Globally, only one out of 20 people who need an organ transplant receive it. While in countries such as the US the wait time to receive an organ is of 3.6 years, in Spain it doesn’t exceed eight months. Rafael Matesanz designed and implemented an innovative and efficient organ donation and transplantation system in Spain, placing the country at the very top of the organ donation list (with 36.0 donors per million people). Considered the most successful system in the world his model is being replicated in countries in the five continents.
After working in the Nephrology Department of a well-known hospital in Madrid (Spain) and witnessing first-hand the inefficient organ transplantation system, Rafael Matesanz identified the need for an urgent change in the model. There are two essential aspects to transplantation: the organ donation, and the transplant itself, and neither can function without the other. In this context, Rafael considered that efforts should be placed on the process of donation, understanding it as the first step to a series of actions leading to a successful transplant.
Rafael recognized that the key to achieving authorization for organ donation was in the professional who addresses the family members during the short and critical period between the patient’s brain death or cardiac arrest and the physical death. The doctor is also the first link in a delicate chain of events that result in, if everything goes well, transplant. What that professional does or says, how s/he says it and his/her knowledge on the situation are essential factors to obtain the family’s permission.
Rafael designed and implemented three core measures to ensure a systemic change in the sector:
The first measure focuses on training and empowering the doctors in charge of communicating with the potential donor’s family, ensuring their ability to communicate effectively and guide the families towards the decision to donate. The transplant coordinator is the person in charge of leading this process, and the role must be undertaken by a doctor with a great deal of enthusiasm, creativity, team spirit, strength to overcome adversity and empathy with the donors’ families. Defining, identifying and training these coordinators is the "secret" ingredient that Rafael discovered in his early years as a nephrologist and that is today the mainstay of the ONT (National Transplant Organisation), organization he leads since its creation.
The second element is ensuring a transparent, agile and rigorous management model that guarantees effective coordination from the organ donation until the transplant. Every time a donation is authorized, more than 100 people have to activate and coordinate for the process to successfully take place.
For this, the coordination network is accompanied by a management system that addresses with the utmost quality and transparency challenges such as transportation, legal matters or coordination between teams and hospitals. Furthermore, in order to guarantee the principles of equality and equity in the criteria applied to waiting lists, these are established based on two essential aspects: geographic location and clinical situation. The donation is altruistic, without any financial remuneration, and both the donor and the receiver remain anonymous.
The third measure is to have the supervising body within a public institution. Traditionally, organ donation has been promoted by external organizations, with attention placed on the transplant or awareness raising rather than the donation process. Putting the public sector in charge of the coordination system, guaranteeing transparency and fairness, gives more authority, increased credibility, and encourages higher levels of trust from the actors involved (doctors, families, patients etc.).
Globally, only 5% of people who need a transplant receive it. In the world, 120,000 transplants are carried out every year, while the demand for organs exceeds 2 million. According to the US Department of Health Data, in 2013, 120,000 organs were needed in the country and only 14.000 were obtained.
This represents a high economic cost for the health system (in many cases the patients need treatment for life), a lower quality of life for the chronically ill, and in many cases, death. The field of nephrology is particularly relevant, given that the kidney is the organ with the highest levels of transplant. Kidney disease kills 1,7 million people in the world every year and only 5% (around 63.000) receive an organ. The economic and personal costs of dialysis treatment are huge compared to the costs of a kidney transplant. In economic terms a transplant has a similar cost as one year of dialysis (around 40.000-50.000 €) but in the following years the costs drops down to minimum amounts covering only some medication and support in case of complications.
Figures show that the number of donations made in a country doesn’t depend on citizen solidarity or social, cultural or religious perceptions. There are surveys that support this fact: while more than 80% of the Swedish and Norwegian populations declare they are in favor of donating, compared to 57% of Spaniards, the number of organ donation in Spain is almost twice as much as the European average. According to data provided by the ONT, the foreign citizens living in Spain (approximately 10% of the country’s population) donate in the same proportion as the native population.
In less developed countries the challenges are usually related to the scarcity of resources, which leads to prioritizing the patient before the donor, although ultimately, the lack of an effective transplant system entails a higher cost. The logistical capacity of maintaining a patient clinically alive during 6-12 hours, enough time to extract the organs before physical death, is also a challenge in these countries. Less developed countries have extremely low donation figures, such as Malaysia (0.7 per million), Tunisia (0.8) or Dominican Republic (2.8).
On the other hand, countries with sufficient economic and technical resources don’t always have the necessary mechanisms to facilitate organ donation as is the case of New Zealand (10.0 donors per million), Denmark (14.3) or Germany (10.4). Efforts are often placed on raising citizens’ awareness, and ignore the relevance of the doctor’s role to inform the family on the importance their authorization. In other cases, the issue lies in the profile of the selected coordinator, who instead of being a doctor is a technician or nurse. This is often less effective, since doctors have a better knowledge of each patient’s organ donation potential, and are able to better convey the details and knowledge around the patient’s medical status.
