KARACHI: Speakers at an event held in connection with the World Haemophilia Day 2022, being observed on Sunday (today), urged the government to allocate funds for haemophilia patients in the upcoming budget.
The event was jointly organised by Sindh Blood Transfusion Authority (SBTA) in collaboration with Haemophilia Welfare Society Karachi (HWSK) at EPI Hall on Friday.
The theme of this year’s World Haemophilia Day is “Access for all: Partnership. Policy, Progress, Engaging your government, integrating inheriting bleeding disorders into national policy”.
Speaking at the event, SBTA director Dr Durre Naz Jamal said her department was pushing the case of haemophilia patients at the official level and it hoped that the government would allocate a certain amount for haemophilia patients in the budget.
She also spoke about the efforts taken in collaboration with HWSK over the past one year that included the Covid-19 and measles vaccination drives specifically launched for the bleeding disorder community.
“Not only this, the SBTA has also recently initiated a drive at the HWSK premises for the screening of hepatitis C, hepatitis B and HIV. The prevalence of these viral diseases is high among patients of bleeding disorders due to usage of unstandardised blood screening kits,” she said.
Founder HWSK Raheel Ahmed, also a haemophilia patient, briefed the audience about the society’s efforts to provide state-of-the-art treatment and care to all registered patients of bleeding disorders.
“The biggest challenge for the society is to reach, diagnose and identify more patients living in far-flung areas. This is why we need assistance of government officials,” he said, adding that the society’s centre had turned into a comprehensive treatment facility operating with a daily OPD serving 50 to 60 patients daily.
Mr Ahmed appreciated the support extended by the World Federation of Haemophilia as well as other organisations, including Hussaini Blood Bank, National Institute of Blood Diseases and Indus Hospital.
Dr Munira Borhany, associate professor of haematology heading Haemophilia Treatment Center, said: “Transfusion of fresh frozen plasma to haemophilia patients is an obsolete method and today the best way to treat these patients is to give them the missing blood factor with the help of injections so that the blood can clot properly.”
This method, she pointed out, reduced chances of adverse effects and viral infections that were high in plasma transfusion.
“But, these injections are too costly and beyond the reach of most patients that frequently need this support. Also, there is no government facility to offer specific blood clotting factors to patients,” said Mr Ahmed.
Dr Ghulam Sarwar from Saylani Welfare Trust also spoke at the event, which was attended by a large number of haemophilia patients.
Published in Dawn, April 17th, 2022