Leprosy Mailing List – January 16, 2022
Ref.: (LML) Median nerve damage in leprosy
From: Joel Almeida, London and Mumbai
Dear Pieter & colleagues,
Esteemed colleagues have made important points about protecting HD patients adequately. Those who monitor nerve function regularly set a good example (e.g. the Brazilian national program, Fondation Raoul Follereau personnel, others). Respect for patients prompts adequate medical care, and wider care.
It may be helpful to imagine a patient as a family member walking a tightrope from disease to healing. If they fall off that tightrope, they will suffer irreversible damage. We need to provide adequate safety nets. What are the safety nets we would provide to a family member?
1) Antimicrobial protection with uninterrupted MDT. If they have LL (lepromatous) HD and live in an endemic area, then they would benefit also from post-treatment prophylaxis to protect them against reinfection. This can be with MDT or with combinations of 3 bactericidal drugs. MIP vaccine often yields rapid clearance of bacilli in even LL patients, making it useful.
2) Nerve function monitoring & prompt intervention when required
A pilot survey in two rural communities in India revealed that 15% to 33% of persons who previously received MDT had visible deformity (1). Fewer than 5% of patients in that Indian state had visible deformity at diagnosis. Evidently, most visible deformity in that state arose during or after MDT. A total-population survey among over 100,000 persons in a rural area 100 km from Mumbai (India) revealed a prevalence of visible deformity among previously treated patients of 2308 per million population (2). This suggests that several million people are living with visible deformities that developed during or after MDT treatment.
A randomized double-blind clinical trial among persons with mild and recent sensory impairment compared prednisolone, given for 4 months, with placebo.(3) The placebo group had a 158% higher risk of deterioration in sensory scores between the start and end of treatment. Prednisolone works.
In South Asia, 85% of nerve damage during MDT was found to be "silent", without signs or symptoms of reaction (4). Even the patients did not suspect anything until they suffered irreversible damage. MB patients showed a greatly multiplied risk of nerve damage compared to PB patients. Therefore, assessment of nerve function in MB patients (correctly classified) needs to be done at diagnosis and at least every quarter thereafter. This needs to continue for 2 years after the start of MDT. Otherwise, patients who newly develop sensory impairment are left without timely prednisolone treatment, allowing permanent nerve damage. That in turn leads to visible deformity, with all its adverse consequences.
Specially trained and skilled health workers provided with transport and covering a wide geographical area have been used for monitoring nerve function in well-run programs (including in exemplary sub-districts of India). NGOs such as Fondation Raoul Follereau, who monitor nerve function regularly and intervene with prednisolone promptly, are showing respect for patients.
3) Surgical intervention if patients fall through the safety nets 1) and 2) above.
All the above are what one would do for one's mother or child (or indeed one might require for oneself if afflicted by HD). HD patients, like others, are entitled to adequate medical care according to the Universal Declaration of Human Rights, article 25. We can keep removing patients from registers and assuring them that they are healed. However, they might not believe us when they are left with visible deformity despite having started MDT without deformity.
In 2022 we can improve the quality of care for patients after diagnosis, especially by ensuring
A) Uninterrupted MDT for all, plus post-treatment prophylaxis for LL HD patients in endemic areas
B) Quarterly nerve function monitoring, especially for MB patients during the first 2 years after the start of MDT, with prompt prednisolone treatment at the first sign of sensory loss.
C) Availability of surgical interventions for patients who fall through the safety nets above
For millennia people with HD have been neglected as if they do not matter, as if they are sub-human in some way or blameworthy. This neglect and ostracism often deprive them of normal relationships, schooling, housing, utilities, income, etc. Denial of adequate medical care need not be added to their deprivations. It seems more humane to monitor nerve function every quarter, as done in the Brazilian national program, and to intervene promptly with prednisolone when required.
Best,
Joel Almeida
References
1) Aggarwal A, Pandey A. Inverse sampling to study disease burden of leprosy. Indian J Med Res 132, October 2010, pp 438-441.
2) Ganapati R, Pai VV, Tripathi A. Can primary health centres offer care to the leprosy disabled after integration with general health services? - a study in rural India. Lepr Rev 2008, 79:340–341
3) Van Brakel WH1, Anderson AM, Withington SG, Croft RP, Nicholls PG, Richardus JH, Smith WC. The prognostic importance of detecting mild sensory impairment in leprosy: a randomized controlled trial (TRIPOD 2). Lepr Rev. 2003 Dec;74(4):300-10.
4) Croft RP, Nicholls PG, Richardus JH, Smith WC. Incidence rates of acute nerve function impairment in leprosy: a prospective cohort analysis after 24 months (The Bangladesh Acute Nerve Damage Study). Lepr Rev. 2000 Mar;71(1):18-33.
LML - S Deepak, B Naafs, S Noto and P Schreuder
LML blog link: http://leprosymailinglist.blogspot.it/
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