ISLAMABAD, Apr 17 (APP): The first ever stakeholder consultation on a national level was organized by Speak Trust in collaboration with the Hemophilia Federation of Pakistan (HFP).
The objective of the meeting was to initiate a national debate on the issues, challenges and inequities faced by the hemophilia community in Pakistan on World Hemophilia Day 2023.
The event was chaired by Dr. Ambreen Nadeem, Deputy Director Health, Ministry of National Health Services, Regulation and Coordination and Ali Abbas Zaidi President HFP, a Hemophilia patient.
Office bearers of all the local chapters of the Federation were also present as well as the eminent hematologists, patients parents and other stakeholders including Prof. Lubna Zafar, Consultant Hematologist, Prof. Farwa Sijjel, Incharge PIMS Blood Bank, Air Vice Marshal (retd) Aftab Hussain, Sundas Foundation, Prof. Hasan Abbas Zaheer, WHO Advisor of Blood Safety.
Shahbaz Akbar Chaudhary, Founder of SPEAK Trust welcomed the participants and outlined the aims and objectives of the consultative meeting and the plans to address and mitigate the challenges faced by hemophilia patients and families.
The HFP representatives highlighted in detail the various aspects of the disease and its challenges in the local context and provided recommendations and suggestions, especially in view of the 2023 theme “Access for All: Prevention of bleeds as the global standard of care”.
Prof. Zaheer talked about the global and national hemophilia scenario and stressed the need to have a Technical Working Group notified by the Health Ministry to work on the ‘National Policy on Genetic Blood Disorders’ followed by the development of the national strategic framework to successfully manage these disorders in Pakistan on the lines of the successful experience of the other countries.
In developed countries and even in some developing countries, these genetic blood disorder patients are well managed on prophylaxis (factor concentrates and other medicines) and have a normal life span with minimal morbidity and mortality rates.
They are considered chronic disorder patients requiring multi-disciplinary care.
During the interactive discussion session, the participants shared their valuable insight and provided useful and workable solutions for improving the quality of life of Hemophilia and other bleeding disorder patients in Pakistan including improved diagnostic facilities, provision of prophylaxis and emergency factor concentrates and medications, quality rehabilitation services, registration of the latest hemophilia medicines by DRAP, the establishment of dedicated hemophilia treatment and care centres in large cities etc. to enable the patients to lead normal lives and contribute as useful members of the society.
The Health Ministry representative appreciated the efforts of the meeting organizers to gather all the important hemophilia national stakeholders under one roof.
On behalf of the Health Ministry, she committed to work with them for the welfare of the hemophilia patients and also convey the deliberations of the meeting to the health ministry leadership for necessary action by the government.
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