Leprosy Mailing List – July 30, 2024
Ref.: (LML) Visible deformity after HD (leprosy) chemoprophylaxis among India tribals
From: Joel Almeida, Mumbai, India
Dear Pieter and colleagues,
Jannine Ebenso (ref: (LML) 24 July 2024) enquires whether high MB (multibacillary) HD (leprosy) numbers and high G2D (grade 2 disability / visible deformity) numbers in Dadra Nagar Haveli might be backlog cases. And if Karigiri's successes might be illusory.
The short answer is "No". That is because
The Schieffelin Centre in Karigiri from 1962 to 1997 did repeated surveys: starting with total population (door to door), contact tracing surveys, school surveys etc. (1-4) It was among the world's earliest and largest series of population-based epidemiological studies after the advent of effective chemotherapy. It produced tens of classic papers that advanced our understanding of the epidemiology of HD apart from introducing the world first to large-scale use of dapsone and then to large-scale use of MDT (originally until smear negativity). What Jannine Ebenso apparently became aware of regarding contact tracing and screening in the late 1990s through SAPEL/LEC drives was known to colleagues in Karigiri as early as 1962. The 16% annual decline in new LL (lepromatous) HD demonstrated by Karigiri is real.
Dadra Nagar Haveli (DNH) did door-to-door surveys repeated several times a year. The findings of the meticulous Indian national sample survey of around 2011 (5) are consistent with the repeated DNH surveys. The near-zero G2D (grade 2 disability / visible deformity) among newly detected HD cases in DNH prior to the introduction of SDR PEP / LPEP is real, as is the dramatic increase in G2D / visible deformity after the introduction of SDR PEP / LPEP.
The same national sample survey went systematically door to door in the various states of India, including Maharashtra and Gujarat. Maharashtra had only 8.43 G2D/million population accumulated among newly detected HD patients while Gujarat had only 2.88 G2D/million population similarly accumulated. (5) By contrast, DNH had near zero G2D/million population/year among newly detected HD patients before the introduction of SDR-PEP / LPEP. After SDR-PEP this shot up to 50+/million population/year G2D among newly detected HD patients (6-9).
Further, the foreign investigators in DNH themselves reported a near-zero baseline level of G2D (visible deformity) among newly detected HD patients in DNH prior to the introduction of LPEP / SDR PEP. Their own reports then documented the dramatic increase in G2D among newly detected HD patients in DNH after the introduction of LPEP/SDR PEP. (6-9) Nevertheless, they declared SDR PEP / LPEP to be safe. Some of these same investigators were then shown in Annex 1 of the WHO treatment and prevention guidelines of 2018 as having financial conflicts of interest.
The burden of excess G2D/visible deformity following SDR PEP / LPEP among household contacts, neighbours and social contacts of newly diagnosed HD patients falls disproportionately on HD patients and their families. This infliction of grievous hurt and visible deformity is contrary to their human rights and amounts to a particularly egregious form of discrimination against them. G2D / visible deformity tends to indicate underlying permanent nerve damage. Affected limbs tend to deteriorate steadily: going slowly but relentlessly from repeated painless wounds and infections, to attrition of extremities, to disintegration of extremities and too often to eventual amputation. Visible deformity also tends to evoke extreme social exclusion and extreme destitution. All this among persons who had no symptoms or signs of HD and did nothing wrong apart from being family members or neighbours or social contacts of a newly diagnosed HD patient. Worse, tribals (a particularly vulnerable group with 24% illiteracy) formed a majority of the DNH population.
We are a non-mercenary and noble-minded community dedicated to beating HD, with full respect for the Universal Declaration of Human Rights, the Nuremberg code on human experimentation and all relevant legislations and precedents. We have great talents in endemic countries. Are we against shaking off the yoke of any individuals or organisations who have financial conflicts of interest, and instead setting free the capable professionals in endemic countries to protect the best interests of their own people? Then we can match or exceed the 16%/year decline in incidence rate of LL HD that was achieved by Karigiri even in a low-income population near the equator. Average incomes are still conspicuously low in that area, and reinfection of LL HD patients is no longer prevented after the introduction of fixed duration treatment. Addition of MIP vaccine for highly bacillated patients could well accelerate the decline of new LL HD beyond 16%/year.
Raising funds is not the main reason for fighting HD, but investment too tends to chase good outcomes and epidemiological impact. Seeking first the health and wellbeing of the people we serve is likely to be the surest route to success in every sense.
Thanks to Jannine Ebenso for her comments.
With all sincerity,
Joel Almeida
References
1. Rao PSS, Karat ABA, Kaliaperumal VG.Incidence of leprosy in Gudiyatham Taluk, South India. Indian J. Med.Res. 60 (1972) 97-105.
2. Rao PSS, Karat ABA, Kaliaperumal VG, Karat S.Prevalence of leprosy in Gudiyatham Taluk, South India. Part I. Specific rates with reference to age, sex
and type. Int. J. Lepr. 40 (1972) 157-163.
3. Rao PSS, Karat ABA, Karat S. Epidemiological studies in leprosy in Gudiyatham Taluk. II. Patterns of familial aggregation of leprosy in an endemic area. Lepr. Rev. 40 (1969) 93-98.1. Katoch K, Aggarwal A, Yadav VS, Pandey A. National sample survey to assess the new case disease burden of leprosy in India. Indian Journal of Medical Research, 2017; 146(5): 585-605.
4. Jesudasan K, Bradley D, Smith PG, Christian M. The effect of intervals between surveys on the estimation of incidence rates of leprosy. Lepr Rev (1984) 55, 353-359
5. Katoch K, Aggarwal A, Yadav VS, Pandey A. National sample survey to assess the new case disease burden of leprosy in India. Indian Journal of Medical Research, 2017; 146(5): 585-605.
6. Barth-Jaeggi T, Steinmann P, Mieras L, et al. Leprosy Post-ExposureProphylaxis (LPEP) programme: study protocol for evaluating the feasibility and impact on case detection rates of contact tracing and single dose rifampicin. BMJ Open 2016;6:e013633.doi:10.1136/bmjopen-2016-013633.
7. Mieras L, Singh MK, Manglani PR et al. A single dose of rifampicin to prevent leprosy; quantitative analysis of impact on perception, attitudes and behaviour of persons affected, contacts and community members towards leprosy in India, Nepal and Indonesia. Lepr Rev (2020) 91, 314–327 doi:10.47276/lr.91.4.314
8. Steinmann P, Cavaliero A, Aerts A et al. The Leprosy Post-Exposure Prophylaxis (LPEP) programme: update and interim analysis. Lepr Rev (2018) 89, 102–116
9. Richardus JH, Tiwari A, Barth-Jaeggi T et al. Leprosy post-exposure prophylaxis with single-dose rifampicin (LPEP): an international feasibility programme. Lancet Glob Health. Lancet Glob Health. 2021 Jan;9(1):e81-e90. doi: 10.1016/S2214-109X(20)30396-X.
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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