KARACHI, June 25: A two-year haemophilia welfare project was formally launched here on Monday to improve haemophilia care in the country, as a joint venture of foreign and local entities.
According to programmes as disclosed by the local partners in the project, Novo Nordic Haemophilia Foundation, Switzerland, will transfer expertise within the haemophilia communities and help developing projects for doctors, nurses and laboratory staff training and patient education at Karachi.
Speaking at the launching ceremony, which was attended by a number of scientists and philanthropists as well as haemophilia patients and their guardians, the senior scientific officer of the local collaborator, Bismillah Taqee Institute of Health Sciences and Blood Disease Centre, Arshi Naz, discussed the salient features of the project to be funded by local haemophilia society and the foreign foundation.
She said that haemophilia was a crippling disease, but it did not receive much attention and support in Pakistan.
Haemophilia in Pakistan was mostly a reflection of limited resources and lack of support to this disease requiring specialised care, she said, adding that patient monitoring and management were best described as limited, insufficient and inadequate.
It was said that the primary aim of the project was to update the knowledge and skill levels of healthcare providers in the diagnosis and standardised treatment of haemophilia and complications related to its treatment.
The goal was to establish a highly effective, adaptable and sustainable model of diagnosis and treatment of haemophilia and its complications in the country, said Ms Naz.
The expected outcome of the project in question includes training of four trainers involved in haemophilia diagnosis and treatment in two haemophilia centres in Karachi, enabling them to perform specific tests to measure clotting factor levels and train other healthcare providers at a later stage.
Screening of 650 haemophilia patients by ideal diagnosis for comprehensive treatment in Karachi and submission of treatment guidelines for haemophilia complications and to secure government funding for the treatment of haemophilia in particular patients are among the other objectives of the project.
Those who spoke at the ceremony included Dr Tahir Shamsi of the Bismillah Taqee Institute of Health Sciences, Dr Huma Qureshi, director, Pakistan Medical Research Council, Dr Munira, Dr Suhail Chughtai from Lahore, Dr Feroz and Dr Shehla.
According to experts who spoke at the function, one in ten thousand children is born with haemophilia, while 70 per cent of people with haemophilia remain undiagnosed and 75 per cent untreated.
Haemophilia is a several hereditary genetic illnesses, largely among males, that impair the body’s ability to control coagulation.
Pakistan has about 14,000 haemophilia patients. While treating the haemophilia patients there is a need to improve the prevention of bleeding, long term management, paying attention to joints and muscle damages, management of inhibitors and management of viral infections.
