Advocacy

Thalassemia is a lifelong disease and needs a lifelong treatment. Due to the disease severity and its expensive treatment, a prevention program should be instituted. AMTF have planned to work in phases i.e. in Phase-1 to work on awareness at school, colleges, universities, print/ electronic media and in coordination with other bodies inclusion of thalassemia awareness in the curriculum as well the implementation on the said legislation.

AMTF in collaboration with other bodies will work at every thalassemia centre in Pakistan where we work hard on thalassemia index cases, screen their first relatives and siblings of index cases. AMTF is doing thalassemia screening for every registered patient’s family. All thalassemia centre should present their data that they have screen there centre once we screen every centre it means we will screen most of the potential.

In Phase-2 as an alliance of all thalassemia bodies should go for implementation of law for screening program before marriage. Also documentation of the screened status on either each of the documents i.e. CNIC, passport or driving license level.

Any prevention program requires data collection followed by interpretation. In Pakistan We have given enough knowledge about Polio, Hepatitis, HIV but NOT about thalassemia .We should provide the knowledge first to the general public and give them time to interpretation. This is not possible for success of any prevention program if we do not provide data /knowledge and ask public to interoperate.

For carrier screening we will do complete blood count, as well as hemoglobin electrophoresis or hemoglobin high performance liquid chromatography.AMTF offered prenatal diagnosis to the pregnant woman/couple at risk for having a fetus affected with a clinically significant thalassemia or haemoglobinopathy. Prenatal diagnosis should be performed with the patient’s informed consent.

How can we help you?

Contact us at the AMTF office or submit a Inquiry form online.

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