Organmeetings_When knowledge and information help give life a second chance by Onassis Stegi

Οrgan Meetings

Α comprehensive guide on organ donation and transplantation

When knowledge and information help give life a second chance

If you represent any media, public or private body, association or if you are interested in linking the CRS policy of the company you work for, with awareness-raising about Organ Donation and Transplantations, visit www.onassis.org and fill in the relevant form available in the Health section, in order to participate in the Organmeetings information program organized by the Hellenic Transplant Organization (HTO) and the Onassis Foundation. For more information contact us at: mediaoffice-health@onassis.org

Organ donation through the eyes of a mother who donated the organs of her 17-year-old daughter IOANNA SARRI-BALASI

“February 2020. For six months, we were in and out of Heraklion University Hospital. Going between our home and the hospital had become our life. The last time we were admitted was in mid-January. We never left the side of our daughter, Nektaria. I cannot forget the last words she told me, lying on her hospital bed: “Mum, can you massage me a little? My neck hurts,” she told me. She turned around, looked at me, closed her eyes and that was the last contact we had.

temporarily lost her eyesight. There was something wrong with the valve. Nektaria had to go into surgery. At first, she responded very well. But soon there were complications. The physicians told us that Nektaria suffered every possible complication mentioned in the bibliography. It was Thursday, at the crack of dawn, on Nektaria’s birthday when the physicians told us she was not going to make it. On February 10, she was pronounced brain dead. We couldn’t believe it. We never thought this would happen. I often get asked how come my husband and I found the strength to donate Nektaria’s organs. I realise now that this was a decision, a point of view and a stance that had been brewing in us for years. I first considered the idea of organ donation in 2016, when I decided to become a registered bone marrow donor. This image from a documentary I watched has stayed with me. A young child suffering from a serious illness is on a transplant waiting list. One day, the hospital calls to say that a donor has been found and asks the child to come in. The look in the child’s eye, the joy knowing that life could start again, that there was a way out of the permanent quarantine his life had become, all of this just stuck. Our relatives and friends stayed up with us outside the ICU, sleeping in chairs. When the sad news arrived, “We

She was only a 50-day-old baby when they placed a valve in her head following a brain hemorrhage caused by something she caught in the Neonatal Intensive Care Unit. A fighter from the very beginning, and no stranger to the ICUs. A fighter from the day she was born till the day she died. While she was with us, she was they joy of our life. A very giving, happy, active child. She took up martial arts, ballet, participated in competitions and always tried for the best. She loved life, and each one of her choices made that even more obvious. And ever so giving. The serious medical problems appeared when she turned 16. She started losing control of her limbs, having trouble walking and suffering from vertigo and headaches. On 1 August 2019 she Photo credit: Christos Tsoublekas

“Contrary to the conspiracy theories some people believe in, ICU physicians will do everything in their power to save the patients. They are not just out to get their organs. This is not how things go. Besides, organ donation is not a simple process”

“We “We will donate her organs.” When it was my turn to be the consenting parent, and my child’s turn to be a possible donor, my response was immediate. This is what Nektaria would have wanted.

phone rings and a family finds out that a donor has been found. It could be a young man, a mother or a father who needed a transplant. It could be a person close to us. Out of sheer coincidence, we happened to meet one of the donors. His name is Achilleas and he received our daughter’s liver. I don’t know who the others are who received the organs. It doesn’t really matter, in the end. And, quite frankly, it is probably for the best that the donor’s family is not allowed to get in touch with the transplant recipient. People might get dependent on each other. It is stressful to think that the person who has your child’s lungs might take up smoking, or that the recipient of your daughter’s heart is riding on a speeding motorcycle. It is as if the life she gave is being taken away. So, you end up thinking, as long as they are well and saying a prayer for my child, that is enough, wherever they might be. For us it is a great comfort that they are all alive thanks to our daughter”.

