PRESIDENT’S MESSAGE 2015/16
From its humble beginning in 1985, the Haemophilia Society of Singapore celebrated its 30th anniversary in December 2015. Thirty years is a long time; yet, we have struggled through the ups and downs and moved on to see improvements in the lives of our members. We have moved on from cryoprecipitate to factor concentrate, from plasma derived to recombinant, from hospitalization to home treatment, from on-demand to prophylaxis (for some), from no subsidy to partial subsidy given by the hospitals as well as by the Society, and from just replacement therapy to a comprehensive approach in the treatment centres. All these have contributed to the improved situation among people with haemophilia (PWH).
Today, we have a group of younger generation PWH who are more active, who experience less absenteeism from school and work, who are able to participate more in certain games and sports, who are able to travel overseas and most importantly, who are able to live without fear of bleeding. They can have aspirations and dreams like other normal children. Some have ambition to become engineers, lawyers and doctors. Haemophilia is no longer such a debilitating illness and they can look towards a promising future.
World Haemophilia Day falls on 17th April and the World Federation of Haemophilia’s goal for 2016 is “Treatment For All” and its interactive website invites people from around the world to connect with each other and share thoughts on how to achieve “treatment for all”. In Singapore, a number events were organized in April by various hospitals and a pharmaceutical company. There was a dental workshop at NUH and a Mothers’ Group baking session at Tott’s. In addition, various media’s publicity helped to create greater awareness of haemophilia.
At the community level, the Society was fortunate to be named a beneficiary for funds raised by the students of Hillgrove Secondary School in July 2015, Lee Foundation for its generous donation and the Singapore Island Country Club’s May Day Charity Event 2016. As a small charity, fund raising to help meet members’ treatment costs will always be a challenge. Nevertheless, the Society believed it must do its best to achieve its financial targets. It launched its third “Project Calendar 2016” which proved to be its most successful! Special thanks to the “little artist” Kayley Wee, whose paintings boosted sales and all who supported this project. In May 2016, under the capable leadership of Dr Tan Hooi Hwa, the Society held its second charity film premiere. Aside from its initial hiccups, the film premiere event was a success and its target was met thanks to Tote Board for its contribution, the many generous donors, friends and well-wishers.
The Society’s total expenditure was $205,057 and the total income for the year 2015/16 was $259,997. The increase in income was higher than the previous year 2014/15 and this was attributed largely to the generosity of our donors who supported the Society’s fund raising efforts. The Society expends the donations raised mainly on treatment subsidies of its members, which totaled $170,142.93 for the year. The Society continues to be helmed by a team of dedicated volunteers , with no paid staff and every dollar raised would enable the Society to do more for the haemophilic community in Singapore.
With the government’s announcement that MediShield Life would also cover pre-existing conditions including haemophilia, we are moving towards becoming a more inclusive society. Moreover, in May 2016, it was reported that attention would also be paid to those “living with unseen disabilities” as they too need “help and acceptance”. People with haemophilia, those with autism, the hearing impaired, those with dyslexia and many others would be included. This is good news indeed!
To end on this positive note, I would like to thank the three hospitals, namely Singapore General Hospital, National University Hospital and K K Children’s Hospital and the pharmaceutical companies, for their care of our patients and for their contributions to alleviate the financial burden borne by the patients and their families. Lastly, to thank my Executive Committee for their valuable contributions to the work of the Society.
Dr Gan Kim Loon