SRINAGAR: Adil Fayaz and Parvaiz Ahmad, two boys in their mid-twenties, are suffering from haemophilia since childhood. Their families had spent everything they had on their medicines and now unable to arrange money for their treatment.
“It has been 20 years since I am living with this disease. Whatever money my parents had was spent on my medicines. They sold the land and other valuables and it was difficult for them to make further arrangements for my treatment,” says Adil Fayaz.
One fine day in 2010, Parvaiz, a diploma holder and Adil, a 12th class student, read on internet that the treatment for their disease is provided free of cost across the globe. From there they started the fight against their ‘rights’.
“Earlier the Hematologists at SK Institute of Medical Sciences, Soura, would treat us by giving Fresh Frozen Plasma. But then when we read the actual treatment to our disease is to induce Anti-haemophilic Factors which are given free of cost to the patients all over the world.”
The duo together started to represent their issues along with other 270 haemophilia patients.
In 2010, after 15 patients died due to lack of medicines, the duo filed a Public Interest Litigation (PIL) in High Court of Jammu and Kashmir. “On the very 2nd hearing, the judge pronounced that factors needed by the haemophilia patients should be made available in GMC, Srinagar and Jammu respectively, and a haemophilia centre be created in the hospital,” says Adil.
“At SMHS hospital’s blood bank, the Factors were made available for a couple of months. For rest of the year, they were dry. Then they would put us on Fresh Frozen Plasma (FFP).”
In 2011, after the death of one more haemophilia patient, the duo again approached the court which again gave the decision of making Factors available round the clock and stressed on creating a haemophilia centre.
“Despite government sanctioned the budget, the Factors were not made available. Again they provided the Factors for couple of months and for rest of the months they were out of stock. The plasma they were giving us was unsafe; many patients got unwell,” they said.
In 2012, when 90 patients were screened, 45 were tested Hepatitis C positive, 2 had Hepatitis B and one was suffering from HIV. “This was all because of the FFPs they were giving us. Had blood samples been properly screened we wouldn’t have been diagnosed of Hepatitis,” says Parvaiz.
This ‘callous’ approach of the hospital authorities again made Adil and Parvaiz to knock the doors of court. “The court directed the then commissioner health to make medicine available and open the Hemophilia centre at the earliest.”
“Then the center was started and three assistant surgeons, who had just qualified their MBBS, were tasked to handle us. Preferably, a Haematologist should have been in the haemophilia centre, but since SMHS hospital doesn’t have a haematology department they made the assistant to experiment on us,” says Adil.
The documents lying with duo, present some of the misdiagnosis done by the assistant surgeons. “Firdous, one of the haemophilia patients, came with the compliant of headache one day. The assistant surgeon gave him a paracetamol and told him to get a CT scan done. As the CT scan machine was not working, Firdous went to SKIMS, Soura where the doctors immediately admitted him in Intensive Care Unit as he had an external head bleeding. He was bleeding so profusely that he collapsed in an hour,” they said.
“The hematologist at SKIMS said if Firdous would have been given Anti-Hemophiliac Factor at the first place he would have survived,” says Adil.
Sharing another incident, they said: “In 2015, one more haemophilia patient Abdul Majid died due to inefficiency of these assistant surgeons. Majid came to the center and complained of abdomen pain.”
In the evening, they said, Majid again came to the emergency department at SMHS hospital, and the doctor there told him to immediately conduct an ultrasound test which showed his spleen had burst. “He was immediately operated. Majid was the nephew of a politician so special care was given to him.”
Now, what infuriated the duo was the death of Anam-ul-Haq, a 12-year-old boy. The documents lying with Adil reveal that Anam had external bleeding. “When he was brought to the Hemophilia Center, his hemoglobin was 2.1grams.The assistant surgeon referred him to G B Pant hospital without having an idea that the blood bank in the hospital was non-functional since 2014 floods. This ignorance cost the patient his life. Had he been given blood at the right moment he also could have survived.”
To save lives of rest of the patients, Adil and Parvaiz called a meeting with the heads of departments at SMHS hospital this week, demanding probe into the death of Anam. They are representing the case of haemophilia patients at every platform.