Rahiba R Parveen
SRINAGAR, Aug 11: Kashmiris are suffering the consequences of militancy that has wracked the valley for years, but there is a section of populace whose agonies have been compounded by another dreaded but silent killer: haemophilia.
Naseer Ahmed, a youth aged about 27 was only six years old when he was diagnosed that heavy bleeding in his injured head was due to haemophilia, with the disease, in which the clotting factor – a protein that controls bleeding- is absent in blood.
There was no stopping to heavy bleeding from his injured head, which was later traced to the genetic disorder that can even lead to death. Belonging to frontier district of Kupwara where health care was dismal coupled with a wave of violence owing to militancy, Ahmad gave up studies.
“It is too painful to describe those years. No school, no play and above all poor health without any available medicines for the disease,” narrates Ahmad, while waiting at a hospital for medicines in Srinagar, some 100 km from his home.
“Militancy was at the peak. Economically people suffered a lot. My parents sold their land to cope financially with this fatal disease,” he says.
About a month back, a small group of people- limping and bleeding- protested in the media hub of Srinagar in Lalchowk to be heard of their sufferings. The group was representing hundreds of people in Kashmir valley that have fallen to the silent but dangerous disease of Haemophilia.
It is caused due to the lack of clotting factor, a protein in blood that controls bleeding. The only treatment is the replacement of the missing clotting factor from healthy human blood plasma- a very costly and risky treatment.
Syed Azhar (name changed), 24, from Ganderbal developed a limp in both his knee joints due to the disease in 1987. “I had no idea that it was haemophilia. There was hardly any doctor to even prescribe the basic medicine.”
According to Haemophilia Federation of India, an estimated 65,000 people in India are living with haemophilia out of which only 12,500 are identified. In the valley, a survey by an NGO Society of Haemophilia care a few years ago projected 1500 patients. An approximate number of 130 patients are registered in the government medical college in Srinagar.
Many of these patients are already disabled, having lost the crucial in fighting the malady. Many live with a fear of attaining the viruses like Hepatitis C virus (HCV) from the low standard drugs (containing contaminated blood plasma) used as a substitute for the expensive sanctioned drugs.
After years of delay, Jammu and Kashmir Government issued rupees two crore last year for the procurement of standard Haemophilia drugs one each for the Government Medical Colleges (GMC) of Jammu and Kashmir. But within months the complaints poured in that there is a shortage of the proper drugs since March, resulting in many complications for the patients.
Last month Zahoor Ahmed, a Civil Engineer from Bandipora district, died due to heavy blood loss in his Kidney. “He had been infected with Hepatitis C due to the utter carelessness at Sher-i-Kashmir Medical Institute (SKIMS) who gave him unscreened drugs,” alleges Manzoor Ahmed, father of the deceased.
Ahmad rues the day he relied on government medicine for his son’s treatment. “They gave substandard medicine which became the ultimate reason for my son’s death,” grieves Ahmed.
The government had procured standard drugs only after high court orders following a Public Interest Litigation by Vijay Kaul the Executive Director of the Society of Haemophilia Care.
Now he is disappointed. “We wanted them (hospitals) to follow a protocol for safety aspects of the drugs. It is disappointing that they have dispensed with poor quality medicines which have increased the risk of blood related diseases among these patients,” said Kaul.
Medical fraternity confirmed the allegations of substandard drugs. Speaking on condition of anonymity, a doctor from GMC said, “After the funds were released last year, drugs were verified by the Foods and Drugs Administration (USA) but we went short of these drugs since March. We have been just managing with ineffective alternatives. A doctor cannot tell the patients go we can’t treat you, knowing that they have nowhere else to go.”
Kupwara’s Naseer Ahmad has other four family members suffering from haemophilia as well. “At-least we want some respect but unfortunately the doctors and officials think we don’t even deserve that. It is a life consuming disease. No one can afford the expenditure. We need assistance,” laments Peer.
(The author is a trainee, The Hindustan Times)