Leprosy Mailing List – February 23, 2014
Ref.: LML) Hazards of setting targets to eliminate disease: lessons from the leprosy elimination campaign
From: Grace Warren, Sidney, Australia
Dear Pieter,
Thank you for publishing all these letters. It is very interesting to note the various comments, and opinions, especially in view of the facts that I personally have seen how different countries have interpreted and put into action the various WHO statements.
Yes I will agree that the WHO aim to eliminate leprosy has certainly resulted in a big increase in attempt to find and treat the disease and the numbers of new cases diagnosed each year in the last decade has decreased. One big problem now is that some countries which are said to have eliminated leprosy now no longer give the grants to help doing surveys and to run clinics. Having worked in many Asian countries doing leprosy for over 50 years I know the differences that have occurred in many areas. I also appreciate that many countries did not give realistic figures of the numbers of leprosy. This was a real problem in the middle of last century as it was considered a disgrace to have a high incidence of leprosy. One country I know of gave the number admitted to the Government hospital as the official number for the country and did not include the hundreds( and there were) of patients who were being treated by NGOs in small clinics scattered round the country.
But a major effect today , is that the Medical Colleges in many countries are reducing the amount of teaching that they are giving on Leprosy and many of the younger doctors have little idea now of what leprosy really is and of what to do to look for leprosy and to diagnose it and even more to treat it effectively. I am really concerned when I am told in some places that" there is no leprosy in this country". And it is often mirrored by the attitude of the doctors who do not consider it a possibility - What one does not look for, or think about one will never find.
Combined with this is the WHO statement that a patient to be diagnosed as leprosy must have " a skin patch or patches with a definite loss of sensation and has not completed a full course of treatment with multidrug therapy" (first edition of the WHO Booklet "A guide to Eliminate Leprosy as a public health problem", 2000) Yes it adds that " other signs include: reddish or skin coloured nodules or smooth, shiny diffuse thickening of the skin without loss of sensation”. These statements virtually eliminate diagnosis of leprosy in Indeterminate leprosy which has no sensory loss and although the diffused thickening of the skin is common in some skin colours it is often NOT shiny and can often only be appreciated by palpation and there are no edges and no alteration in sensory perception.
I was fascinated when I first encountered, back in the 1980s, Persistent Primary Neuritic Leprosy in S E Asia, where it certainly is not uncommon. More recently in about 2002 I was visiting a centre where a new program was being set up and was asked to examine some problem patients and how to manage them? One of them was a young man with a clawed hand. He had no other complaints, no skin lesions and the WHO consultant who had visited a few weeks earlier had said he did not have leprosy. However the man came from an area where leprosy was common so they referred him to me. On careful examination he had a very definite and enlarged very firm ulna nerve at the elbow and on the hand as well as firm easily felt radial nerves on the back of the affected hand and some alteration in sensory perception - mostly mis-reference. I could not find any other large nerves and no skin lesions but am sure he was leprosy. I have seen many of these in SE Asia who if seen early, soon after the paralysis starts, can be completely reversed by MDT and 3 months of carefully controlled steroids with treatment of any other metabolic problems that may be playing a part in the process.
Another teenager was brought to me because he has unusual lumps on neck and groin. These were obviously lymph nodes. Checking his past history was very interesting as he had been recently discharged from an psychiatric hospital where he had been confined for several years because he complained of funny feelings in the Index and adjacent finger of the right hand. When I checked the hand the radial and ulna nerves were very large and firm but it was very hard to determine the size of the median ( it often is) . He had definite areas of sensory abnormality with some complete anaesthesia and mis-reference, but fortunately no paralysis. I biopsied one lymph node from the neck (he would not let me touch the one in the groin as he was afraid it may affect his bike riding !). The well experienced pathologist, to which it was sent, was thrilled to receive such a definite leprosy affected lymph node and in his mind that was the complete cause of the problem.
I am afraid Indeterminate leprosy often gets excluded. I wonder how many have been diagnosed later with full blown leprosy- we will never know. And I have seen a goodly number of diffuse lepromatosis with large areas of palpably infiltrated skin that does not appear affected and to which there is no definite edge - but slit skin smears give the answer. Unfortunately the places where reliable slit skin smear reporting occurs is getting harder to find and so this method of confirmation is not so easy these days. Back in the 1960/70s many of our Chinese patients were diagnosed because they had positive slit skin smears with very few other signs.
Leprosy is certainly a fascinating disease to have treated for so long. I suspect that it will remain around for quite a time yet and could well flare up again if the current trainees and medical officers consider it is gone and so do not even consider it as a possibility, and do not look for it. Well publication of the increases in annual diagnosis is good. Is there somehow that we can remind people that it is still present and needs to be looked for. The WHO statement was " "Eliminate leprosy as a Public health problem", not complete elimination!
Congratulations on sharing every ones experiences so we can all help each other.
Yours sincerely,
Grace Warren.
was MS Hong Kong Leprosarium 1960-1975 and Adviser in leprosy and reconstructive surgery for the Leprosy Mission in Asia from 1975-1995, still doing consulting at present
LML - S Deepak, B Naafs, S Noto and P Schreuder
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