There is a need to undertake legislation in order to make Thalassemia, Hepatitis C and other blood tests mandatory before marriage in order to protect children from Thalassemia and other fatal diseases. There are currently over 1,50,000 Thalassemia major patients in the country as compared to mere 1,000 patients in Britain.
These views were expressed by speakers while addressing the inauguration ceremony of Kashif Iqbal Thalassemia Care Center, Blood Bank and laboratory (KITCC) here at the Federation House on Sunday.
Speaker Sindh Assembly, Nisar Ahmed Khoro, said that the presence of 0.2 million Thalassemia major patients and yearly increase of 6 to 7 thousand Thalassemia babies, demanded preventive measures to eradicate Thalassemia from Pakistan.
The syndrome not only afflicts the families who suffer with the life long financial burden but it also lays immense negative impact on socio-economic and health sector of the nation.
Khoro stated that having realised the rise in Thalassemia afflicted patients, a resolution was passed in Sindh Assembly in its session of 16th October 2009 for making it mandatory for youths through legislation to have their blood screened before marriage to investigate the gene of Thalassemia.
Provincial Minister for Health, Dr Sagheer Ahmad, said that it is high time to bring the laws to control Thalassemia Major in Pakistan by motivating Thalassemia Minor couples to undergo the blood screening before marriage and to avoid inter-marriage in case they are found to be Thalassemia Minor.
He said that the government and social sector require launching an awareness-raising campaign. While appreciating KITCC for creating much needed awareness about the prevention of Thalassemia, he said that the welfare institutions like KITCC Karachi could play a vital role.
He said that the establishment of Blood Bank and Laboratory at KITCC, where iron-chelation therapy and other essential treatments to Thalassaemics are being provided free of charge, is a dire need for the society and more and more philanthropic organisations should come up to share their responsibilities.
Prominent businessman and Patron-in-Chief of Kashif Iqbal Thalassanemia Care Centre (KITCC), S M Muneer, urged the members of parliament to pass the bill making the blood tests compulsory before marriage to prevent Thalassanemia and other fatal diseases.
He appreciated the members of Sindh and NWFP assemblies for taking the lead and passing similar bills making Thalassanemia, Hepatitis C and other blood tests mandatory before marriage.
This, he added, was a long-awaited bill and he urged National Assembly, Senate of Pakistan, Punjab Assembly and Balochistan Assembly to table similar bills in their respective Assemblies and ensure the implementation of same in letter and spirit.
Kashif Mulla, Joint Secretary of Kashif Iqbal Thalassemia Care Centre (Trust), said that each year about 5,000 to 6,000 children are born with Thalassemia Major in Pakistan and 'we need to prevent the birth of such children'.
This can happen if Thalassemia carriers are identified before their marriage. Kashif said that in developed countries the carriers of the disease are often identified when they donate their blood or do a CBC or Blood CP test but due to lack of awareness in Pakistan not all Pathologist or doctors can identify such carriers. Laboratories and Blood Banks throughout the country can play an important role in identifying such carriers, adding we just need to provide proper guidance to them.
It was informed that Kashif Iqbal Thalassanemia Care Centre (KITCC) has been providing free services since 1996 with 13 affiliated centres across Pakistan.
Trust serves countless children and adults by educating them on this disease, its prevention and providing blood transfusion and testing facilities. Mohammed Iqbal Chairman KITCC said that KITCC not only provides free medicines, injections and infusion pumps, blood testing and transfusion to such families who can't afford this treatment but also arranges for 'Thalassemia Camps' throughout Pakistan on regular basis where it creates awareness about Thalassemia and conducts free blood tests to diagnose Thalassemia Minor or Carriers.
One of the notable achievements of KITCC is that it developed the infusion pump in 1999, which is the life line of such patients in Pakistan.
Sultan Ahmed Chawla, President, Federation of Pakistan Chamber of Commerce and Industry (FPCCI) said that Thalassemia is not only a dreadful disease but it also creates distress to the entire Thalassemic family and lays a negative impact upon the national exchequer because as per experts estimate, its treatment involves an average expenditure of Rs 130,000 per child annually.
Since Thalassemia is not a curable disease, therefpre prevention measures have to be adopted to eradicate Thalassemia from Pakistan, he added.
Chawla congratulated the KITCC for locally manufacturing the infusion pump, which helps a lot in providing iron-chelation Therapy to Thalassemics at an affordable cost. Sardar Yaseen Malik said that Kashif Iqbal Thalassemia Care Center (KITCC) Karachi has been devoting its energies and resources for mitigating the sufferings of Thalassemic families and creating awareness about this fatal blood disease of children.
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