My child lives on, in the bodies of five different people. Five families get to spend holidays together, kiss each other goodnight and continue their lives, all thanks to my Nektaria. Nothing was wasted. I keep thinking that organ donation gave us the chance to honour the efforts of the physicians and nurses who were fighting by my Nektaria’s side for months on end. The physicians at PAGNI hospital fought a fierce battle. For them, my daughter was “their Nektaria”. Contrary to the conspiracy theories some people believe in, ICU physicians will do everything in their power to save the patients. They are not just out to take their organs. This is not how things go. Besides, organ donation is not a simple process. A simple thank you is not enough to pay back the efforts, the sleepless nights and the surplus of love all these people gave us. It was necessary to find a way for Nektaria to keep on living. For us, this is very comforting. There are nights when I sit at home, close my eyes, and visualise that somewhere, in another house, a

Interview by Andriani Aggelidaki

Why Organ Donation concerns us all Did you know that it is more likely for us to need a transplant due to organ failure than to become an organ donor?

In the United States, every 10 minutes, someone joins a waiting list for a transplant of one or more solid organs.

On a global level, transplantation is fast becoming the most advanced medical practice of the 21st century. It is the only treatment available for end stage heart, liver, and lung failure as well as the most effective solution against kidney failure. Unfortunately, in this area Greece ranks last among European countries and is one of the ten countries with the lowest number of transplants in the Western world.

In Europe, the situation is no better. Even though 35,529 patients have been transplanted in 2021 41,152 were added to the waiting lists - this means approximately 6 new patients per hour. These people could be our relatives, someone we love or even us.

However, in order to be given a second chance in life it is important to understand the value of organ donation. More than a simple act of solidarity towards our fellow citizens, organ donation is first and foremost an attitude which, if adopted by all, in the end will benefit ourselves, our relatives, and all those near us.

Our lifestyle and diet, stress, smoking and other aggravating factors result in an increasingly higher demand for solid organ transplants.

A single solid organ and tissue donor can save 7 lives and improve the quality of many others. There is no need to wonder what your options are. Just flick through this leaflet and start considering and discussing the matter, first by yourself and then with the people you hold dear. 5

Source: www.edqm.eu/en/eodd www.organdonor.gov

Coordinating a battle for life

DESPOINA CHILIDOU The Chief Nurse - Heart and Lung Transplant Coordinator of the Onassis Cardiac Surgery Center (OCSC) and her team act as the link among the OCSC, the Hellenic Transplant Organization and the hospitals where transplants become available. They are the link connecting patients and physicians; but also, the nexus leading from anxiety to hope for a second chance in life.

Interview by Andriani Aggelidaki Photo credit: Nikos Kokkas

Despoina Chilidou describes her job and the difficult role she needs to play in the following terms: “What do we do, exactly? To begin with, we need to be on call 24/7, 365 days a year, to ensure that the process will run smoothly and to come up with solutions for any problems that may arise once a transplant has become available. My team and I are the heart and lung Transplant Coordinators. We work at the Onassis Cardiac Surgery Center, monitoring patients on the transplant waiting list as well as lung and heart transplant recipients around the clock, every single day of the year, day, and night, on weekdays and on holidays. Transplant Coordinators are, for example responsible for setting the process in motion once they are notified by the Hellenic Transplant Organization that a donor has been found. The recipient needs to be notified, the hospital prepared, and the transplantation carried out as soon as possible.

numbers of their relatives, the people closest to them. Everybody knows, everybody is informed, everybody makes sure their mobile is always charged and has reception, and everybody tends to practical matters which can end up saving the life of their loved one. We have seen patients leave the unit standing, grow up, get married, have children, or see their own children grow up and move on with their life. The first transplant recipient to be operated at the Onassis Cardiac Surgery Center, in 1996, is still alive, now an elderly man, and is still monitored through the program. Whenever he needs something, we are here for him. He has regular checks and tests monitoring every aspect of his physical as well as psychological health. We create bonds for life with our patients. They share with us all the most important moments, their anxiety, their disappointment but also their joy once a transplant has been found. We are constantly by their side.

