I represent a society of children suffering from a group of rare diseases collectively known as “Lysosomal Storage Disorders” (LSDs). These are genetic disorders arising from consanguineous marriages. These children suffer from movement disorders, seizures, dementia, enlarged livers/spleens, pulmonary /cardiac problems etc. and require ‘Enzyme Replacement Therapies’ for survival otherwise these children face early fatality or a slow, painful death.
In Pakistan, certain categories of life-saving medicines, on the recommendation of DRAP, are allowed to be imported at 0% custom duties in the Customs Fifth Schedule. Similarly, 2 years ago LSD therapies were notified as lifesaving by DRAP and recommendation sent to FBR for implementation. Unfortunately, despite my constant follow-up, the DRAP recommendation is still not implemented.
I appeal to the Prime Minister, Adviser to PM on Finance, Chairman FBR & Secretary Tariff to alleviate the difficulties faced by the patients and implement DRAP recommendation on an urgent basis allowing 0% duties on LSD therapies.
Atif Ejaz Qureshi