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60,000 kids suffer from Thalassaemia in Pakistan
 
 
 

ISLAMABAD – ‘Federal Minister for Capital Administration & Development (CAD), Nazar M. Gondal, has announced to establish a dedicated facility for the treatment of Thalassemia patients in the near future.
The minister was speaking at the completion of the fourth successful year of Simone Montomoli Bone Marrow Transplant Centre at Children Hospital, Pakistan Institute of Medical Sciences (PIMS) Islamabad.
The Thalassemia patient awareness programme was organised on the completion of 50 transplants in Bone Marrow Transplant unit (BMT), Children Hospital PIMS. Children Hospital of PIMS and Cure2Children Foundation (C2C) had organized the event.
“I salute the courageous children suffering from Thalassemia and their parents for being patient and wishing to treat their sick kids. I instruct the Executive Director PIMS to establish a dedicated and independent facility for the treatment of children suffering from Thalassemia. I thank the Italian government and people for their support and help.  The dedication and commitment of the doctors has made the successful Bone Marrow Transplant of 55 children so far”, said the minister.
Gondal announced that the much awaited Liver Transplant Centre and Cardiac Centre will be inaugurated at PIMS by the Prime Minister, next week. He added that Bone Marrow Transplant Centre has been providing services to needy people who cannot afford exorbitant cost of treatment. The Government of Pakistan has been providing funds through Bait-ul-Maal for such deserving patients.
Pakistan Bait-ul-Maal MD Zamrud Khan on the occasion announced to bear the cost of bone Marrow Transplant for ten deserving Thalassemia children, each costing Rs 600,000.
Italian Ambassador to Pakistan Adriano Chiodi Cianfarani also spoke on the occasion. He said the Italian government and people are with Pakistan and happy to help them in any way. Dr. Lawrence B. Faulkner, Advisory Board Coordinator of Cure to Children, also shared his views with the audience. Cure to Children is an Italian NGO that provided grant for the bone marrow transplant centre.
Executive Director PIMS DR. Riaz Warriach, Dr. Amjid and Dr. Sadaf spoke on the occasion.
The aim of the programme was to increase awareness about prevention, management and cure of Thalassemia major in Pakistan. Thalassemia major is the most common genetic blood disorder. There are about 60,000 children in Pakistan suffering from this disease and 5,000 new cases are born every year. Children with Thalassemia are unable to make normal red cells resulting in severe anemia and transfusion-dependency.
Supportive care cost is in the range of PKR Rs 15000 per month but in spite of this, majority of children die before adolescence. The Bone Marrow Transplant (BMT) is the only curative treatment with the cost of 1-1.5 million/ Transplant.
About 50 per cent of children have a compatible sibling and can have a 90 per cent cure probability if they receive BMT before 5 years of age.
The Cure2Childen Foundation (C2C) is an Italian organization recognized by both the Italian and the Pakistani governments and supporting the cure of cancer and severe blood disorders of children.
In 2008, a two-bed Bone Marrow Transplant (BMT) unit at the Children Hospital of PIMS in Islamabad was established by the joint collaboration of C2C and PIMS for the cure of non-affording children with Thalassemia and Aplastic anemia. This unit, the first one of its kind in a government hospital in Pakistan, is also performing screening and prevention in extended families.
Till November 2012, this BMT unit has performed BMT of 55 non affording Thalassemia and Aplastic anaemia children and preventive screening of 1000 family members of effected children, thanks to Financial support by C2C Italy, “Pakistan Italian Debt for Development Program” (PIDSA) through C2C, Children Hospital and Pakistan Bait-ul-Mal.
This BMT programme has provided invaluable training for PIMS, a teaching hospital affiliated with both undergraduate and postgraduate nursing and medical colleges. As a result, PIMS has recently provided additional 3 BMT beds increasing the yearly BMT capacity from 15 to 30 transplants.

 
 
on epaper page 14
 
 
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