Validity of programme figures
From: Reddy B. N., Kathmandu, Nepal
Dear all,
Being an Indian my country's programme is close to
my heart. I am bit surprised by the spate of messages expressing
concern about the validity of my country's programme figures. Blame it
on my ignorance I even find it bit amusing too. Of course I am
confused and putting across few comments by way of seeking
enlightenment from those who are closer to Indian programme and are
better informed.
If I understood correctly Indian National leprosy
eradication programme (NLEP) is reporting on the number of leprosy
cases registered with the formal service delivery outlets. Computed as
Point prevalence rate. It does not include cases yet to be detected,
cases detected and treated out side the formal network, cases detected
registered and defaulted. If that were so why doubt the validity of
the NLEP figures. Is NLEP's arithmetic wrong? Of course ways and means
adopted that have contributed to the decline could be debated; so also
utility and relevance of this indicator. But validity? It is a
different ball game if one chooses to use this indicator to measure
leprosy endemicity.
Why do we need valid figures for leprosy service
delivery? How valid, precise and accurate they should be? And for what
purpose? Why we did not fuss over it when millions of cases were on
Indian registers? I think it will be the business as usual whether
India has as on date 200 000 cases or 500 000 cases or even more. I am
wondering as to why so many people are bothered so much about the
figures that affect so little the client (registered patients)
management. "Numbers do not matter" was supposed to have
been said by Dr Pannikar (*). Should we all disagree with him?
What is preventing interested and concerned persons
and or organizations from coming out with figures that are valid and
give feed back to the managers. Differences between reported and
survey figures in Agra are not surprising. (Re-enactment of the same
old story of Sample Survey cum Assessment Units). India is a
free and democratic country and anybody can detect and motivate
patients to take treatment from any part of India. Why do not the
INGOs / NGOs identify true cases and treat them. Who and what is
preventing. After all the money comes from donors for this
purpose of helping patients past, current and future. Comments and
criticism apart I failed to notice any worthwhile solutions that were
putforth. Why my friends from India did not come out with concrete
suggestions that cannot be pushed aside by decision makers?
Leprosy qualifies to be called as a rare disease
(as per the norms set by EU, WHO) even in India and even after
accommodating for validity factor. Running a programme to control a
rare disease at the cost of tax payers money by the government is by
itself an anomaly. One should not expect too much from the state. Its
has its own reasons, priorities and compulsions.
I hope you will agree with me if I say that leprosy was never known
for objectivity. Sentiments, donor funds, survival instincts and
old habits ruled decision making.
I would like to conclude by stating that what is
ideal need not be practical.
With best regards,
Dr B N Reddy.
