|President||Chee Chun Woei|
|Vice President||Dr. Gan Kim Loon|
|Honorary Secretary||Wee Ai Choo|
|Assistant Honorary Secretary||See Ek May|
|Honorary Treasurer||Lim Keok Kung, Freddy|
|Committee Member||Ang Har Boon, Anthony|
|Committee Member||Ng Teck Hiang|
|Committee Member||Tan Gek Cheng|
|Committee Member||Dr. Tan Hooi Hwa|
|Committee Member||Tan Kai Ern|
President’s Address 2020/21
After one and a half years, the world is still struggling with the Covid-19 pandemic. So far, it has claimed the lives of more than four million people. We are dealing with a very tricky enemy. There are variants emerging one after another, even as nations are speeding up their vaccination programmes. Viral mutations are unstoppable. New strains are found to be more contagious and more formidable. We are unlikely to see the virus going away in the near future and we will have to accept that it will remain with us for a long time and we will have to adapt our lives to a new normal.
The theme for the year 2021 World Haemophilia Day is “Adapting to Change, Sustaining Care in a New World”. Haemophilia is a hereditary condition. People with Haemophilia (PwH) must deal with their disability life-long, adapting to challenges one after another. There are different forms of treatment over the years, complications arising from the treatment, and complications arising from the bleeds. These are some of the challenges they have to adapt to throughout their lives.
When haemophilia was first diagnosed in the early 1800s, therewas no proper treatment available. I was told when a boy gets a joint or muscle bleed, the treatment given were some analgesics, bandages, immobilization, cold compress, and hospital stay till the swelling and pain subsides. Life expectancy was then about 14 years.
From the 1950s to 1960s, fresh frozen plasma was introduced for treatment, but the patient needed a large volume of the
plasma to stop the bleeding. Complications could arise due to fluid overload. By 1960, life expectancy of PwH had risen to 20
years. Still, almost none lived to adulthood.
By 1965, cryoprecipitate was found to be the preferred treatment. It is a preparation from thawed plasma; it contains more factors in a smaller volume. It was considered good enough for surgical procedures for PwH; but it must be given in a hospital setting and if often caused allergic reactions. This, however, was considered a breakthrough at that time.
In the 1970s, freeze-dried powder formula of Factor VIII and Factor IX were available. These were prepared from pooled
plasma resulting in neatly packaged bottles of freeze-dried factor concentrates. This powdered formula made it possible
for home treatment for the first time, greatly changing the lives of PwH.
However, in the 1980s, we saw the emergence of HIV and AIDS. Many PwH throughout the world were found to be
HIV positive and suffering from AIDS through contaminated products. In addition, many also had contracted Hepatitis C
through the blood products. Although factor concentrates were available in the 1970s and 1980s, PwH in Singapore were
not given these products. They were given cryoprecipitate that was prepared locally, thus sparing them from the unfortunate
disasters of HIV and AIDS. However, they were not spared from Hepatitis C infection.
By the 1990s, stringent blood screening was introduced, and viral inactivation of blood products was implemented to weed
out potential viral contaminants. From early 2000, recombinant products of factors VIII and IX were available. Treaters were encouraged to use these products especially for children. With the use of these newer products and the implementation of prophylaxis, these boys are expected to have a normal life span if given appropriate treatment.
Recently, more developments have come into the picture. There are products with extended half-life, thus reducing the frequency of infusion, increasing treatment adherence, and improving clinical outcomes; finally achieving a good quality of life. ,There is also the non-factor replacement agent. This is especially useful for PwH with inhibitors. Eventually, our ultimate hope for all PwH is the availability of gene therapy in the near future.
Due to the restrictions during this period of pandemic, several activities have been shelved. We could not have group activities
like outings and physical meetings. We could not also proceed with our annual movie screening for fund raising. However, we managed to start a Youth Committee with the objective of fostering bonds among the young members. The first event was the ‘ Le Valiant ‘ on 13 December 2020, a gaming competition carried out virtually. Then on 6 February 2021, a virtual talk was given by Dr Yap Eng Soo, Consultant Haemotologist, from the National University Hospital on “Re-look at Haemophilia and What’s New?”. Fortunately, this year we were able to carry out our ‘ Project Calendar ‘ which brought some funds into the Society.
In the financial year of 2020/2021, the Society raised a total of $202,121. However, treatment subsidies for the same period
came up to $265,176 . Treatment subsidies make up 94.65% of the Society’s expenditure.
To conclude, I would like to thank all our supporters, individuals as well as corporations, for their unstinting generosity despite the difficult times we are facing. Many thanks also go to our health care workers, especially those who have been looking after our members. Finally, my expression of sincere gratitude goes to the Society’s Committee Members for their selfless volunteerism in the Society.
Dr Gan Kim Loon