Could your race affect your chances of getting a bone marrow transplant?
The fact is, Malays and Indians are not adequately represented in the bone marrow donor register. But why is race important in this health scenario?
By Balvinder Sandhu -
Picture this – you are suffering from a terminal illness and getting a bone marrow transplant is your last chance of survival but you're unable to receive it because of your race. This could be a reality if you're a Malay or Indian patient in Singapore.
The Bone Marrow Donor Programme (BMDP), which manages Singapore’s only register of volunteer bone marrow donors, is addressing this pressing issue. The fact is, Malays and Indians are not adequately represented in the bone marrow donor register.
Patients with terminal blood-related diseases like leukaemia, lymphoma or myeloma who do not respond well to standard chemotherapy or radiotherapy may be advised to go for a bone marrow transplant. In such cases, these patients will require healthy blood-forming stem cells from a matching donor to be infused in their body to replace their bone marrow that is not producing healthy cells. But why is race important in this health scenario?
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Priya Tharisini Ganesan, 32, BMDP's public education executive, explains: “Matching donors and patients is much more complex than matching blood types. Doctors match donors to patients based on their human leukocyte antigen (HLA) tissue type.
“A patient’s ethnic background is important because HLA markers used in matching are inherited. Some ethnic groups have more complex tissue types than others. So, a person’s best chance of finding a donor may be with someone of the same ethnic background,” she adds.
The situation is pretty dire for the main ethnic groups in Singapore, with the chances of local patients finding a local donor being less than half for every ethnic group – Chinese: 40%; Malays: 20%; and Indians: 2%.
Priya reveals that Malays make up 8% while Indians make up 9% of the BMDP register, which means it's more challenging for patients with diverse ethnic backgrounds to find a match. In recent years, only one in three patients manage to receive their transplants from a local donor.
Equal representation is necessary, to give every patient a fair chance of finding a life-saving match. It is vital that the donor pool reflects the multicultural society we live in. This is why BMDP is making an urgent call to all eligible members of the public, especially Malays and Indians, to understand the importance of being a marrow donor and put themselves in the register.
Helping more than just a patient
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On average, the time taken from a patient's initial search request to the actual transplant is between 15 and 20 weeks. However, it's harder to find a match due to the lower number of minorities in the register, so it will take longer for minority patients. And there are also more cases where BMDP may not be able to find a matching donor for them, says Priya.
She thinks the main reason why there's isn't enough minority representation among bone marrow donors is a lack of public awareness on the topic, which has led to stigmas surrounding bone marrow donation
“Most people have the impression that bone marrow is usually taken from the spine, while others think that they are giving a part of their bone away,” she explains. “In reality, bone marrow is the soft tissue inside the bones that produces blood stem cells and during a bone marrow transplant, only the blood stem cells are donated. After knowing more about the process, we hope that more people will step forward to volunteer their stem cells to save a life.”
There are also cases where donors go through the registration process but not any further. Priya reveals that, sometimes, registered donors face objections from family and loved ones from proceeding with the bone marrow donation. She says that family objections constitute one of the top few reasons for donor drop-outs at BDMP, so they encourage family and friends to be more supportive.
“It is a challenge that the charity has been trying to mitigate for it only means dashed hopes for patients in surviving. Currently, the dropout rate is one in three and we hope to reduce this significantly,” she says.
Priya then quotes a marrow donor, Ananth – “You are not just saving a life. You are helping a whole family”.
The bone marrow donation process
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BMDP organises activities and recruitment drives as a way of educating communities about bone marrow donation and signing up new donors too. Its aim is to change perceptions and encourage more individuals to step forward as potential bone marrow donors. The number of registered donors also dropped significantly over the past few years due to the restrictions on face-to-face activities brought about by the COVID-19 pandemic.
Priya's job in donor recruitment and public education involves looking for ways to spread BMDP's mission to the public and encourage them to join its registry of donors. The team's mission is to find a donor for every patient.
“By organising awareness talks, recruitment drives and roadshows in schools and shopping malls, as well as partnering with the community sector, corporates and uniformed groups, we spread the word and clear any misconceptions the public might have about bone marrow donation,” she shares. “We recently had roadshows at Parkway Parade and Eastpoint Mall. Attending roadshows and talking to potential donors is one of the highlights of my job as I can see the impact I make.”
“Public education and recruitment efforts are being strengthened online too, such as an upcoming virtual roadshow and venturing into digital marketing so even people we have never seen before can get to know about us,” she adds.
Once you decide to become a bone marrow donor, Priya explains the steps that follow:
1. Registration
Complete a registration form, along with performing a cheek swab. The form includes the contact information of someone else that may be able to contact you in case you are uncontactable.
2. Verification Typing
If you are found to be a match, you will be called up for verification typing to confirm that you are the best match for the patient.
3. Donor Workup
You will be requested to go through a medical check-up. This is where the doctor will look at your medical history and current condition to determine if you are physically fit for the donation.
4. Donation
There are two donation methods, both of which are safe and straight-forward. The Peripheral Blood Stem Cell (PBSC) Collection involves the collection of blood stem cells from the bloodstream. The Bone Marrow Collection is another method where liquid marrow is collected from the back of the pelvic bone while the donor is under general anaesthesia.
5. Follow-up
After the donation, you will go through routine medical follow-ups to ensure you are in the pink of health.
More information about the process can be found here.
Priya is aware that the stigma surrounding bone marrow donation may hinder sign-ups. Therefore, she wants to clear the public's misconceptions and stresses the importance of explaining to friends or family members about signing up as a donor so they will be more supportive of your journey.