Prof. Tahira Zafar,Director Haemophilia Treatment center (HTC) shares her experience of developing haemophilia care in Rawalpindi with Paediatric Oncology in Developing Countries (PODC) & Children Cancer & Lymphoma Group (CCLG) virtual meeting on 11th Feb 2021
The haemophilia journey started after a chance encounter with a patient of Haemophilia , listening to his lifelong misery & suffering o & realizing that the absence of appropriate medical treatment caused immense problems, both emotional and financial, for haemophilic patients and their families & deciding to work to improve their care.
A small clinic was established in haematology dept. of AFIP in the early nineties. As word got round patients started coming from everywhere, overwhelming the system. This led to a group of Haemophilia care physicians ,patients, parents & volunteers to form a haemophilia Society ,Haemophilia patients welfare Society Rawalpindi (HPWS Rwp) in 1999 ,with its own Haemophilia Treatment Center( HTC) &joining hands with a network of hospitals(Haemophilia Friendly Hospitals ,Holy Family , Benazir Bhutto & Children hospital ) & Haemophila Care Givers(Medical Advisory Board) which included specialties like haematology, orthopaedics ,physiotherapy, dentistry, gynae & obstetrics . The Society & the HTC moved into a bigger office (809 D Satellite Town). Links were developed with local institutions, Armed Forces Institute of Pathology (AFIP) , Armed Forces Institute of Transfusion (AFIT),Pakistan Institute of Medical Sciences(PIMS), National Institute of Health (NIH).
Haemophilia Society office & Treatment Center
Development of a Haemophilia Center at Children Hospital PIMS covered the inpatient requirements & development of a strong team which included a rehab medicine consultant and a paediatric dentist.
Haemophilia Treatment Center , Children Hospital ,PIMS
It was realized at this stage that it was important to create awareness & educate patients & their families about haemophilia .With support from Novo Nordisk Haemophilia Foundation, literature was developed in Urdu & workshops were conducted to improve knowledge about haemophilia.