Appeals for bone marrow donation (and the unintended effects they can have)

It's hard not to empathize with someone who, driven by the desire to help a family member or friend who needs a transplant to continue living and who believes it effectively brings them closer to a solution to their illness, makes a public appeal through the media or social networks . However, these actions are not without controversy, so it seems appropriate to discuss their pros and cons to better understand the situation.

For many years now, there have been appeals from families of critically ill patients awaiting some type of transplant, with the understandable, though unfounded, hope of securing one thanks to the mobilization of public opinion. The types of transplants and the means used to deliver them have changed, but the phenomenon remains the same. If in the 1980s it was heart or liver patients who clamored for a solution to their problem, first through the press or radio and then through television, today the focus is on the search for bone marrow donors , usually for children, channeled through social media.

The creation of the ONT in 1989 marked a turning point in the modulation of these calls, which practically disappeared from the media in the 1990s, both due to the significant momentum achieved by organ transplants since then and the existence of an organization willing to systematically and argumentatively refute this phenomenon. Much emphasis was placed on the uselessness of these actions in resolving a specific case, since the organ donation and allocation system neither works this way nor can it be altered by any call. If someone influenced by one of these calls had chosen to donate the organs of a relative who had died at that very moment under appropriate clinical conditions, they could not do so for a specific patient, who does not necessarily have to be the most urgent, but rather for the one who was eligible according to established criteria. This is a very serious matter, the transparency of which depends on nothing less than the credibility of the entire system and, therefore, the willingness of the population to donate their organs .

Thus, the 21st century has brought a new version of this phenomenon: calls for bone marrow donations for a specific patient. While there are some similarities, the differences with organ transplants are enormous, not least because the dynamics of both types of transplants are very different. Initially, patients waiting for bone marrow don't usually have the urgency of liver , heart, or lung transplants (although it's sometimes said to be very urgent, it's never a matter of days or hours as it is with organs), so the message is more prolonged, something that is further enhanced by social media, the true protagonists of these appeals. Furthermore, what is being asked for here is not a mere figment of the imagination, as is the case with a heart, where, to donate it, the recipient must first die or have a deceased relative who will donate it. In these cases, the message is more specific: get a blood test to see if you are compatible with the patient and can donate the marrow. To properly understand what all this means, we must first explain how the search for a bone marrow donor works.

When faced with a patient who needs a bone marrow transplant, the first thing a hematologist assesses is whether, given the patient's disease type or condition, it is possible to transplant the patient with their own cells, appropriately treated ( autologous transplant ) or, if compatibility permits, obtain them from a close relative, sibling, or parent. Only if these options are not possible will an unrelated donor be sought through the Bone Marrow Donor Registry ( REDMO ), managed by the Carreras Foundation and operating in Spain on behalf of the ONT, among the more than 43 million people registered as donors worldwide. Currently, there are more than half a million potential donors registered with REDMO, making it the fifth largest registry in Europe and the 13th largest worldwide of the 103 existing registries.

The probability that REDMO will identify a suitable donor for a given patient anywhere in the world is 86% within 3 months , and the median time to do so is 27 days . It is therefore a highly efficient international system of universal solidarity , thanks to which the probability of finding a "twin brother" for a given patient is very high and is continually growing thanks to the addition of new donors around the world. In 2024, 748 patients across Spain benefited from the system, 25% with a Spanish donor and the rest from other countries. In turn, our country sent 233 bone marrows to patients around the world .

Faced with this functioning system, a specific appeal is intended to get a number of people to go to typing centers and undergo the necessary tests to see if by chance a complete identity with the patient emerges. The reality is that a suitable donor has never emerged from these appeals, fundamentally due to a mere statistical problem : we are facing the hundreds or, at best, thousands of people between 18 and 50 years old (not all those willing to donate are counted) who have responded and undergone testing, with the 43 million already registered worldwide . On the other hand, the message being transmitted to the rest of the patients is that anyone who does not make an appeal is not doing everything possible to save their relative , which, in addition to being false, is completely unacceptable.

One undoubtedly positive aspect of these calls is that the hundreds or thousands of people who have been typed are registered with REDMO and can donate to other patients in the future . However, this must be made very clear from the outset, as there have been some very unpleasant situations in which, when the time came to extract bone marrow for an unknown patient, the potential donor backed out, saying that they had only offered their services for the child in the call, but not for someone on the other side of the world.

Spanish law has prohibited these appeals for a specific individual since the 1990s. This position is widely endorsed by professionals involved in all types of transplants . However, it serves little purpose in the final analysis, as it is obvious that legal action will never be taken against anyone who promotes them for a family member or for themselves. At least it has served to modulate the messages over time, leading to the current appeal to donate bone marrow for "this patient and all those in a similar situation."

Recently, the ONT and the Josep Carreras Foundation , endorsed by all the Autonomous Communities , have published an interesting document entitled "Strategy for calls for directed bone marrow donation" , the mere creation of which shows that the problem exists and is even increasing . In fact, in the first 9 months of 2024, 15 directed calls were registered, none of which provided a donor for the patient who caused it, although in 7 of them a significant temporary increase in registrations in the REDMO was recorded.

The document presents an important change compared to the previous situation , and I believe it may be of interest in light of what has happened so far. Once the appeal has been identified, it recommends a proactive approach by both the team and the communities and the National Organization for National Development (NTO), contacting the organizers, focusing the message on general donations rather than individual donations, and even collaborating with them in disseminating the message.

We hope this new approach proves successful and helps harness all the positive aspects of these calls while eliminating all the negative aspects.