Please Include DMD in 2011 census

To: Home Minister of India


Honorable Shri. P. Chidambaram

The Home Minister of India

Ministry of Home Affairs

North Block

Central Secretariat

New Delhi -110001

Phone: 23092011, 23092161

Fax: 23093750, 23092763

Respected Sir,

Subject: Pleading to include Muscular Dystrophy as one of the types of disability in the Census 2011 questionnaire.

This representation is being made on behalf of hundreds and thousands of Muscular Dystrophy patients and parents in India. Muscular Dystrophy community in India remains marginalized and unheard even within the disability population for want of awareness and lack of an official data with the government/s and as well as civil society organizations. An empirical data gathered by Muscular Dystrophy Associations world wide mentions the occurrence of Muscular Dystrophy to be one in every 2000 children population; neither India nor any of its states has any data about it. However, on the same scale of 1:2000, if not more for the poor living conditions and lack of awareness, one could well imagine what could be the number of Muscular Dystrophy children in India with its 1.2 billion populations.

While the Duchenne Muscular Dystrophy (DMD) Children in developed countries could live up to 23-28 years of age, most often the DMD children in India die during 13-17. None of the clinical trials being in progress globally prefer to recruit patients from India.This could well be attributed to lack of official recognition to the disease along with many other reasons. As parents of muscular dystrophy patients, we are genuinely afraid that the absence of an official data on muscular dystrophy might constraint our access to cure that is to come in the near future. The forthcoming population census would be the best opportunity to enumerate muscular dystrophy patients since it would also provide the scope for correlating and analyzing the socio-economic conditions of the muscular dystrophy patients in India.

It is therefore, we hereby request the honorable minister to include Muscular Dystrophy as one of the types of disability listed within the questionnaire which is to be used for the population census commencing on 9th February, 2011.

This would surely help not only enumerating the Muscular Dystrophy Patients in India, but also provide a scope for accessing cure that is to come soon. Failing to include Muscular Dystrophy in the Census 2011 would make us wait for another 10 years until the next census and by the time we would have lost many children.

Hope the honorable minister would kindly appreciate our request and provide suitable orders to include Muscular Dystrophy as one of the types of disability in the forthcoming census 2011.

Look forward to your kind support and favorable actions in this regard.


No comments:

Post a Comment