Thursday 30 June 2011

Incurable disease info sought in 20 days

The state information commissioner has directed the public information officer to provide a list of incurable diseases and, in particular, specific information about sickle cell disease to the city-basedSickle Cell Society of India (SCSI) within 20 days after discussing the issue with the health department, Directorate of Medical Education and Research (DMER) and the dean of Grant Medical College and JJ Hospital too. 

President of the society, Sampat Ramteke has been trying to get the information from DMER through an RTI application which deflected the question to the information officer of the health department. When no reply was given by either of the departments, he sought the help of the information commissioner. 

"DMER did not answer the questions claiming they did not have the relevant information. They are the people who regularize the content of medical education in the state. If they don't know all this, how are they going to teach the students," asked Ramteke. 

He approached the commissioner as the health department also did not reply even after two months of the date of receiving the application. After hearing the complaints and explanations from both sides, state information commissioner PW Patil declared that the issue should be given priority as it concerns the health of the common man. He also said that the information sought by the organization be provided within 20 days of receiving the order by the respective departments. 

The information being sought included the meaning and definition of incurable diseases, a list of diseases that can be grouped as incurable, and the authority issuing certification to people with such diseases. Several questions are also raised about sickle cell disease like whether it is a genetic blood disorder, its ill effects, the average lifespan of an affected person and the expenses of living a quality life after being affected by it. 

"Several provisions have been made by the government for those afflicted by blood disorders, including financial benefits. The answers we get would make it clear whether SCD affected people can avail of them, too. It is very important as most people who get this disease belong to the economically weaker section of the society," explained Ramteke.

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