Our job is very stressful, but we are trained for it and always know which is the next step. Fatigue, stress, and intense emotions don’t get the better of us. We always act with the recipients in mind. Our job is to look after these people; to make them feel optimistic and safe. A new path lies ahead for them. Within the next hours, they may be reborn. This is the biggest achievement of all, and it is what drives us forward. This is what motivates us to come up with solutions for everything. When a human life is at stake everybody is willing to help, as long as you explain what they need to do. This is true even for people who know nothing about transplants, as is the case for those working outside hospitals -the police, traffic wardens or airport workers. I have been witnessing this every single day since 1996, when I first started working as a Transplant Coordinator.

There is this image of a patient that has stayed with me since 2002. A 25-year-old girl, it’s a miracle she’s still alive. She had end stage dilated cardiomyopathy and was in the ICU in a critical condition. She was in such a bad state she suffered a cardiac arrest on the way to the operating table. Thankfully, a transplant was found for this girl. It was a miracle that she managed to win her life back. A miracle that came true thanks to the efforts of everyone involved. Our team and the fact that the process was well-coordinated was what made the miracle happen. I remember supporting her so she could walk to where we were throwing a little farewell party for her just before she left the hospital. But what we also need to stress is that the donors and their families are the ones who save lives. That is why our patients, the organ recipients, often ask us to just give them the first name of their donor so they can pay tribute, say a prayer for him or her. They want to pay tribute to their saviour.

Every day, donors and transplant recipients teach us something about life. They teach us what truly matters in life, what needs to be prioritized and how important it is to offer something to others. Only childbirth and organ donation can give life. Through organ donation life gets to be passed on. The most convincing argument for organ donation is the recipients themselves, who get to be born again. It might be a relative, a friend or even us. Because, in the end, organ donation concerns everyone and not just a few people. Patients with end stage heart or lung failure put their life on hold and spend their day by the phone waiting to hear that a transplant has been found. We even have the phone

The statistics that hurt: It’s not about numbers, it’s about the people behind them.

140,000 is the approximate

number of patients registered in the waiting list for one or more organs in 2021.

1,200 patients are on a waiting list for

an organ transplant while 11,500 patients are on dialysis. Among the latter, many are those who do not get on their national transplant waiting list either because they are not aware that transplantation is a possible course of treatment or because they are discouraged by the long waiting times.

6 new patients are added every hour on

an average to national waiting lists across Europe.

1,350

In total, patients in Greece are on waiting lists for one or more organs.

By March 2023,

21,800

donors had been registered in the Organ Donor Register.

of our fellow humans in Europe die every day while waiting for a transplant.

5 donors for every

1,000,000 residents based on the average number of transplantations in Greece, when the equivalent number of donors is

48 40 33

in Spain in Croatia and in Portugal.

Source: HTO

The two parallel paths of the transplantation chain RECEIVING ORGANS AND TISSUES • Once a patient has been diagnosed with end stage organ failure, they referred to a Transplantation Unit dealing with that organ. At the Transplantation Unit, the patient’s name is entered to the National Register of Candidate Organ Recipients, which is kept by the HTO.

compatibility between donor and candidate, waiting time, age, bodily dimensions and, finally, the severity of the patient’s medical condition as attested by the physicians. • Priority lists are produced by a specialised HTO software that cannot be tampered with. After that, the HTO lets the relevant transplant centers know who the best candidates for every organ are, based on the criteria listed above.

• Once a donor appears, the HTO begins the process of coordination which will be completed once all organs have been allocated and the matching recipients notified.

• The chosen recipients then come into the transplant center where they are submitted to the necessary pre-transplant tests before moving on with the procedure that will give them a second chance in life.

• Each organ is allocated individually to one of the candidate recipients figuring on HTO’s list based on strict international medical criteria, such as: blood type, tissue

OFFERING ORGANS AND TISSUES • When patients come to the hospital in a condition serious enough to have to be placed in an Intensive Care Unit, physicians will do everything in their power to save their life.

• If the deceased patient had neither registered as a donor nor opted-out, then the hospital’s Transplant Coordinator or the treating physician will inform the family about the option of organ donation.

• If a patient dies in the Intensive Care Unit, only then will the physicians get in touch with the Hellenic Transplant Organization.