Although legislation is not a core aspect of the donation system, except in extreme cases where laws explicitly hinder organ donation, there are two main legal approaches: countries, such as Spain, who are traditionally catholic and/or in southern Europe, generally work with a law of “presumed consent”, in which everyone is considered a donor unless they specifically state otherwise; and northern or Scandinavian countries that generally opt for “informed consent”, where a person is an organ donor only if explicitly specified. In reality, in both cases the ultimate decision lies on the family, making the legislation non-decisive in terms of organ donation. There are certain countries, however, with legal limitations to donation, as is the case of Japan, that doesn’t recognize brain death as official death, making organ donation almost unfeasible.
Rafael defined the profile and criteria for transplant coordinators in hospitals across Spain and set up a network and management model that engages all stakeholders involved in the donation/transplantation process. His system has reduced the rate of rejections from donors’ families to 15% compared to the 40% average in Europe. These figures represent a huge difference between the number of donors in Spain (36.0 per million, the highest in the world) in relation to other countries or regions: USA (26.6), Australia (16.0) or the European Union (19.7).
Although social innovation in the health sector nowadays is generally applied by empowering the patient, Rafael’s strategy focuses primarily on the doctor:
Organ transplantation consists of a long chain of actions, and the weakest link is the organ donation and the key to it is the coordinator. In this context, Rafael implanted the establishment of a designated transplant coordinator in every hospital (not only those who carry out transplants, but also those who assist potential donors) and defined the required profile: the coordinator would have to be an internist (emergency physician) who can accurately identify potential donors, who combines medical practice with coordination (to avoid converting them into mere “intermediaries”) and who rotates every 3 years, as experience shows that the level motivation directly affects the number of family authorizations obtained.
His main role today as the implementer of this model is that of updating, optimizing and adapting the training provided to the medical professionals to ensure that they know what to do and say to the families in order to reach their consent, focusing specifically on developing their ability to listen, empathize and transmit the importance of the donation. Approximately 300-400 doctors are trained every year, including aspects such as potential donor identification, maintenance of the donor, how to approach the family and how to distribute the organs. To date, the ONT has trained over 15.000 professionals, both as coordinators and/or collaborators of the donation process, all around the world.
A high donation rate leads to a large number of transplants (only in the first semester of 2015, 2,678 kidney and 265 heart transplants were carried out in Spain), which in turn means that the technique is constantly improved and perfected, reaching impressive results. For example, the difference in survival rate 10 years after a kidney transplant between USA and Spain is of 20%, in favor of Spain. On the other hand, this generalized increase and access to organ transplantation has helped shift the perception among the Spanish population, who today consider transplant a right.
In 1992, the ONT started reinforcing its influence at international level with the objective of expanding the Spanish model through conferences and publications, and by advising governments in other countries, especially in southern Europe and Latin America, on how to implement the system locally. Croatia, one of the countries that replicated the model, is now the second country in the world with highest rates of donation, closely followed by Portugal, another adopter of Rafael’s model, ranked 5th globally. In Uruguay and Argentina, where the ONT carried out intensive training with doctors, donor rates increased from 5-6 per million to 26, and from 6 to 12, respectively. Other countries, such as the UK, Australia or the US have applied several of its elements to their own processes.
Currently, the ONT is working closely with the Transplantation Society and the World Health Organization to replicate the model across the 5 continents, and collaborates with these agencies to fight against organ trafficking in countries such as Philippines or China. Rafael is one of the main architects of the European Transplant Directive, approved by the European Parliament in 2010 after a swift discussion and drafting process.
Coming from a humble background, Rafael Matesanz (Madrid) studied Medicine with a scholarship granted by a public university in Spain. During his internship period he witnessed a transplant for the first time, which he considered a “miracle”, encouraging him to direct his career towards nephrology.
Rafael specialized in the sector with the highest number of transplants in the world, providing him with years of experience in transplantation. This, along with his reputation in the medical world (he was also editor of the “Nephrology” magazine) and of his proven excellence in management after 4 years as director of INSALUD (Public health institute), led to his role as the national transplant coordinator, a previously inexistent position, created as a response to criticism for the lack of organization in the transplantation system.
Rafael insisted in the creation of a new system within the public administration with a real and efficient coordination model, which led to the creation of the ONT. Today, the agency has the dual aim of promoting and structuring both the donation and the transplant processes.
His first steps as national transplant coordinator sought to solve all kinds of problems in the sector, both big and small, from logistics to communication or legal matters. He carefully analysed the sector, spoke with the professionals involved and tried to find solutions applicable to the majority. His methodology soon started to show results, and was followed by an initial group of early adopters, mostly from the area of nephrology. Through an approach of respect and dialogue, Rafael eventually built a coordination model undertaken by all.
Rafael has led the ONT since its creation in 1989, with a 3 year break in which he moved to Tuscany in the North of Italy to implement a regional coordination transplantation model similar to the Spanish one, increasing fourfold their donation rates: from 9-10 donations per million to 42. For 7 years (1995-2000 and 2003-2005) he was the President of the Transplant Expert Committee of the Council of Europe and since 2005 he is the Chair of the Iberoamerican Council of Donation and Transplantation.
Today, Rafael is a worldwide reference in organ donation, having received among other recognitions, the prestigious Príncipe de Asturias Award in 2010.