Srinagar: A 3-year-old girl from Tangdhar area of Kupwara district is battling for life at Sher-i-Kashmir Institute of Medical Sciences (SKIMS) Soura where the blood clotting factor necessary to cure her is unavailable.
The girl was admitted to SKIMS Soura on February 23 when she was referred here from SMHS Hospital, which also lacked the blood clotting factor. The girl suffered a serious gastrointestinal bleeding last week.
“She is very critical after the bleeding episode but no hospital is taking care of her,” her father, Waseem Hussain, told Kashmir Reader.
“Doctors are telling us that the blood product required to control her bleeding is not available with them,” he said.
Where will I take my daughter now?” the distressed father asked.
Hussain has already lost one daughter from the same disorder in 2016 due to the absence of the blood factor.
In 2015, his second daughter was diagnosed with Von Willebrand Disease (vWD), a genetic disorder caused by missing or defective von Willebrand factor (vWF), a clotting protein, at SMHS Hospital.
The disease comes under Hemophilia category which is caused due to absence of certain factors in the blood.
Hospital authorities at both SMHS and SKIMS have failed to procure the blood factor, vWF, despite several requests by the parents as well as by the Hemophilia Society of Kashmir.
“The unavailability of the factor at SKIMS Soura has deteriorated her condition. The SKIMS doctors have expressed helplessness,” said Hussain.
“They are managing her serious condition with unnecessary blood products which may cause infections in her blood,” he said.
The girl suffered a similar episode of profuse gastrointestinal bleeding two years ago. Her life was saved following intervention by Hemophilia Federation of India, who sponsored her treatment and sent some 10,000 units of vWF.
“No hospital bothered to help us when she was on death bed. Only volunteers of the Hemophilia Society came forward to save her life,” her father said.
Syed Majid Qadri, President Hemophilia Society of Kashmir, said hospital authorities have left many patients of the blood disorder in the lurch due to lack of funds.
“Government has released Rs 2.5 crore for more than 250 hemophilia patients while there is requirement of more than Rs 12 crore per year,” he said.
Kashmir Reader carried a story last month about the absence of life-saving drugs and equipment at Government Medical College (GMC) Srinagar, which is facing shortage of nearly Rs 9 crore to purchase them.
According to official data prepared by GMC Srinagar, there are 280 hemophilia patients registered with it to receive free blood factors and doctors’ consultation.
However, they are suffering treatment relapse in absence of medicines due to the shortage of funds.
“The budget released last year for 280 Hemophilia patients was Rs 4 crore, which is not sufficient to meet the demands of patients,” reads an official communication sent to the Government by authorities of Hemophilia Day Care in SMHS Hospital.
“It is strongly recommended that Rs 12.91 crore should be released for this financial year so that Hemophilia patients are treated properly,” it says.
Head of Department, Pathology, at GMC Srinagar, Dr Ruby Reshi said she had sent several requests to J&K Medical Supplies Corporation for the purchase of blood factors including vWF for vWD patients. “But they have not purchased them citing lack of approved source for the drug,” she told Kashmir Reader.
Dr Reshi, who is in charge of the Day Care Center for Hemophilia patients, said she feels helpless and distressed when Hemophilia patients arrive at the hospital.
“What can we do when we are without funds? In some cases, we get factors through local purchase. But there is a limit for that, which we can’t cross,” she rued.