World Hemophilia Day was celebrated under the leadership of Sindh Blood Transfusion Authority (SBTA) in collaboration with Hemophilia Welfare Society Karachi.
World day is celebrated on April 17th each year however it was observed few days before here with the bleeding disorder community, said the statement released here on Friday.
In this connection, an event was hosted by Dr. Durr E Naz Jamal, Director SBTA, under the World Hemophilia Federation’s 2022 World Hemophilia Day theme “Access for all: Partnership. Policy. Progress. Engaging your government, integrating inheriting bleeding disorders into national policy.”
The event took place at the hall of Expanded Program on Immunization (EPI) provincial office Karachi, where bleeding disorder community was invited to show solidarity with them.
Representatives from different healthcare organizations, non-governmental organization also joined the event.
Speaking at the event Dr.Durr E Naz and her team briefed about SBTA’s advocacy efforts with the Govt. of Sindh to include Hemophilia in the yearly health budget. The team further shed light on SBTA’s relief efforts in collaboration with HWSK in order to increase the quality of life of the registered Hemophilia patients.
Dr. Durr E Naz further added that “The Sindh Blood Transfusion Authority with HWSK’s collaboration, in just one year has successfully completed covid-19, measles, mumps vaccination drives directed specifically towards the bleeding disorder community. Not only this, the SBTA has also recently initiated a drive at the HWSK premises for the eradication of transfusion transmissible diseases like Hep-B, Hep-C & HIV which is wide spread amongst Hemophilia patients due to unstandardized blood screening measures,” she added.
Raheel Ahmed, Founder-CEO HWSK, also a Hemophilia F-VIII deficient, concluded the presentation session by briefing about the efforts HWSK is doing in order to provide state of the art treatment and upkeep for all registered bleeding disorder patients.
He further added that, “The biggest challenge for HWSK is outreach and diagnosis to identify more bleeding disorder sufferers so that they can get access to treatment facilities, for this he urged government officials for their support and collaboration.
Due to effective public-private partnerships HWSK’s facility has become a comprehensive treatment center operating with a daily OPD of 50-60 patients, where in addition with the utilization of state-of-the-art treatment provided by the World Federation of Hemophilia’s Humanitarian Aid program, the bleeding disorder community can also avail facility of physiotherapy, free-of-cost pharmacy and basic diagnostics services making HWSK a one of a kind hemophilia center catering to Hemophiliacs all across Sindh,” he added.
Raheel ahmed expressed his gratitude to Husaini Blood Bank, NIBD, Indus Hospital RBC Karachi, PWA and other similar organizations for providing their facilities and services to HWSK.
Dr. Munira Borhany, Associate Professor Hematology, HOD Hemophilia Treatment Center (HWSK), MD NIBD stressed importance on Hemlibra therapy and state-of-the-art treatment against alternate treatment. She explained how hemophilia patients are at risk if the latest treatment is not made available.
Dr. Ghulam Sarwar from Saylani Welfare Trust offered hemophilia community to assist in diagnostic services for all registered bleeding disorder patients.
Manager PWA, Ms. Sehrish promised a constant supply of Cryoprecipitates for all bleeding disorder patients throughout the year.
Dr. Syed Sarfaraz Hussain Jaffry, Chairman Medical Advisory Board (HWSK) presented a donation cheque for HWSK in order to provide more relief to the bleeding disorder community.
Dr.Gawaskar Ghanwani, Assistant Director – CDC – HIV, health department Sindh said that, “The blood screening efforts do not stop at the testing phase and ensured future mechanisms for free-of-cost PCR services and treatment for bleeding disorder patients who have tested positive for HIV.”
Dr Javed from Burhani Blood Bank, Dr. Umer Daraz (Pathologist) and Dr.Farhan (HELP Thalassemia centre) also shared their thoughts.
At the end of the event Raheel Ahmed, presented a shield to Dr. Dure Naz to commend her for all the services she has offered in order to provide relief to bleeding disorder patients. Gifts and lunch boxes were presented by the SBTA amongst all the bleeding disorder children and the event came to an end with photo sessions and ending remarks from the organizers.
