Govt fails to recognize hemophilia as disability

Published at May 17, 2018 04:13 AM 0Comment(s)1842views

Patients suffer in absence of comprehensive hemophilia care


Govt fails to recognize hemophilia as disability

Mansoor Peer

Srinagar:

 Jammu and Kashmir government doesn’t recognize hemophilia as a disability due to which patients have been living a miserable life.
A comprehensive budgetary provision is still not in place for the comprehensive hemophilia care.
“We have only recognized seven disabilities but we will in the next six months recognize hemophilia as a disability and we are working on it,” Commissioner for persons with disabilities, Mohammad Iqbal Lone said during an event to observe hemophilia day at Government Medical College, Srinagar.
The day is observed annually on April 17, however this year it got delayed here due to “unavoidable circumstances”.
“We have schemes and once the hemophilia is recognized a disability, we will help the patients. They will have to go through a registration process to get the benefits,” he said.
There are issues with the hemophilia patients and it takes one to suffer a disability to understand what it is, Lone said, adding that in case of any help, the patients should contact his office.
He asked principal GMC to display the contact numbers of the department at the hemophilia daycare centre, SMHS hospital so that patients can contact them for any kind of help.
“Government has extended financial benefits to disable persons to the tune of rupees 1000 and same will be applied to hemophilia patients. In case there are unmarried girls suffering from the disability they can also avail benefits for their marriage,” he added.
The event was organized by Hemophilia Society of Kashmir (HSK), in collaboration with hemophilia daycare centre and department of pathology at GMC auditorium here during which patients and faculty members were present.
Principal GMC, Dr Samia Rashid on the occasion said that they are making every possible effort to make available medicines for such patients. “We have also pressed for the enhancement in the budgetary provisions for them,” she said.
Speaking on the occasion, nodal officer for hemophilia patients and HoD pathology Dr Ruby Reshi said that hemophilia causes many disabilities among patients if not diagnosed and treated at proper time.
“There are 285 cases which are registered at SMHS,” she said. She also said that in India around 15,000 hemophilia cases are registered with National Hemophilia Registry.
“They should have a painless life which is our motive and we have a dedicated team of doctors at the hospital. There is a need to open daycare c entres at district level which will help in the early detections,” she said.
Associate Prof Department of pathology, Sheikh Bilal said hemophilia is not a disease but a psychosocial problem, which needs sensitization of the community towards the issue.
“There is a need to generate awareness among the people so that young lives are saved at the earliest. It needs combined awareness and efforts, team approach and human resources for the early diagnosis and management,” he said.
There are many ways to effect change in the community, locally, nationally, and globally thorough disease education, volunteering advocacy work and financial assistance which is lacking here.
Hitting at the government “negligence’, president, Hemophilia Society of Kashmir, Syed Majid Qadri said that the State government has failed to come up with a policy for hemophilia patients due to which they are at risk.
“We have only rupees 2.5 crore budget for a year which is very low given the prices of the medicines especially factor-VIII which remains unavailable at the SMHS daycare centre,” he said.
He said due to issues the patients remain bedridden and are not able to do anything and the government was least bothered about it.
Qadri said there are many states in India where hemophilia centre have been opened but added that it still remains a dream in district hospitals here.
“Haryana has 22 district level c entres, Telangaya has four, Bihar 4, Ranchi 2 but we have only one here which is very unfortunate,” he said.
He appealed the government to increase the budgetary provisions so that these patients do not suffer and get the medicines at the earliest.
“We are not being provided any incentive by the government due to which we are suffering. There is no reservation for us in government jobs and in educational institutions,” said Qadri, who himself is a hemophilia patient.

mansoorpeer@risingkashmir.com

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