This very first morning session of World Orphan Drug Congress Asia kicked off with a panel discussions with Simon Collier (Shire), Hyun Min Shin (Korea Organisation for Rare Diseases), Bruce Hewett (Link Healthcare) and Patricia Ng (Rare Disease SocietySingapore) gave us an interesting insight into the world of Orphan Drug.
Shire is a business leader and have years of experience in the field of Orphan drugs for genetic diseases. They are a global innovator in specialty biopharmaceuticals. Korea Organisation for Rare Diseases ( KORD) is Korea’s platform to encourage public awareness and patient access towards orphan drugs for rare diseases. Link Healthcare is an organisation that focuses on specialist pharmaecutical products and medical devices. Since it was founded in 1997, they have started to offer a comprehensive suite of expert services. Rare Disease Society is Singapore’s platform to foster awareness towards
One of the most pressing issues raised during this panel discussion is the hurdles that industry stakeholders have to overcome in the orphan drug sector. Hyun Min Shin commented that despite having extended public awareness and governmental support towards rare diseases in Korea, patient accessibility to orphan drugs is still a huge problem that needs to be addressed as soon as possible. Smaller pharmaceutical companies are starting to increase investments towards orphan drugs development and we need these drugs to reach the market.
Simon highlighted that the same can be said for Japan. Government support is present but there are still two main challenges that have to be overcomed. The first is pricing and reimbursement while the second is approval and uptake. With help from the Japanese government in recent years have decreased the cost of orphan drugs development and accessibility. Furthermore, there’s a ’14 day rule’ currently where prescription of new medicines cannot be more than 2 weeks in 12 months. This makes it tough for rare disease patients to receive prompt treatments as physicians and hospitals are less likely to prescribe these medicines. Hence uptake and treatment is delayed.
Patricia summed up this question in Singapore’s perspective. She feels that more should be done to encourage advocacy and awareness towards the disease so that patients can have access to better care here in Singapore.