For three years, students from Victoria Junior College worked with the BMDP to spread the word about our life-saving cause and help us recruit more donors. They learned that blood diseases can strike anyone at any time and that leukaemia and lymphoma are not lifestyle diseases caused by the patient’s behaviour. Nonetheless, it was still a huge shock when one of their schoolmates was diagnosed with leukaemia. When chemotherapy failed to stop the very aggressive spread of the cancer cells, a bone marrow transplant – something they had all learned about from the BMDP – was her last and ONLY chance at survival.
Fortunately the BMDP was able to find a matching bone marrow donor for this young student and we hope that life will resume after her treatment. For her classmates, it showed how a disaster can be averted with advance planning.
Fired up by this close encounter and a real-life lesson that bad things do happen to absolutely anyone, the student leaders campaigned passionately for the BMDP, forming the “International Awareness” Club. The leaders engaged the students through a campus-wide game to illustrate the helplessness and difficulties that patients often face when searching for a matching bone marrow donor and of course, continued their drive to get more donors signed up.
“Through this whole experience, our team fully understood the challenges and that it is really an uphill task to find a match. We are proud to have played our part in helping our schoolmate and also other people in the future who may need find a match”, said one of the student leaders.
While many of the second year Victorians had already signed up last year, the campus donor drive was still a huge success and 309 new bone marrow donors were recruited during the 2 days drive in school.
Way to go Victorians!
Why don’t people sign up as bone marrow donors? For some, it’s just that they are too lazy or they didn’t see us anywhere convenient – but the main reason(s) are still the myths and misconceptions that abound. “It can make you weak!”, “You won’t have babies after that!”, “You lose part of yourself – forever!” are some that we have heard.
SERIOUSLY!!! We live in Singapore!! How can anyone believe the BMDP would be allowed to get away with anything that is harmful? That’s why we keep reinforcing the message and work hard to educate the masses on the REAL TRUTH.
Every week the BMDP is out with our mobile exhibition – in the Malls, Libraries, Hospitals and Schools – giving people a chance to ask questions and most importantly take that crucial step to sign up. Adding more depth to our story, the exhibition includes a new interactive display table which takes the viewer through the entire journey from stories about our patients to debunking the myths and sharing the donor’s experience.
Please go try it out when you see it at our next public event and share your thoughts. After all, it’s everybody’s business and together we are committed to giving everyone that precious last chance.
Below are the dates of our upcoming exhibitions –
|3 – 9 Jul||Hougang 1|
|10 – 16 Jul||Vivo City|
|15 – 30 Jul||Ang Mo Kio Merchant Fair|
|12 – 20 Aug||Chinatown Point|
|16 – 22 Oct||One KM Mall|
|1 – 7 Dec||Chua Chu Kang Public Library|
|8 – 14 Dec||Ang Mo Kio Public Library|
|15 – 21 Dec||Cheng San Public Library|
To the world, they are unknown. To their patients and families, they are heroes. They are our bone marrow donors. Away from the limelight, donating stem cells to save a life was just a handful of hours and an act of generosity they wanted to do. We gathered these extraordinary people – our donors – for one night not to glamourise but to give them the recognition they each deserve.
Watch the video clip that celebrates life and ordinary people being extraordinary.
What is your usual reaction when a fundraiser walks up and asks if you would like to support and make a donation to the cause? Do you:
1. Stop and listen?
2. Ignore and keep walking?
3. Detour to avoid them?
Admit it! Most people do anything to avoid them which is why we appreciate the work of our fundraising partner, APPCO. They put up with a sometimes very hostile public to help share our message. Without them, we could not have the sustained growth that has enabled us to help more patients. More than just helping to bring in critical funding, they also sign up new bone marrow donors and through their public education, more people are aware of our mission.
So for those who ignore and avoid fundraisers, what else could we do? For the past 8 years, the BMDP has held an annual gala bringing in more than half a million dollars each time and last year we had a flag day which helped with around $20,000 and our youth teams also contribute. But with no regular government funding, this wasn’t enough to plan for long-term growth and provide the professional service that the hospitals need. Plus, adding 17,000 new donors to the register alone cost us about $3 million.
While some argue about the expenses of using fundraisers we consider this a necessary expense when we measure it against the lives we can save. Take Ryssa and Phil for example, if BMDP did not have the funds to add Phil to the register, Ryssa would not have found a matching donor.
Besides fundraising, APPCO also helps build awareness simply by being present in the community. A big Thank-You to our dedicated and hardworking bunch of men and women in bright orange t-shirts! The next time you see them on the street, please spare a minute and hear them out or just say a word of encouragement.
Questions were raised recently on how we spend our funds with some queries on how exactly we support patients. We appreciate that the BMDP is a rather unusual entity and so we wanted to take some time to clarify this.
Our primary focus from the start was to build a register of volunteer donors. All the monies we raised went into recruitment and tissue typing donors so in this way we have created an asset for all Singaporeans. One of our long terms goals was always to provide support to patients but in the early days with limited funds, the focus was apparent.
