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 MD Roche Pakistan, Ms. Hafsa Shamsie, Roche’s Head of Medical, Dr. Yasir Adnan as well as paeds neurologist Dr. Raman Kumar and hematologist Dr. Munira Borhany and Dr. Saqib, Director Health Services, Health Department, Govt. of Sindh.
Ms. Hafsa Shamsie, MD Roche highlighted the fact that even for those who have been diagnosed, the lack of government healthcare spends and support makes the treatment burden for rare diseases even more difficult to bear. Rare diseases sufferers are the neglected outliers in Pakistan’s healthcare system. Roche is a company that is committed to serving rare disease patients by bringing innovative treatments that can help patients live a fully normal life or at least a much better quality of life. But, treatment is one side of the picture. Ensuring that patients have awareness about rare diseases, and access to these standard of care treatments is the other side of the picture. She shared that since 2017, Roche has run a Patient Support Program that has helped almost 25,000 patients with free of cost treatment for a number of diseases including Spinal Muscular Atrophy and Multiple Sclerosis.
