Nagpur:

As the government rallies to mark the 125th birth anniversary of Babasaheb Ambedkar, activists from the region are trying to draw attention towards the problems faced by those suffering from

cell disease. The

blood disorder is known to affect the downtrodden population the most. Several facilities that activists have been demanding for patients of the disease have not been granted, or remain on paper.

City-based NGO Sickle Cell Society of India (SCSI) has compiled a list of such demands in a memorandum signed by around a hundred patients who gathered in the city at a recent convention. The memorandum will be sent to Prime Minister

, union health minister JP Nadda, union social justice minister Thavarchand Gehlot, union tribal affairs minister Jual Oram and union minister of chemicals and fertilizers Hansraj Ahir. Members of the organization are upset that several demands put up before political leaders have only been verbally accepted, and those that became policies were never implemented properly.

“The most fitting tribute to Dr Ambedkar from the government would be to do something for the tribal and economically backward people, who suffer from the disease. Over the years, we have put up so many demands that would have made the lives of patients easier, but they have not been taken seriously by the government,” said Sampat Ramteke, president of SCSI. He added that the demands compiled in the memorandum were earlier sent to the Prime Minister in a letter sent on June 19, 2014, which was World Sickle Cell Day.

The demands in the petition relate to formulating a national policy on sickle cell prevention and treatment, starting a national SCD research centre in Nagpur, forming a SCD fact finding

, and creating awareness among public representatives of 110 districts in the country that are home to a huge SCD affected population. Ramteke said that these things will help provide better facilities to patients of the genetic disease in India.

“Even after six decades of independence, the government does not even know how many people in the country suffer from SCD. A country like USA, which has only a fraction of the number of patients as us, has better policies for SCD prevention and treatment,” he said. SCD is not included in the National Disease Control Programme or the National Health Programme, and is not a notified disease, which does not help the patients at all, pointed out Ramteke.

DEMANDS BEFORE UNION GOVERNMENT

Creating National Sickle Cell Prevention and Treatment Policy:

SCD affects people from 12 Indian states, mostly those from economically backward, tribal backgrounds. Since most people don’t know about the disease a lot or cannot afford treatment, the policy will help control the number of people suffering from it.

Building a SCD Research Centre in Nagpur:

The city is in the middle of country’s SCD belt, with several patients living within 600km of Nagpur

Forming SCD Fact-finding Committee:

In 2012, then President

had issued an order to form the committee to conduct population surveys. It has not been followed through

Creating Awareness Among Public Representatives:

Activists have difficulty explaining the importance of the need for facilities for SCD patients as public representatives don’t know about the disease

OTHER DEMANDS

Prenatal test for diagnosis of SCD has not been available in city for four years. Assurances about starting the service at Daga Hospital have been forgotten for a few years.

Despite assurances, procedures like hip joint, shoulder replacement have not been included in Rajiv Gandhi Jeevandayee Arogya Yojana

GR issued on March 10, 2015, provided free travel on ST buses for SCD patient and one companion. Despite budgetary provision, facility hasn’t been provided to patients yet