ISLAMABAD (APP) Cultural taboos and cousin marriages are major causes in spread of thalassaemia in Pakistan and the government needs to launch a national campaign to create more awareness about fatal disease.
There are about 80,000 children in Pakistan suffering from thalassaemia major, the most common fatal genetic disease in the world and additional over 5,000 children with thalassaemia born annually, Dr Lawrence Faulkner, Medical Advisory Board Coordinator, Cure2Children Foundation Italy told APP here on Sunday.
Dr.
Faulkner is also Coordinator of a two-year grant of Rs 50,000,000 from the Pakistani-Italian Dept-for-development Swap Agreement for a project on the cure and prevention of thalassaemia in Pakistan.
Emphasising on prevention, he called for a comprehensive national campaign involving all stakeholders on board to create awareness about deadly syndrome of thalassemia among the masses especially among poor people.
In Pakistan almost 75 percent thalassemia patients come from poor and uneducated families, he said adding expensive treatment is beyond their reach as each blood transfusion require Rs.
4000.
The therapy of this silent killer is much costly which also needs more and more contributions and donation of blood, he said.
Supportive care for this disease is a huge economic burden on affected families, being hian the average income.
As a consequence, the majority of children do not live beyond adolescence.
The cost of bone marrow transplantation is equivalent to a few years of supportive therapy, but contrary to this, provides a definitive cure, returning to normal life over 80 percent of children who have a compatible sibling.
Sighting Cousin Marriages and cultural taboos as major causes, he said both sexes hardly go for blood screening before marriage to prevent a child with fatal diseases.
Dr.
Faulkner said that in Italy every woman get under inductive screening thats why Italian nation remain successful in overcoming this disease along other nations like Iran and Cyprus.
In December 2010, C2C received a grant of 50 million PKR (approx.
?450,000) for the Cure & Prevention of thalassaemia major as part of the international debt-swap agreement between Italy and Pakistan (PIDSA - Pakistan Italian Debt-for development Swap Agreement).
As of August 2011 were 450 families registered who have been offered free screening, and a total of 60 children have undergone transplantation.
In the 30 low risk cases the success rate was 87 per cent, a result consistent with the original objective and comparable to that obtained in Italy and other rich countries.
In higher-risk children success has been in the 62 percent range, which is also an acceptable result which is gradually improving.
These results have been obtained with a cost about ten times lower than that in rich countries, not considering all the avoided inconvenience and hardship for the families involved and the contribution to the growth and motivation of local doctors and nurses.
Vincenzo Prati, Italian Ambassador in Pakistan assured that his country would provide all possible support to get rid of this disease.
Italy wants to be partner of Pakistan not because we are friend but we believe in Potential of Pakistan, he said.
Urging for expansion of treatment unit across the country, he said Pakistan could become hub for fight against thalassaemia in the region.

This news was published in The Nation newspaper. Read complete newspaper of 03-Oct-2011 here.