Rare diseases need govt attention

A leading pharmaceutical company held a panel discussion on rare diseases and the needs of patients.

In recognition of Rare Disease Day, Roche Pakistan Limited held a panel discussion and press briefing to raise awareness about rare diseases in Pakistan, and to emphasize the unmet needs of patients especially when it comes to awareness, funding and government support.

The panel comprised Roche Pakistan Managing Director Hafsa Shamsie, Roche Head of Medical Dr Yasir Adnan, paediatric neurologist Dr Raman Kumar, haematologist Dr Munira Borhany, and Sindh Health Dept Health Services Director Dr Saqib Ali Shaikh.

Roche Managing Director Dr Hafsa Shamsie emphasised the challenging treatment landscape for rare disease patients in Pakistan due to limited government healthcare support. She said Roche strives to alleviate this burden through innovative treatments, along with awareness and access initiatives.

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Since 2017, their Patient Support Program has aided nearly 25,000 patients with free treatment for various diseases. Dr Shamsie stressed the need for collective efforts to prioritise rare disease care, advocating for equal attention and inclusion in healthcare.
Dr Adnan said rare diseases like multiple sclerosis, spinal muscular atrophy and hemophilia pose not only debilitating physical and health challenges for the sufferer, but also for the families of patients and for the society at large.

Dr Kumar warned of spinal muscular atrophy, a severe neuro-muscular disease, prevalent in Pakistan due to frequent cousin marriages.

Dr Borhany said Hemophilia A can lead to fatal outcomes or permanent joint disabilities, significantly impacting patients' quality of life.