KARACHI: 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 emphasise the unmet needs of patients especially when it comes to awareness, funding and government support. The panel comprised MD Roche Pakistan, 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, Government of Sindh.

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 standards of care treatments is the other side of the picture.

She shared that since 2017, Roche has run a Patient Support Programme that has helped almost 25,000 patients with free of cost treatment for a number of diseases including Spinal Muscular Atrophy and Multiple Sclerosis. But as the burden of disease grows no one company or entity can go it alone. That is why it is critical to have the government on board through public private partnerships. This will help to support rare disease patients by including funding for standard of care treatments into government healthcare programmes. She said rare disease patients deserve the same care, attention and inclusion as other patients and that is why it is time that “Recognising Rare” becomes a healthcare priority too.

Dr Yasir Adnan explained that worldwide about 300 million people live with a rare disease. Moreover, with Pakistan having over 240 million people, the rare disease incidence in this country becomes more acute with such a large population.

Copyright Business Recorder, 2024