The Rights of Persons with Disabilities (RPWD) Bill 2011 has included two blood disorders of thalassaemia and haemophilia in the list of disabilities along with 15 other diseases. Ironically, sickle cell disease (SCD), the biggest blood disorder prevalent in country with as many as 10 lakh patients, has been left out.
President of Sickle Cell Society of India (SCSI) from city Sampat Ramteke is leaving no stone unturned to persuade the government for including SCD in the list. "Sickle cell, which affects much higher a population than other blood disorders like thalassaemia and haemophilia and also causes disabilities in patient, has not been included in the list. The bill is in the interest of everyone, so no one would oppose it. Since it is pending in the Lok Sabha I am seeking intervention at all levels," said Ramteke.
A committee formed by Ministry of Social Justice and Empowerment (MOSJE) from the Centre for Disability Studies, University of Law, in Hyderabad on April 30, 2010, submitted the draft RPWD bill in September 2012. Ramtake has been following up the issue since then.
Ramteke said, "There are over 10 lakh SCD patients spread across 14 states. Since majority of the patients are from remote areas, illiteracy and language barrier have not allowed formation of a united front at national level. As a result, the disease is not getting its due attention. However, diseases like thalassaemia with about four lakh patients and haemophilia with about 50,000 patients have organization support."
When Ramteke approached city MP Vilas Muttemwar he wrote a letter to the MOSJE minister Kumar Selja who in a letter dated March 13, 2013, assured to look into the issue. Even BJP MP from Chandrapur Hansraj Ahir and BJP MLA from Ballarshah Sudhir Mungantiwar have written to the Prime Minister in this regard. Ramteke has also written to the chairman of national commission from scheduled caste and parliamentary committee on scheduled caste and scheduled tribes on March 22, 2013. The committee has also given an assurance to Ramteke.
Even the national human rights commission during its hearing on atrocities on scheduled castes held in Nagpur on January 28, 2013, had promised to forward the demand to the central government. "On my perusal, SCD was included in the National Rural Health Mission (NRHM) in 2007. Once the right issues are brought to the notice of persons concerned, the government will not be averse to accommodating other diseases too in the bill," he said.
President of Sickle Cell Society of India (SCSI) from city Sampat Ramteke is leaving no stone unturned to persuade the government for including SCD in the list. "Sickle cell, which affects much higher a population than other blood disorders like thalassaemia and haemophilia and also causes disabilities in patient, has not been included in the list. The bill is in the interest of everyone, so no one would oppose it. Since it is pending in the Lok Sabha I am seeking intervention at all levels," said Ramteke.
A committee formed by Ministry of Social Justice and Empowerment (MOSJE) from the Centre for Disability Studies, University of Law, in Hyderabad on April 30, 2010, submitted the draft RPWD bill in September 2012. Ramtake has been following up the issue since then.
Ramteke said, "There are over 10 lakh SCD patients spread across 14 states. Since majority of the patients are from remote areas, illiteracy and language barrier have not allowed formation of a united front at national level. As a result, the disease is not getting its due attention. However, diseases like thalassaemia with about four lakh patients and haemophilia with about 50,000 patients have organization support."
When Ramteke approached city MP Vilas Muttemwar he wrote a letter to the MOSJE minister Kumar Selja who in a letter dated March 13, 2013, assured to look into the issue. Even BJP MP from Chandrapur Hansraj Ahir and BJP MLA from Ballarshah Sudhir Mungantiwar have written to the Prime Minister in this regard. Ramteke has also written to the chairman of national commission from scheduled caste and parliamentary committee on scheduled caste and scheduled tribes on March 22, 2013. The committee has also given an assurance to Ramteke.
Even the national human rights commission during its hearing on atrocities on scheduled castes held in Nagpur on January 28, 2013, had promised to forward the demand to the central government. "On my perusal, SCD was included in the National Rural Health Mission (NRHM) in 2007. Once the right issues are brought to the notice of persons concerned, the government will not be averse to accommodating other diseases too in the bill," he said.
Source : Times of India ( 19th April 2013 )
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