In line with events held to commemorate World Haemophilia Day, observed annually on April 17, a seminar held on Monday aimed to attract the provincial government’s attention to the plight of haemophiliacs in Sindh and urge the authorities concerned to make prompt efforts to address the challenges.
An inherited genetic disorder, haemophilia impairs the body’s ability to stop bleeds in case of an external or internal injury, causes easy bruising and increases the risk of bleeding inside weight-bearing joints such as elbows and ankles among others, as well as the brain.
Mostly affecting the male gender, the disorder occurs owing to the body’s inability to generate either one of the 13 blood clotting factors. Those suffering from the disorder have to be timely administered the deficient factor in case of an injury to avoid excessive bleeding which could result in the patient’s death.
“No public sector hospital in Karachi is equipped enough to properly tend to haemophilic patients brought in an emergency,” the general secretary of the Haemophilia Welfare Society Karachi (HWSK), Raheel Ahmed, told The News.
Among HWSK’s demands was a separate centre or desk dedicated to haemophilic patients at all government hospitals. The organisation, Ahmed said was willing to work in tandem with the health authorities to facilitate the patients.
“Diagnosing the disorder has been rendered extremely difficult owing to a lack of facilities. If such a centre is established, not only would the diagnosis but hospitalisation and surgeries of haemophilic patients would become cost effective. As of now, parents usually end up selling their belongings to afford a treatment if their child ends up with a severe injury,” he added.
A tedious process, the patients would previously have to wait for hours to have their factor level brought up through FFP’s (Fresh Frozen Plasma) which carry a maximum of 70 IUs (international units).
Fortunately for the advancement in science and technology patients can now be administered a minimum of 250 IUs through a single Dry Factor Concentrate – the maximum number of IUs a dry factor contains is 3,000.
But all is not so rosy in Pakistan since the life saving drug is neither manufactured locally nor does Pakistan import the drug like it does for several other illnesses.
As a result of this a single 250IU dry factor costs a patient at least Rs11,000 while a single 3,000 IU dry factor could cost around Rs108,000.
Senator Abdul Haseeb Khan, who spearheaded the passing of a landmark legislation by the Sindh government on thalassaemia in 2013, expressed annoyance over the absence of officials from the health ministry.
The programme was organised by the Novo Nordisk Pharma (PVT) Ltd in collaboration with the Federation of Pakistan Chambers of Commerce and Industry (FPCCI) Standing Committee on Blood Banks and Thalassaemia Centres and the Haemophilia Welfare Society Karachi (HWSK).
The event was supposed to be presided over by Sindh Health Minister Sikandar Mandhro, but he could however not grace the event neither was any other officer from the ministry sent as a replacement.
He urged organisations engaged in spreading awareness and providing relief to haemophiliacs to adopt measures which would ensure that the health authorities heard their demands loud and clear.
“What do you expect would happen when a country allocates only 0.9 percent of its GDP as its health budget?” the senator stated.
Diagnosed with severe haemophilia when he was a year old, Abbas Ali, who would be turning 28 this year, shared his life’s journey as a haemophiliac. “Given the criminal neglect of the state authorities in facilitating patients suffering from the disorder, it is a miracle that I and my fellow haemophiliacs have made it this far in life.”
Owing to an absolute lack of awareness in public regarding the disorder, he said it was extremely difficult to explain my moods, sudden absences from school owing to an injury to both my teachers and friends.
“You depend on your friends to cheer you up when you feel down and out, but I, on the other hand, had to hide my true self from the very same people because they had no idea what my condition was about. I was scared of the reaction people would direct at me on finding out about my condition.”
Rashed Rafique, Novo Nordisk Pharma’s general secretary, said the organisation was fully committed to changing haemophilia in Pakistan.
The event was presided over by FPCCI President Zubair Tufail. Senior member FPCCI Mirza Ikhtiar Baig, FPCCI VP Irfan Ahmed Sarwana and senior haemotologist Dr Tahir Shamsi also spoke at the event.