earlier rapid decline of MB HD was lost. The introduction of brief chemoprophylaxis from about 2010-2013 onwards was the final blow. Stagnation in incidence rate became firmly entrenched. This is attributable in large part to:
a) Reinfection of LL HD patients in endemic areas
b) Harmful effects of brief chemoprophylaxis (mainly, disruption of safe self-healing & boosted risk of visible deformity, together with delayed diagnosis of LL HD chemoprophylaxis recipients)
Only the physical distancing during COVID reduced transmission temporarily. Socio-economic gains too have helped.
Countries such as Kiribati that succumbed to the policy of brief chemoprophylaxis (since 2018) have experienced stagnation or even increase in the incidence rate of MB HD among children. Children in Kiribati even showed visible deformity at diagnosis, at a rate exceeding 20/million children/yr. That is somewhat higher than 1/million population/year or zero. FS Micronesia avoided brief chemoprophylaxis and in doing so protected its children from similar harm. Wherever brief chemoprophylaxis is condoned, low income people including children are put at elevated risk of visible deformity at diagnosis.
Brazil rejected brief chemoprophylaxis in 2020. Coincidentally, since about 2022 there has been a dramatic increase in the household income of the lowest income states of Brazil, such as Maranhao (near doubling of household income within 3 years). It is attributable to conditional cash transfers (payments to the lowest income families in exchange for immunization, school attendance etc). All this, together with focus on stopping transmission by competent prompt diagnosis of LL HD, is starting to yield world-leading rates of decline in HD in states such as Maranhao.
Once anti-microbial protection against reinfection of genomically susceptible LL HD patients started to be withdrawn prematurely, the consequences appeared from about 2005 onwards. MDT was shortened to only 12 months in 1998. LL HD patients were left unprotected against reinfection in endemic areas. The earlier rapid decline of MB HD was lost. The introduction of brief chemoprophylaxis from about 2010-2013 onwards was the final blow. Stagnation in incidence rate became firmly entrenched. This is attributable in large part to:
a) Reinfection of LL HD patients in endemic areas
b) Harmful effects of brief chemoprophylaxis (mainly, disruption of safe self-healing & boosted risk of visible deformity, together with delayed diagnosis of LL HD chemoprophylaxis recipients)
Only the physical distancing during COVID reduced transmission temporarily. Socio-economic gains too have helped.
Countries such as Kiribati that succumbed to the policy of brief chemoprophylaxis (since 2018) have experienced stagnation or even increase in the incidence rate of MB HD among children. Children in Kiribati even showed visible deformity at diagnosis, at a rate exceeding 20/million children/yr. That is somewhat higher than 1/million population/year or zero. FS Micronesia avoided brief chemoprophylaxis and in doing so protected its children from similar harm. Wherever brief chemoprophylaxis is condoned, low income people including children are put at elevated risk of visible deformity at diagnosis.
Brazil rejected brief chemoprophylaxis in 2020. Coincidentally, since about 2022 there has been a dramatic increase in the household income of the lowest income states of Brazil, such as Maranhao (near doubling of household income within 3 years). It is attributable to conditional cash transfers (payments to the lowest income families in exchange for immunization, school attendance etc). All this, together with focus on stopping transmission by competent prompt diagnosis of LL HD, is starting to yield world-leading rates of decline in HD in states such as Maranhao.
Epidemiologically, the basic reproductive number of LL HD (R0) drives the endemic. How many secondary LL HD cases are produced by one primary LL HD case? That is the core of the epidemiology of HD. Only in the southern USA do armadillos form the main primary cases. Otherwise it is largely unprotected LL HD cases who maintain transmission. If LL HD patients before or after treatment remain unprotected, other efforts to reduce transmission are like band-aid solutions. As long as the metaphorical "wound" of unprotected LL HD patients is neglected, bacilli spread.
What is needed for rapid decline of HD everywhere?
1) Stop brief chemoprophylaxis (it is demonstrably and seriously harmful)
2) Promptly diagnose every LL HD patient and ensure prolonged anti-microbial protection for them in endemic areas (eg., using nasal smear bacilloscopy or LAMP based on RLEP).
3) Care for persons with lived experience of HD and their family members, including by regular monitoring of nerve function and prompt anti-inflammatory treatment, alongside comprehensive psycho-socio-economic support.
What is needed for rapid decline of HD everywhere?
1) Stop brief chemoprophylaxis (it is demonstrably and seriously harmful)
2) Promptly diagnose every LL HD patient and ensure prolonged anti-microbial protection for them in endemic areas (eg., using nasal smear bacilloscopy or LAMP based on RLEP).
3) Care for persons with lived experience of HD and their family members, including by regular monitoring of nerve function and prompt anti-inflammatory treatment, alongside comprehensive psycho-socio-economic support.
4) Care for low income people in endemic areas by creating jobs, remedying under-nutrition (providing supplements such as vit D where needed), improving schooling etc. It is in the self-interest of affluent countries to develop markets for their products and create reasons for people to make a good life in their countries of origin. That is why the International Development Association replenishment was successful.
Every person who develops signs of HD should find a basic level of competent treatment, monitoring and care at their local health facility. Along with basic treatment and care for the most impactful other diseases, plus education on healthy living. HD control through wider access to improved basic health care, backed by telemedicine expertise and travelling surgeons/physiotherapists/rehab/income generation experts.
It may be temporarily profitable for some organizations and individuals to promote harmful interventions such as brief chemoprophylaxis. The growth and spread of knowledge relentlessly makes harmful interventions unprofitable. The history of HD has too often been one of harmful interventions dressed up as beneficial to the wider population. By contrast, the spread of effective and sufficiently prolonged anti-microbial treatment across endemic areas was a triumph, a bright light in the darkness.
Organizations that demonstrate kindness and respect for human rights deserve boosted support. Leprazending is a good example. May the most vulnerable people always be enabled to walk hand in hand with kind friends in high places. Hats off to the colleagues and friends who demonstrated kindness and expertise in Sulawesi and Ambon.
With all sincerity,
Joel Almeida
Every person who develops signs of HD should find a basic level of competent treatment, monitoring and care at their local health facility. Along with basic treatment and care for the most impactful other diseases, plus education on healthy living. HD control through wider access to improved basic health care, backed by telemedicine expertise and travelling surgeons/physiotherapists/rehab/income generation experts.
It may be temporarily profitable for some organizations and individuals to promote harmful interventions such as brief chemoprophylaxis. The growth and spread of knowledge relentlessly makes harmful interventions unprofitable. The history of HD has too often been one of harmful interventions dressed up as beneficial to the wider population. By contrast, the spread of effective and sufficiently prolonged anti-microbial treatment across endemic areas was a triumph, a bright light in the darkness.
Organizations that demonstrate kindness and respect for human rights deserve boosted support. Leprazending is a good example. May the most vulnerable people always be enabled to walk hand in hand with kind friends in high places. Hats off to the colleagues and friends who demonstrated kindness and expertise in Sulawesi and Ambon.
With all sincerity,
Joel Almeida
References
2. Sci Rep 2020 Jan 28;10(1):1284. doi: 10.1038/s41598-020-58079-3
3. Indian J Lepr, Visible deformity after chemoprophylaxis. forthcoming [2025]
____________________________________________________________________________
LML - S Deepak, B Naafs, S Noto and P Schreuder
LML blog link: http://leprosymailinglist.blogspot.it/
Contact: Dr Pieter Schreuder << edit...@gmail.com
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