"The Poorest Of The Poor" Defined

I am honored to be able to do volunteer work for the Leprosy Mission where I am Ambassador to the Ethnic Communities. The concept for the role is that the immigrants from the countries where the Leprosy Mission work e.g. Bangladesh/India/China/Ethiopia/PNG have a world of experience of the life, needs, mores etc of those countries. They could provide hugely valuable input into the planning stages of TLM's projects and when returning to their country of origin on a visit could see the projects and report back as to how our work could be improved.


The other aspect, which has been an aid in getting government support, is that through this interaction the immigrant community feel they are part of the wider community through the outreach and it is considered a valuable aspect of the integrative flow. TLM is perhaps unique amongst NGO's in having this two way flow of interaction.


Working with the Leprosy Mission I am of course acutely aware of the terrible suffering of the afflicted. Not only the physical trauma but the psychological trauma of discrimination and outright fear they are subject to. Much of the work of TLM is in counselling and community education.


I believe that the leprosy afflicted meet the definition of  "the poorest of the poor" and this communication, which appeared in The Leprosy Journal set s out the reason for this belief. Surely the people who have been so terribly  affected by the civil war and drought in Darfur, Sudan must be considered at life's very bottom as far as suffering humanity is concerned. But there is a level even below that level of suffering. 


As the  cases describe people afflicted with leprosy were denied entry in to the Internally Displaced Persons camps and "systematically excluded for humanitarian assistance". Not only was that morally wrong, totally needless, as leprosy is easily curable and almost instantly made non-transmissible ( it is extremely difficult to get the disease even from a person who has it as the overwhelming majority of people are naturally resistant to it) but against the U.N. Charter.


Thus the leprosy affected meet the definition of "the poorest of the poor"

Letter to the Editor

DISCRIMINATION AGAINST LEPROSY PATIENTS AND THEIR FAMILIES:

THE SITUATION (EARLY 2005) IN WEST DARFUR, SUDAN

Sudan (population 33·5 million) has suffered civil war and disruption for the past 21 years. Conflict in

the Darfur region in the West of Sudan, bordering Chad, has displaced 1·5 million and resulted in the

deaths of tens of thousands of people.

1,2

Many have been forced out of their traditional areas into make-

shift situations with limited supplies of water and food, together with difficulties in accessing help from

government and non-government agencies.

Following a preliminary baseline report for The Leprosy Mission Sudan on a leprosy village called

Ashara Biyuut (literally Ten Houses), near Geneina, West Darfur,

3

we recently interviewed a random

sample of 51 ‘heads of household’ in the same village, 16 of whom had been rejected (refused

admission) to the Internally Displaced Person (IDP) camps set up in their area by various agencies. They

were thus systematically excluded from any humanitarian intervention or help which might have been

available at the time, on the basis of their being affected by leprosy. The following are typical statements

from six different patients interviewed:

1. “I was living in Mastra. I was diagnosed and treated for leprosy at the age of 12 years old. Though I

was rejected by my relatives I continued there until the war started. I left the village to the IDP

camp but unfortunately I wasn’t allowed into the camp because I was a leprosy affected person and

was advised to go to the leprosy village.”

2. “I was living in Koranga, but I left my village to go to Koranga IDP camp because of the war, but

unfortunately I have been rejected by the camp’s authority; because I’m a leper, that is why I have

come to the leprosy village where I feel accepted among my brothers and sisters.”

3. “I came here because of the war from Sarva to Abu Isar IDP camp. But I was not allowed into the

camp; for they said I’m a leper, therefore I decided to come to brothers and sisters in the leprosy

village.”

4. “The national Camps authority told me to go away from here to the leprosy village for it is your

place not here; that is why I have come to the leprosy village.”

5. “The health worker has chased me away from the camp.”

6. “I’m begging to support my family because I don’t have any alternative.”

In talking to other leprosy patients and our colleagues in relief work in this area, we have heard of

many further examples of outright discrimination against patients or ex-patients on the grounds of their

disease, thus leading to additional psychological and physical suffering in an already disadvantaged

section of the community.

The number of patients in this preliminary study is obviously small, and we acknowledge that their

health problems have to be assessed in the context of many others, including tuberculosis, malaria,

HIV/AIDS and chronic malnutrition. Their experiences, however, seem to amount to a violation of the

Geneva Convention on the Protection of Civilian Persons in Time of War and many recent statements

and publications on the need for egalitarian and humanitarian treatment for all patients with this

disease.

4– 6

Lepr Rev (2006) 77, 82–83

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