Leprosy mailing
list – March 13th, 2005
Ccn:
all.
Ref.: Whither, “World Without Leprosy”?
From:
R Ganapati, V V Pai,
Bombay, India.
Dear Dr Noto,
Please permit
us to make some more observations (arising from our combined
experience of over 60 years in leprosy relief work) particularly
relevant to
India
, which contributes 77% of active cases to the global pool of active
leprosy case. One to 1.5 million out of 2 to 3 million
leprosy-disabled in the world are reported to live in
India
.
Dr Yo Yuasa,
who was the President of the International Leprosy Association for two
terms, exhorted everyone to work towards a “World Without
Leprosy” at the International Leprosy Congress,
Beijing
in 1998. He defined this state as “A world without leprosy-related
problems, both medical and social, emphasizing the point that it is
not the disease per se but its
related problems, mostly
social but some medical, which require attention”.
This slogan
was however, pooh-poohed by WHO and the WHO- influenced governments
and the “program managers”, who were obsessed with the term
“Elimination”. The target year was 2000, which is now revised to
2005, when the mean prevalence rate of 1 case per 10,000 is expected
to be reached. Unfortunately by then, the world will also be free from
the so called “Leprologists”. The enormous funds still needed
to do justice to the clinical problems related to leprosy and the
rehabilitation of patients would
have dried up. The “pool” of leprosy patients with reaction,
neuritis and its sequelae and those needing rehabilitation
contributing to the “disease burden” in the community will far out
number the active cases needing MDT. As yet there is no evidence of
the much- talked about secondary level and tertiary level “Referral
Centers” easily accessible to patients living in areas deprived
of even basic health services, where the primary health centers with
which leprosy is “integrated”. Most patients and the health
providers are not even aware of the technology known to mankind to
prevent the adverse progression of complications and palliative care
of irreversible disabilities, let alone the concept of
“Community-Based Rehabilitation”.
It is strange
that the same public health specialists who talk about
“Elimination” have now started fighting for “Human Rights” of leprosy
patients without even attempting to formulate a mass-based strategy
for addressing the clinical problems of patients “released from
control”. Perhaps they are waiting to celebrate the eventful day of
31 December 2005 to announce their “Victory over Leprosy” before
thinking of planning the secondary and tertiary level referral
centers! It is time that the people, patients and particularly the donors are
made aware that this victory is by no means a victory over all
leprosy-related problems, as enshrined in the definition of “World
Without Leprosy”. The donors are made to believe that with the magic
word of “Elimination”, the disease is already at the verge of
being wiped out.
Has not the
jargon “Elimination” of Leprosy outlived its utility? Though it is
rather late, should we not eliminate this word and devise a more
patient-friendly term that truly reflects the sincere attempt at the
eradication of all ills afflicting the persons who have contracted
specially the progressive forms of the disease for no fault on their
part.
Yours truly,
Dr R Ganapati,
Dr
VV Pai,
Bombay
Leprosy Project
VIDNYAN BHAVAN, 11 V.N. PURAV MARG, SION-CHUNABHATTI,
MUMBAI 400 022,
INDIA
Telephones: 091-22-2522 06
08 / 2522 30 40;
Cell Phone: 98213 10131
Fax: 091-22-2529 6486,
E-mail: blproject@vsnl.net / bomlep@bom5.vsnl.net.in
Web-page: http://www.bomlep.org