Recently we received a substantial donation of almost $1 million and the Board felt it was timely to set this aside to help patients and so we started the Patient Fund. We have always been very aware that patients who are Singaporean or PR being treated for a blood disorder can use their MediSave and MediShield to cover some expenses. But they are NOT able to use these monies to pay for any of the expenses incurred in finding the best donor and then collecting a bone marrow or blood stem cells for transplant.
This is something that we have tried to address over the years and the discussion continues with different parties. We understand all too well that being diagnosed with a potentially terminal illness is bad enough but very quickly money becomes a huge issue for every patient and at the same time, a chance of being cured also means getting quickly from diagnosis to transplant.
To quickly start the transplant process, the BMDP subsidises the cost of the first Verification Typing for any Singaporean or PR patient which is the important first step to get them a match. Interestingly, only half the patients are eligible but that’s understandable with Singapore’s position as a regional medical centre.
When it comes to the cost of the Bone marrow or blood stem cells, we can assist any Singaporean or PR patient referred to us by the Medical Social Workers. These are the staff in the Hospitals who can do the means testing and they then submit an application to us which we review on a case-by-case basis for Board approval.
Under the charity guidelines, all our funding must go to help the local community and so we support Singaporean and PRs only. The cost of the procurement and VT is significant, ranging from $22 – 65,000 but it is only a part of the total transplant costs which can easily reach $300,000 in total. Our commitment as Singapore’s national register and as a charity committed to saving lives, is to ensure that no impediment is put between a patient and getting at least a chance of a cure.
After sweeping the Citi-YMCA Youth For Causes awards in three categories in last year’s event, the 2017 Matchstick Concert was back – bigger, bolder and better! This was another win for our education team who have established partnerships with more than 23 schools and JC’s that include Anglo-Chinese School, Raffles Institution, Singapore Polytechnic, National Junior College, LASALLE College of the Arts and School of the Arts Singapore.
Speaking about the project, student team leader, Auyok Ryan was confident that his project stint with the BMDP would be a valuable asset in his university applications. “Academic results are no longer enough and the Matchstick Concert gave me an exciting project to share that combined leadership, project management and a life-saving cause such as recruiting bone marrow donors”, he said.
Good luck to Auyok and all of the amazing performers as they move onto the next stage in their academic journeys and we look forward to more exciting things to come!
Imagine what it must have been like – to have not one baby to celebrate but three and all at the same time! A handful most definitely and for one Singapore family, having triplets – two boys and a girl – was indeed a gift. But just a few years after she was born and not growing as fast as her brothers, 5-year-old Ryssa was diagnosed with a rare blood disease, Myelodysplastic Syndrome. In and out of the hospital, the doctors advised that she must have a bone marrow transplant if she was to grow into adulthood.
Just before her 7th birthday, she received her life-saving gift of blood stem cells from 27-year old Singaporean, Phil Tan who was on the BMDP register. But take a minute and imagine this… what if Phil was not signed up in the BMDP’s register because we didn’t have the funds to process his cheek swab? Ryssa would not have a matching donor, and she might not have a second chance in life.
Since last year, the cost of processing a cheek swab kit to be added to the register has increased from $150 to $180 and we spent around $3 million to add 17,000 new donors on the register. This year, we will need another $3 million to help increase the odds for patients with blood disease to find a match.
Your donation can help add more local heroes like Phil onto the register, saving more lives. At any time, 50 patients are waiting for a bone marrow donor. Please increase their chance of surviving by donating generously!
Please help us by donating over here – https://www.giving.sg/the-bone-marrow-donor-programme/we-need-your-help
FAQ responses to points raised within the Sunday Times article, June 4, 2017
Does the BMDP add any ‘mark-up’ to patient costs?
No. When a bone marrow transplant is required, there are several costs involved which patients need to cover. This includes the price of medical check-ups and laboratory tests carried out on the donor to ensure they are fit to donate, and the medical procedures required to safely collect the stem cells for the transplant.
These costs vary, as each register has its own pricing and when we need to transport bone marrow from overseas, the cost will also include transportation expenses. As a global protocol, donors are not paid for making their life-saving donation.
As the national donor register for Singapore, the BMDP provides a specialist service to the transplant hospitals to identify the best possible donor for the patient, liaises with the donors directly or through international registries to procure the bone marrow and provides hands-on care and support for the local donors and their families to facilitate their needs linked to the donation.
To do this, a small administrative fee is added to the laboratory and hospital expenses incurred a cost for the patient, which contributes towards the service we provide, making it possible for our people to do their job, without which, this life-saving process may not be possible.
What is the BMDP’s Patient Fund?
In 2015 the BMDP received a legacy donation from a single benefactor worth just over SGD$900,000. With this generous donation, the BMDP established the Patient Fund to support Singaporean and Permanent Resident patients in need of financial assistance – which had long been an objective of the BMDP.
