Pakistan Bait ul Mal would give Rs 36,000 per annum to all the deserving Thalassaemia patients admitted in Pakistan Institute of Medical Sciences (Pims). This was announced by Zamrud Khan, Managing Director Pakistan Bait ul Mal.
While addressing a seminar organised by PIMS in collaboration with Pakistan Society of Haematology (PSH) and Jamila Sultana Thalassaemia Welfare Trust (JSTWT) to mark the World Thalassaemia Day here on Friday. Chaudhry Muhammad Afzal Sandhu, Minister of State for Health, was the Chief Guest on the occasion.
Dr Altaf Hussain, Executive Director PIMS; doctors form various hospitals of the twin cities of Islamabad and Rawalpindi, patients along with their families were also present. On the occasion Zamrud Khan also announced that Pakistan Bait ul Mal in collaboration with Pims will also establish a special park for Thalassaemia patients. Thalassaemia International Federation (TIF) is an organisation which is working for the patients of Thalassaemia world-wide.
It marked May 8 as the World Thalassaemia Day to express solidarity with Thalassaemia patients world-wide. It is determined to identify the problems and needs of the Thalassaemia patients and their message for this year is to "reach every patient". In Pakistan the estimated number of Thalassaemia patients is between 50,000 and 100,000. Every year about 5,000 children are born with Thalassaemia.
Speaking on the occasion medical experts said that in a developing country like Pakistan, it is very difficult to identify all Thalassaemia patients to know what treatment they are getting and to find all their needs and requirements. They stressed upon the need for a definitive initiative by the government to register all patients, provide adequate treatment and above all prevention of this disease.
Dr Tahira Zafar, Consultant Haematologist highlighted the problems faced at the centre due to lack of funds. She requested the honourable minister to help in this regard. She discussed about the prevention of Thalassaemia and said that prevention of Thalassaemia is cheaper and easier as compared to its treatment.
The cost of treatment of Thalassaemia per child per year is Rs 170,000 and cost for BMT is Rs 15 - 20 lakhs, whereas prevention of Thalassaemia is much cheaper. "It includes targeted screening (family screening for carriers) which costs Rs 1,000 and prevention of marriage between carriers", she said.
Dr Lubna Naseem, in-charge Blood Bank PIMS, said that such patients require regular blood transfusion from infancy. "The blood bank is making all the efforts to support transfusions but in view of the enormous burden, a regular voluntary blood donation programme needs to be in place", she added. Dr Atifa Shoaib, Haematologist, talked about iron overload which can cause a lot of problems including severe heart diseases and heart failure.
"Many drugs are now available for this purpose including Desferal, Deferiprone etc. These drugs are very expensive therefore there is a need for public and private support", she said. Thalassaemia is a genetic disorder of haemoglobin production and is transmitted from parents to children.
It is very common in people originating from the Mediterranean, Middle East, South Asia, and South East Asia, the largest group being Cypriot, Pakistani, Indians, and Bangladeshi. In Thalassaemia, haemoglobin production is so low that normal growth and development can only be achieved by regular blood transfusions from infancy, due to which excess of iron is accumulated. Therefore chelation therapy is needed to get rid of iron overload.
The definite treatment of Thalassaemia is Bone Marrow Transplant (BMT) which is very costly and unaffordable for the poor. The Executive Director PIMS Dr Altaf Hussain, while addressing the participants said that Thalassaemia Centre was established at Pakistan Institute of Medical Sciences (PIMS) in 2005.
"It has currently 683 registered patients of Thalassaemia and the hospital give them services like blood transfusion, iron chelation, evaluation and diagnosis, genetic and psychological counselling, family screening etc", he said. On average, 3,000 blood transfusions are carried out at the centre every year. This year a Bone Marrow Transplant (BMT) Centre was established which has already done 2 transplants.
Chaudhry Muhammad Afzal Sandhu, Minister of State for Health, in his address appreciated the efforts of the Thalassaemia Centre and ensured his full co-operation and support to the patients. "It is very important to create awareness among patients and society about Thalassaemia and Thalassaemia Centre, PIMS must continue good work they are doing for the welfare of these patients", he added.