Urgent appeal

I represent a community of children who suffer from a group of rare diseases collectively called lysosomal storage disorders (LSDs). These genetic disorders are mostly seen in children from consanguineous marriages. These children suffer from movement disorders, enlarged livers/spleens, pulmonary/cardiac problems, etc., and require ‘enzyme replacement therapies’ for survival. In Pakistan, certain categories of life-saving medicines, on the recommendation of the Drug Regulatory Authority of Pakistan (DRAP), are allowed to be imported at zero percent custom duties. Two years ago, DRAP sent a notification to the FBR in which it classified enzyme therapy as life-saving. Unfortunately, despite my constant follow-ups, the DRAP recommendation has not been implemented to date.

I appeal to the prime minister, the adviser to PM on finance, the FBR chairman and secretary tariff to alleviate the difficulties faced by patients with LSDs and implement the DRAP recommendation on an urgent basis, allowing zero percent duties on these life-saving therapies.

Atif Ejaz Qureshi

Lahore