Children with hemophilia suffer because of government apathy; no drugs in hospitals
The smile on the face of six-year-old hemophilia patient Shahbaz masks the pain he undergoes because of the government's failure to ensure his wellbeing and that of others like him.
"I have a disease that will never go away. That is why I cannot play and often miss school," Shahbaz said.
He has been admitted to the Hemophilia Daycare Center at the SMHS Hospital with a bleeding knee joint, a condition that will lead to stiffening of the leg and eventual disability in the limb.
Shahbaz is aware of that. But his condition could be better if clotting factors are available.
Hemophilia is a genetic disorder that impairs the body's ability to make blood clots, a process needed to stop bleeding. This results in people bleeding longer after an injury, easy bruising, and an increased risk of bleeding inside joints or the brain.
Doctors say that with adequate care, hemophilia patients live "near normal lives" in most parts of the world. However, in Kashmir, their story is tragic.
"Last week, his tooth had to be extracted and he continued to bleed for many days. There were no medicines here," said Ashiq Hussain, father of Shahbaz.
On a bed next to Shahbaz's, another six-year-old Hemophilia patient Mohammad Amin was being attended to by his distraught father.
"I lost my elder son to a bleeding episode in 2014. I don't want to lose my only son now," Amin said and broke down.
At SKIMS, Soura, Amir Wani, another hemophilia patient is battling for life, his leg facing an amputation.
In three months, his family said, a wound in his hip turned into an abscess for want of clotting factors.
In 2012, the High Court had observed that failure to ensure appropriate treatment to hemophilia patients was "injustice" and "any such lapse would result in fixing the responsibility on an officer who has committed the lapse".
"If the respondent (the state) fails to discharge its duties then the petitioner would be at liberty to file appropriate application which shall be taken up for passing appropriate orders," the court had said.
However, for hemophilia patients, including children like Mohammad Amin and Shahbaz, disability is almost certain, given their recurrent, untreated bleeding episodes.
In February 2016, the Government Medical College Srinagar routed funds meant for anti-hemophilia drugs to the JK Medical Supplies Corporation (JKMSCL) and the supplies arrived thereafter.
However, the use of these drugs was stopped on complaints of adverse reactions at the Hemophilia Center. Since then, the supply has neither been used, nor returned.
For one year and six months, the JKMSCL and GMC Srinagar have been exchanging communications over the issue, many of which are in possession of Greater Kashmir, but the matter remains unresolved. For Hemophilia Center, this indecision means lack of essential drugs for children like Shahbaz.
Managing director JKMSCL Inderjeet said that the rate contract of anti-hemophilia drugs "required renewal and would take some time".
"They have some stock of those drugs in GMC Srinagar. They can use that meanwhile," he said.
Prof Samia Rashid, principal GMC Srinagar, said the matter has been taken up with the authorities.
"We are on it," she said and declined to say anything more.