As 17th April 2019 marks the 29th World Haemophilia Day, the World Federation of Haemophilia (WFH) is focusing on reaching out and identifying new members of the bleeding disorder this year. But in Kashmir, one man is fighting to change the equations on the ground at a time when his afflicted tribe is struggling to prevent their bleeding fate.
Living with Bleeder’s Disease has always been a nightmare for Adil Fayaz. And to counter that nightmare, he had to cultivate a regimental routine. Done with taming his personal demon, he is now fighting the bigger battle—for the well-being of his tribe, which can bleed to death, even with a small prick.
In his late twenties, Adil is one among the 312 haemophilia patients registered in Kashmir’s prime health centre, SMHS Hospital. Around 100 children aged between 1 and 8 also fare in that list. They frequent health centres to get treatment. But Adil’s religious devotion to seek and fight for his unsound tribe’s treatment singles him out.
Back in 2016, he was awarded a prize of Appreciation for his Haemophilia campaign.
This health activist comes from Old City’s Kawdara locality — the neighbourhood which went up in raging flames some 30 years ago, at the outset of insurgency in Kashmir.
He was just two-year-old, when he had tried to move around and ended up injuring his mouth.
“I bled nonstop,” he recalls the grim moment, as narrated to him by his mother. “My family had panicked. They took me to a doctor. For around 4 days, the bleeding did not stop. They ran some tests on me and got to know that I’m suffering from Haemophilia.” For his poor family, the Royal Disease known to afflict Queen Victoria’s family sounded totally bizarre and “an outcome of some misdeed”.
But his labourer father Fayaz Ahmad and housewife mother Haseena had his back. “My parents sold their land to raise funds for my treatment,” Adil says. “Then Factors [or Fresh frozen plasma (FFP)] were quite expensive.”
As a blood product made from the liquid portion of whole blood, FFP is used to treat conditions in which there’re low blood clotting factors, like in Haemophilia.
Haemophilia is a rare genetic disorder which is an inherited bleeding disorder that affects the normal clotting process of blood, leading to excessive internal or external bleeding.
This often leads to disabilities due to crippled bones. One in ten thousand persons can get Haemophilia. Earlier the patients would be transfused with blood or plasma that would often lead to more complications.
Later, FFPs were introduced, but they’re too expensive. The patients with Haemophilia A are deficient of Factor 8 which costs Rs 3300 per vial. Likewise, the deficiency of Factor 9 leads to Haemophilia B and Factor 7 to Haemophilia C. Factor 9 costs Rs 9500 per vial and Factor 7 costs Rs 43000 per vial.
But it’s the dearth of drugs, lack of awareness and ill-timed medications that are making the lives of hundreds of Haemophilia patients hell.
Fearing they might die on their way to the hospital, the patients often inject lifesaving factors in their body by themselves without any supervision.
“I’m sure the doctors must be communicating the demerits of self-medication to patients,” says Dr Rabbanie Tariq, Registrar Community Medicine at SMHS Hospital, “but in a resource-limited setting like ours, people sometimes start it on their own, which again is not justifiable.”
To improve the treatment and the facilities, people like Adil have now started playing their part.
From birth, he says, life is a tussle for Haemophilia patients.
“We cannot play like other people, cannot work, learn or earn,” he rues. “Even a minor injury can kill us.”
He shares a shocking case of a teenager from the health station, Tangmarg.
That boy, Adil says, was the lone son of his family. Like other boys of his age, he too wanted to play cricket.
One day, as the boy was watching his village boys playing cricket in his hometown park, a lightweight Cosco ball hit his forehead.
“And for the next 12 days, he was on the ventilator in SKIMS hospital—struggling between life and death,” Adil says. “The medicine was not available on time. With the result, he died.”
Another patient, 14-year-old Hamid from south Kashmir’s Verinag became paralyzed due to lack of medicine. As a freeze frame now, he keeps staring at kids playing outside from his window, Adil says.
Many patients who didn’t receive timely treatment are now living a crippled life. Adil too walks with a limp.
But now, he says, education and awareness can help the haemophilic community to fight the disorder better.
“We can communicate with the people and tell them about this disorder,” Adil says. “It’ll get its due attention and someone may actually be able to find a cure or at least make it easy for us.”
Although Adil is busy fighting the bigger battle, his own personal fight is second to none.
He has already struggled to maintain a classroom routine. But after managing to pass Class 12, he’s now looking forward to pursue graduation in Science stream. Infact, most in his tribe are struggling to maintain a normal tab on their education. But that, however, hasn’t stopped them to become a big family.
“We grew together in hospitals,” Adil says, “and became friends forever.”
They eventually floated a self help group called Haemophilia Society of Kashmir, with the help of a Kashmiri Pandit, in 2011.
“Affiliated with Haemophilia Federation of India, our Society arranges money or travel expenses for patients. We raise awareness through media and campus visits and help haemophilia patients in schools to be treated as equals,” says Adil, General Secretary of the Hemophilia Society of Kashmir. “We even filed a petition in High Court after which the court pressed upon the government to keep the Factors available in hospitals. But, unfortunately, the government is yet to cater to our needs.”
Interestingly, Government of India has passed a bill, including Haemophilia patients as disabled people. “But it is yet to see the light of the day in Kashmir,” Adil says.
Amid this indifference, a prophylactic treatment must be given to haemophilic patients, as they need to take Factors twice a week.
“However,” Adil says, “patients in Kashmir get it only twice in 4 weeks.”
The hardened campaigner says he’s terrified to see his fellow patients including children dying due to unavailability of drugs.
“Most of the patients come from far-flung areas. They know how risky it is to inject Factors by themselves yet they’re left with no choice,” Adil says. “We cannot wait and die at home.”
Back home, Adil’s family often tells him to take some rest, but the youngster is only slogging for his unheard tribe. As sufferer himself, he says, he knows what Haemophilia is and how it feels to be its victim.
“Many Haemophilia patients are made to feel like they’re a burden on the family,” he says, with a long face. “But, I want to be there for them.”
The author is a Network of Women in Media, India (NWMI) 2019 fellow and a senior reporter at Free Press Kashmir.
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