Sickle Cell patients still await sanctioned facilities

Payal Gwalani / TNN / Dec 11, 2015, 03:29 IST

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In the remote Mayabinpetha village in Sironcha tehsil in Gadchiroli district, children suffering from genetic blood disorder sickle cell disease (SCD) often die in their huts unattended by doctors.

Sickle Cell patients still await sanctioned facilities

NAGPUR: In the remote Mayabinpetha village in Sironcha tehsil in Gadchiroli district, children suffering from genetic blood disorder sickle cell disease (SCD) often die in their huts unattended by doctors. Even blood transfusion or medicines are not easy to come by in their little settlement. For any of these things, they need to go to Gadchiroli district hospital, a trip that would cost Rs 400, which is a very high amount for their parents.

Many of these deaths could have been easily prevented if the GR issued in March this year about providing free travel in state transport buses to SCD affected kids was implemented. There are several such benefits awaiting implementation even years after being sanctioned by the government that could make the lives of the patients easy. A list of eight such schemes was drawn up by city-based NGO Sickle Cell Society of India (SCSI). More than 1700 people from all over Maharashtra will be writing to chief minister Devendra Fadnavis during the state sickle cell awareness week that starts from Friday reminding him to implement these measures.
“We always keep blaming the government for not doing enough and making empty promises. The real culprits who get away without getting any blame are the officials and administrators responsible for carrying out the orders and decisions by the government,” said president of SCSI Sampat Ramteke. He added that it was about time that people started asking questions to the officials who are actually holding back the projects.
THE SCHEMES AND THEIR STATUS –

Free travel in state transport buses - After several years of making this demand to allow poor patients from rural areas to travel in ST buses at concessional rates. A GR was issued in March 2015 allowing the patient and one companion to travel free in the buses, with state government providing Rs15.11 crore for this. ST department asked public health department to deposit Rs 1 crore in advance for starting this facility, which still has not been done
Prenatal testing - Testing was available in GMCH till June 2012. Transfer of the doctor heading the ICMR project led to this facility being stopped. After much pressure from activists, Rs60 lakh was forwarded to state government from central government to start the facility in Daga Hospital in February 2015. The then health minister of the state Dr Deepak Sawant had assured it would start within next three months
Inclusion of hip joint replacement surgery in RGJAY - Hip joint replacement, which is frequently required by SCD patients, is not included in the list of 972 procedures covered by RGJAY in 2011. RGJAY CEO had written to National Rural Heath Mission commissioner to help resolve the issue in 2014. Government promised to include it when the contracts were redrawn in July 2015. A promise to this end was made by Dr Sawant. It is not included even in the renewed contract
Independent SCD ward - During the winter session in 2000, assurance was given by health minister Digvijay Khanvilkar to make a 30-bed independent SCD ward. Meetings were called on the issue many times, but nothing materialised.
SCD co-ordination committee - Different departments like public health department, tribal department, social justice department and women and child development get involved in the schemes related to SCD. However, there is no co-ordination between them. Chief minister Fadnavis agreed for a co-ordination committee and it was to be formed in May 2015, issued orders for the same. It has not happened yet

OTHER DEMANDS

Justified distribution of funds - RTI queries have revealed that Mumbai’s JJ Hospital admitted only 36 patients in three years from 2013 and 2015. Between this time, GMC Nagpur admitted 2236 and IGMCH 1655 patients. Yet all these hospitals got the same amount from DMER which was Rs38.50 lakh and Rs24lakh from NRHM each. Funds must be allotted to the hospitals based on the number of patients they serve
SCD control centre in city - The centre is now located in Mumbai. Nagpur being centre of the country’s SCD belt is better suited for it as most patients from the state live in and around the city
Forming SCD control and treatment act for the state

About the Author

Payal Gwalani

Payal Gwalani, a reporter for Times of India's Nagpur edition, covers health and weather. Almost every weekend, one can find her attending CMEs with the city doctors. She loves reading fiction novels, surfing through blogs and watching television. Besides writing news reports, she also writes poetry.

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