BioVoice News October 2017 Issue 5 Volume 2 | Page 40

bio chat “We plan to bring first in line treatment for acute lymphoblastic leukemia to India” One of the leading global biotechnology company, Shire headquartered in Dublin (Ireland,) is focused on serving people with rare diseases and other highly specialized conditions. Infact, the 80 percent of company’s annual R&D expenditure is channeled into rare diseases. In an interaction with the Biovoice News, Mr Vineet Singhal, Country Head, Shire India shared his detailed views on his company’s activities as well as the social and policy aspects related to rare diseases. Read the full interview below: BY RAHUL KOUL Provide an overview of the rare disease conditions in India. What are the major challenges and possible solutions? There are more than 7000 rare diseases known or reported worldwide. It is estimated that statistically one in 20 Indians may be affected by one of these 7,000 rare diseases. In a nutshell, about 70 million people in the country are suffering from some kind of rare diseases. Rare diseases include lysosomal storage disorders, inborn 40 BioVoiceNews | October 2017 errors of metabolism, immune disorder diseases like severe combined immunodeficiency or hypogammaglobulinemia, skeletal dysplasia where bones are not properly formed, blood- related disorders, neuromuscular disorders, and muscular dystrophies. The 3As - awareness, accessibility and affordability, still present a challenge when it comes to providing treatment for rare disease patients in India. The issue needs to be addressed as a priority and the primary focus has to be on increasing awareness