LIFESTYLE NEWS - When a registered stem cell donor becomes unavailable after being matched with a patient, the consequences can extend far beyond a delayed transplant. For South African families facing blood cancer, it can mean prolonged uncertainty, additional financial pressure and potentially fewer treatment options.

Palesa Mokomele, head of community engagement and communication at DKMS Africa, says donor attrition remains a significant challenge in the search for suitable stem cell donors, with consequences for patients, their families and the wider economy.

Finding a compatible donor is often one of the biggest hurdles for people who need a stem cell transplant. However, securing a match does not guarantee that the transplant will proceed. Some registered donors are unavailable when they are needed, forcing medical teams to consider other donor options or continue searching.

Delays carry medical and emotional costs

Research into unrelated donor transplants has found that delays in the confirmatory testing process, when a potential donor is contacted and retested, can affect patient survival independently of the degree of donor matching.

One study recorded two-year survival rates of 59% among patients who received transplants from fully matched donors, compared with 38% among those with mismatched donors.

When a matched donor withdraws, doctors may need to consider a less closely matched donor or continue the search. Both options can add pressure to an already difficult treatment journey.

The emotional strain is also considerable. Research tracking transplant patients found that anxiety was elevated in 29% of patients before transplantation, while nearly 47% of caregivers reported clinically significant anxiety during the lead-up to the procedure.

For families, uncertainty about whether a donor will proceed can make it difficult to plan work commitments, schooling, travel and care arrangements. The pressure often extends to relatives who take time off work to support a loved one through treatment.

Studies have also linked depression before an allogeneic stem cell transplant, in which stem cells come from a donor, with lower overall survival afterwards.

Financial pressure extends to families

Blood cancer can place a substantial financial burden on households, particularly when patients are unable to work for extended periods or need to travel for treatment.

Research suggests that between 20% and 50% of blood cancer patients experience financial strain related to their illness, including lost earnings and reduced savings.

A delayed transplant can prolong this pressure. Patients may lose income while in treatment, while a partner or parent may also reduce working hours or leave employment to provide care.

The effects can be felt in the workplace, too. Research involving parents of children newly diagnosed with high-risk Hodgkin lymphoma found an average decline of about 9% in their ability to get work done, even before accounting for time taken off.

These losses can have wider economic consequences through reduced household spending, lost productivity and lower tax contributions.

An international study examining productivity losses associated with premature cancer deaths across five major emerging economies estimated the cost per death in South Africa at approximately US$101 000, or about R1.7m.

Reducing avoidable delays in reaching transplantation is one way to help limit the impact, with donor availability playing an important role.

Donor registration is only the beginning

Maintaining a donor registry also requires resources. According to DKMS Africa, registering one stem cell donor costs about R800, funded through contributions from individuals and organisations supporting its work.

When a matched donor is not available, the resources invested in registering and maintaining that donor do not result in a potential transplant opportunity for the patient concerned.

However, research suggests that donor availability can be improved through better communication and ongoing engagement.

A study drawing on 91 479 donor requests at a German registry found that donors who participated in initiatives to provide additional samples or indicate periods when they would be unavailable were more than 10 percentage points more likely to be available when a patient needed them.

The findings point to the importance of maintaining contact with registered donors between the time they sign up and the day they may be asked to donate.

Keeping donor details up to date

For registered donors, remaining contactable and communicating changes in their circumstances can make a meaningful difference.

Donors should ensure that their contact details remain current, particularly if they change their telephone number, email address or residential address. They should also inform their registry if changes in their health or personal circumstances could affect their ability to donate.

This allows donor search teams to establish availability as early as possible and plan accordingly, rather than discovering a problem when a patient is already waiting for a transplant.

With more than 200 000 donors on its registry, DKMS Africa says the ability to connect patients with donors who are both available and willing to proceed remains essential.

For patients facing blood cancer, a registered donor represents more than a name on a database. It represents the possibility of a life-saving transplant. Keeping that possibility open requires donors to remain engaged and to communicate honestly when their circumstances change.

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