By Palesa Mokomele, Head of Community Engagement and Communication at DKMS Africa.

For many blood cancer patients, finding a matching stem cell donor for a transplant is often the biggest hurdle. Yet one of the greatest risks can emerge after a match is found, with some registered donors becoming unavailable when they are needed most, delaying treatment and adding emotional, medical and financial strain for patients and their families. Moreover, the consequences of donor attrition extend well beyond the patient’s household, creating wider costs for healthcare systems, workplaces and the economy.

Stem Cell Donor – The Emotional Toll

The costs begin with a longer wait, which carries medical risk. A study of unrelated donor transplants found that a longer confirmatory typing process, the stage at which a matched donor is contacted and retested, affected survival independently of how closely donor and patient were matched. The same research recorded two-year survival of 59% among patients with fully matched donors against 38% among those with a mismatched donor. When the best match drops out, doctors may have to proceed with a less closely matched donor or keep waiting, and neither option is one a family would choose.

The emotional toll tends to be heaviest before the transplant itself. A prospective study following transplant patients found that anxiety was most often elevated in the period before transplant, affecting 29% of patients, a higher rate than in a matched sample of the general population. The people caring for them carry a heavy share as well. Nearly 47% of caregivers reported clinically significant anxiety in the lead-up to transplant, and their distress was linked to poorer physical health and weaker coping.

What families describe to me most often is the uncertainty. Knowing a possible donor exists, but not yet whether that person will go ahead, leaves them unable to plan work, school or care arrangements around a date nobody can give them. Every donor who drops out at that stage stretches the period further, and that strain can feed back into outcomes. In a nationwide study of allogeneic transplant patients, those who had depression before transplant had lower overall survival afterwards than those who did not.

Stem Cell Donor – The Financial Strain

The question of income comes up early too. Between 20% and 50% of blood cancer patients report financial strain from their illness, including lost earnings and diminished savings to cover treatment and travel. A delayed transplant can leave a patient too ill to work for months, with no salary coming in, and the household often loses a second income as well when a parent or partner steps back from work to be at the hospital. That second loss is easy to overlook. Among parents of children newly diagnosed with high-risk Hodgkin lymphoma, researchers measured an average drop of about 9% in how much they could get done while at work, before accounting for any days they took off.

Those losses do not stay inside the household. Lost wages mean less income tax paid, and less money spent in the local economy, and when a patient does not survive, their contribution ends for good. An international study of productivity lost to premature cancer deaths across five major emerging economies found that South Africa had the highest cost per death of the group, at about US$101,000 (roughly R1.7 million). Getting patients to transplant sooner is one of the more practical ways to reduce that loss, and keeping matched donors in the search is a large part of how that happens.

The registry absorbs a cost of its own. Registering a single donor costs about R800. This is money contributed by the people and organisations who support our work because they want patients to have a chance. When a matched donor drops out, the resources invested in registering and maintaining that donor do not translate into a potential transplant opportunity for a patient.

The encouraging part is that attrition can be reduced. In research drawn from 91,479 donor requests at a German registry, donors who took part in initiatives asking them to provide an extra sample or flag periods when they would be unavailable were more than 10 percentage points more likely to be available when a patient needed them. Staying in contact with donors between registration and a match makes a measurable difference to whether they can help when the time comes.

Stem Cell Donor – The Role of Registration

That means treating registration as the start of a relationship that has to be maintained. For donors, it means keeping records up to date and regularly informed. If they have moved, changed numbers or stopped using an email address, they can update details online in just a few minutes. If their health or circumstances have changed in a way that affects whether they could donate, it is vital that they tell the search teams so that this can be planned around it before a patient is desperately waiting.

With more than 200,000 donors on the registry, the transplant team can only work with those who are able and willing to go ahead when they get the call, and every donor who keeps organisations informed brings those two figures closer together.

Source and References

Also read: Stem Cell Donors – Financing Reforms to Turn Matches Into Transplants in South Africa

https://www.dkms-africa.org/faq/who-will-cover-the-costs-of-my-blood-stem-cell-donation

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