For patients in ÂÜÀòÊÓÆµ with complex blood disorders, a stem cell transplant is often the only cure.
Only a donor can provide the healthy stem cells needed to replace diseased marrow and allow the body to carry oxygen, fight infection and stop bleeding. Without this, many patients with various blood cancers remain untreatable or quickly relapse.
Family members are typically tested for donation first, but even then, a perfect genetic match is found only about one-third of the time. For the majority, unrelated donors are their only chance.
To meet this need, the Ministry of Health established the Saudi Stem Cell Donor Registry (SSCDR) in 2011 to connect patients with donors when family matches are not available.
The SSCDR has grown to more than 80,000 volunteers, as of 2023, but the numbers remain far below what is needed.
A study of 445 Saudi patients showed that only 24 percent found a fully matched unrelated donor within the registry, and even after searching through international databases, the total chance of a perfect 10/10 match rose only to 36 percent.
In contrast, patients of European ancestry in countries such as the US and Germany routinely have a 70 to 75 percent chance of finding a fully matched donor in their national registries.
If the criteria are relaxed to incomplete 9/10 or 8/10 matches, the chance for Saudi patients increases to more than 80 percent, but these transplants carry higher risks of complications and mortality.
The difference is not because our patients are harder to treat, but simply because our donor base is too small.
Researchers say nearly 1 million registered donors are needed to give every Saudi patient a fair chance of finding a full match. At present we are less than a 10th of the way there.
This shortfall means many patients face the heartbreaking reality of not finding a donor in time, a reality that can be changed only by expanding the donor registry.
Joining the SSCDR registry is straightforward. First, general health data is collected from the potential donor in a questionnaire.
Second, either a blood sample or a cheek swab is taken to identify the human leukocyte antigen and lastly, the results are added to the SSCDR database.
Registration is free, confidential, and takes only minutes. A kit can even be mailed so a cheek swab can be done at home without visiting the hospital.
Once registered, your tissue type is stored in the Saudi database and linked with international registries, increasing the chances of finding a match for patients both in the Kingdom and abroad.
If a donor is later identified as a match for a patient, they are contacted when that patient is in urgent need.
At that point, the hospital team explains the procedure in detail and performs a full medical examination to ensure safety and readiness. The donation itself is safe and carried out under medical supervision.
In most cases, it involves peripheral blood stem cell collection: after several days of injections to mobilize stem cells into the bloodstream, a machine separates them over a few hours while the rest of the blood is returned.
Less commonly, bone marrow is collected under anesthesia from the pelvic bone. In both cases, the body replenishes stem cells within weeks, and donors quickly return to normal life.
The fight against life-threatening diseases is not just a medical challenge; it is a collective human mission.
Every additional person who joins the registry helps close the gap between blood disorder patients and their chances of survival.
It is unacceptable that a child in Riyadh or Jeddah should have lower odds of finding a donor than a child in Boston or London.
The science is here, the infrastructure is here, but what is needed most is participation. A cheek swab may take only minutes, yet for a patient waiting for a match, it can mean decades of a healthier life.
• Sarah Haque is a medical student who conducts public health research and awareness campaigns.
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