Every day, six Singaporeans are diagnosed with blood diseases, like Leukaemia or Lymphoma, that may require a bone marrow transplant. As the costs involved in identifying donors and procuring and harvesting bone marrow or blood stems cells are excluded from Medisave and Medishield, for many patients, the financial assistance provided by the BMDP, really is a lifeline.
In just over a year and a half since setting up the Patient Fund, the BMDP has provided financial support to more than 60 eligible patients consuming approximately 25 percent of the Fund.
How exactly is the Patient Fund utilised?
All eligible patients are provided with a full or partial subsidy to cover the cost of one Verification Typing; the re-typing of the volunteer donor which is the mandatory first step towards a transplant. This cost varies from just $1,400 for a local donor or up to $3,000 for an international donor.
For Singaporean or PR patients unable to afford the cost of their bone marrow procurement for the transplant itself, the BMDP can also provide full or partial funding to cover this cost. Patients are referred to the BMDP by Medical Social Workers from the public hospitals. Procurement costs range from $20,000 for a local donor to a maximum of $64,000 for a donor from the United States, for example.
The BMDP is committed to ensuring that the Patient Fund continues to provide lifesaving financial support to patients in Singapore who need help to pay for the costs associated with their bone marrow transplant.
Does the BMDP invest in marketing?
Yes. One of the main challenges for the BMDP is educating the public to understand that bone marrow donation is a safe and straightforward procedure with no long-term side effects.
We know that the more people understand this fact, the more people we can add to the local volunteer donor register and the more lives we can save in Singapore.
The chances of a Singaporean patient finding a bone marrow match are approximately one in 20,000 outside of their family. These odds decrease depending on race, with only 8-10 percent of current registered donors being from Malay or Indian ethnic backgrounds. When a match cannot be found in Singapore, the BMDP needs to look to other countries for a match, which increases the cost and therefore affordability of the transplant for the patient.
In 2015, we were awarded a SGD$2.25 million grant under the Care & Share Movement, an initiative led by Community Chest, which marked the 50th anniversary of Singapore’s independence.
Using this funding and another grant received directly from the Tote Board to cover the tissue typing expenses (laboratory tests for new donors), we launched ‘Project Tomorrow,’ our ambitious three-year plan to see 50,000 new donors added to our register by 2018. This has involved community engagement and grassroots awareness raising via exhibitions and roadshows, as well as our first ever media advertising campaign.
To date, ‘Project Tomorrow’, has been instrumental in allowing us to raise awareness and change public perception about becoming a bone marrow donor, helping us to increase our register from 62,000 in April 2016, to 80,000 by April 2017, and rising.
At the BMDP, we are committed to using this fund responsibly to continue to raise public awareness about bone marrow donation in Singapore, to reach our 2018 target, to increase the chances of Singaporeans finding a local match and keeping treatment affordable for those who need it most.
You may think that saving a life is something to boast about – but not Phil Tan. His parents did not know about his donation until much later. He is a true hero and the world needs more people like him.
“A true hero. An inspiration,” Seng Jia Ying says of her father, Seng Kang Boon who saved a life with his bone marrow. This encouraged Jia Ying to become a bone marrow donor too, so she can – hopefully, one day – walk in her father’s shoes.
Fruit hawker, Kang Boon enjoys serving the community and for 20 years, volunteered at the Singapore Anti-Narcotics Association and was active in the People’s Association. His interaction with a regular customer’s child who had a blood disease, made him want to do more to help and in 2005, he became a bone marrow donor. “I was at HSA (Outram) blood bank when I came across the BMDP and since I’m already a regular blood donor, I thought why not sign up as a bone marrow donor too?”
After only 6 months on the register, he was found to be a match for a patient. “I was unperturbed about the donation. Grateful for my life’s blessings, I want to help in whichever way I can and if donating my bone marrow was a way to help, I was glad to do it,” the 53-year-old recalled and unlike many donors who have family support, Kang Boon went through it alone. “I didn’t want my then young children to worry or to burden my wife with my decision,” he explained.
Kang Boon donated via the PBSC method. He describes his experience, “Before the donation, I underwent injections to increase stem cells growth in my bloodstream so that the bone marrow could be extracted through a method similar to blood donation. The donation itself took less than 9 hours to complete. I was back to work the very next day and apart from being a little more tired than usual, I felt otherwise normal and didn’t experience any side effects. 11 years later, I’m still in good shape!”
His family only learned about the donation when they received a fruit basket from the BMDP. “Before the donation, my father was merely a fatherly figure but after this, I never looked at him the same again. He’s a hero minus the cape,” Jia Ying confessed. At a BMDP roadshow, Jia Ying signed up as a donor. As her father says, “we don’t need profound ways to help.”
The aspiring teacher hopes to instill in her future students the self-sacrificing spirit, “like my father, I don’t have much to offer but anything I can do to help others, I will,“ she said.
Both father and daughter are united in their call to lend a helping hand. “Spend a little time to understand about bone marrow donation so the myths and misconceptions won’t mislead you. Keep an open mind and spare a few minutes at a donor drive booth. You only live once and so do others. So help within your capacity and expect nothing in return!” they echoed. What a team!