Nippon Foundation stops funding WHO initiative on surveillance of drug resistance in leprosy

Leprosy Mailing List – December 31^st, 2010

Ref.:   Nippon Foundation stops funding WHO initiative on surveillance of drug resistance in leprosy 

From: Narasimha Rao P., Hyderabad, India

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Dear Salvatore,

The message from Dr Pannikar (LML 5th Dec. 2010) informing about Nippon foundation deciding not to continue to fund the WHO initiative on surveillance of drug resistance in leprosy (which I gathered form the correspondence on this issue) is definitely a set back in fight against leprosy.  But it would be relevant to analyze the reasons for such a decision by the very consistent and generous funding agency.

Only reason I can think of immediately is the shrinking numbers of leprosy being reported widely all over the world, especially India.  As any programme donor or manager takes in to consideration the number of beneficiaries, (which is the number of patients in this case / prevalence rate), the less numbers of leprosy patients projected  in world leprosy statistics, makes it less attractive to fund the programme.

However, there are good numbers of missing leprosy patients from NLEP/govt of India registers, which influence world leprosy figures greatly.  It is a fact that numbers of leprosy reported from India by government/NGO leprosy agencies do not take into consideration a significant group of leprosy patients seen and treated by Dermatologists all over India as these patients are not enrolled/registered  in government/NLEP registers.  And there are more than 9,000 actively practicing dermatologist all over India as of now.

Just to estimate on how big this missing number could be,…I have  conducted a email questionnaire, in year 2007, on how may leprosy patients a popular dermatologist sees per year.  E-mails were sent to about 120 dermatologists all over India.  Responses were obtained for the request from 26 Dermatologists all over India in a 4-week period. The 26 responders were from 7 different states (Andhra Pradesh, Tamil Nadu, Karnataka, West Bengal, Gujarat, Rajasthan and New Delhi).  Of these 10 Dermatologists have, both hospital practice and private practice.  Only one of the responders had a full time hospital attachment.  Rest of the 15 were full time private practitioners.  The approximate number of leprosy patients seen by 26 Dermatologists in one year is given in the table below:

	At hospitals	At clinics	Total	Average
New patients	1169	466	1635	62.8
Partially treated patients	464	95	559	21.5
Old patients with disabilities	226	117	343	13.1

The average number of new leprosy patients seen by Dermatologists under study per year was 62.  This is a approximate figure.  Considering that only 6000 (of 9000) dermatologists are in private practice, even if we consider 10 new leprosy cases per dermatologist per year, the number would be 60,000 unregistered cases.  This could be a conservative estimate.  In an endemic areas the numbers could be more as patients going to primary care physician and other specialists (neurologist orthopedician) are not taken into consideration at all.  

Significance of these observations: Although the number of Dermatologists included in this study does not meet the sample size requirements, the results of the study cannot be ignored.  The direct result of these missing numbers could  be...

1. Inability for the Government and leprosy agencies to assess the exact number of leprosy patient load in a community, which leads to improper planning and budgeting for leprosy;
2. which could lead to an inadequate availability of resources (men and material and even MDT blister packs) where and when required;
3. finally, it leads to improper planning and inability to convince and attract donors about the seriousness of the requirements and problem of leprosy.  

I being a dermatologist my self and involved in leprosy, can vouch that most dermatologists can diagnose leprosy and administer WHO MDT very well and correctly.  But I am not sure that they are very good managers of reactions of leprosy, nerve damage and its prevention, ulcer care or management of disabilities of leprosy. Hence, there continues to be a need for an agency or programme to manage these requirements which I presume only NLEP or WHO leprosy programme is capable of.  With funds drying up, as reported by Dr Pannikar, I foresee a very bleak future for care of leprosy patient’s problems in near future, even from these agencies.  

I also take this opportunity to appeal to all who matter, not to emphasize on bringing down the numbers of leprosy and equate it to success of the programme; which I am sure has resulted in migration of so many patients to private dermatologists for the want of care and therapy.

With best regards,

P. Narasimha Rao MD., PhD.