• If the family consents to organ donation, the next step is to conduct the required clinical and laboratory tests, check if the organs are suitable for donation and, if the results are positive, procure the deceased person’s solid organs and tissues with the utmost respect and care for the donor’s body.

• The Hellenic Transplant Organization will then check whether the deceased patient has registered as a donor or non-donor and will notify the hospital. 9

When the ICU becomes a link in the chain of life ADAMANTIA SOTIRIOU

Intensivists play a pivotal role in the organ donation process. Adamantia Sotiriou, Pulmonologist/Intensivist and Senior Registrar at the 1st University Hospital Intensive Care Clinic of the National and Kapodistrian University of Athens, at Evangelismos Hospital, is also the Hospital’s Transplant Coordinator. She is a vital link in the chain of life. How common is organ donation and transplantation in a big hospital like Evangelismos where there are many serious patient cases every day? Several kidney transplants and frequent bone marrow transplants are performed at Evangelismos. Transplantation is therefore rather common in the hospital. What is less common, however, is organ donation and especially so from a deceased donor. As a concept it exists but as a clinical practice and everyday reality it is far from widespread in a big general hospital like Evangelismos. The consistently high workload, the volume of patients a hospital of this kind receives as well as the well-known problems of the Greek healthcare system are not making things any easier. Organ donation is a difficult process which needs to be carried out within the ICU very quickly after brain death has been established. The process presupposes the availability of an ICU bed, extra working hours and the mobilisation of the entire hospital mechanism not, in this case, in order to save the patient’s life but in order to save other lives through the deceased. All this needs to be pursued while caring for other patients in the ICU who rely on our help to fight for their lives. However, whether we are dealing with transplantation or with organ donation the mechanism is activated promptly, and the support of the hospital staff is continuous and admirable. How do you explain the consistently low rates of organ donation in Greece? These low rates can be interpreted in many ways. To begin with, insufficient information and/or misinformation over what it means to be pronounced brain dead is, in my opinion, one of the main explanations. Many of our fellow Photo credit: Nikos Kokkas

citizens confound brain death and coma, which is a completely different situation. Brain death occurs as a result of a devastating and irreversible brain damage and equals physical death. A coma, on the other hand, is a serious disruption of the brain’s function with a different degree of reversibility, which does not affect the vital centers of the brain (respiratory, cardiac). The second explanation is the fact that people mistrust the healthcare system, as it is the case with other public entities and structures. As a phenomenon, this has been observed not only in Greece but also in countries where the level of healthcare services is presumed to be very high. One of the main claims put forward by people who are afraid to register as organ donors is that if the treating physician at the ICU knows they are organ donors, then the level of care provided will be inferior. What would be your answer to a citizen who expresses this fear? For someone to become an organ donor, brain death needs to be diagnosed based on a certain set of criteria. These have been clearly defined, scientifically established and legally entrenched since many years. Brain death is caused by serious health conditions or brain injuries which scientific knowledge and medical care cannot reverse. Not all seriously ill or injured patients ending up in ICUs qualify as organ donors. Being a registered organ donor is not all it takes to actually become one. The Hellenic Transplant Organization is the only entity in possession of this information, and the only thing declared through the registered donor’s action is the person’s intention to donate organs provided the required conditions are met. How difficult is it to talk to the family of a deceased patient about the prospect of organ donation? Have you ever felt uncomfortable? This is an extremely important and difficult process, which starts even before brain death has been pronounced. The starting point is when the patient arrives at the ICU. Communicating with the relatives of our patients, especially when the news is bad, is something very complex for which we have not been trained during our medical studies. For my part, I have attended seminars on psychology and other subjects from the humanities in order to be able to communicate with my patients’ families, and have learned a lot about my everyday practice as an intensivist. Announcing brain death makes people overtly emotional, and this is something I always

find difficult. However, the prospect of organ donation may help ease the grief of the family. Provided the condition of the deceased is irreversible and the conditions are met, this is one chance to offer to others the greatest gift of all: the gift of life. This is the thought that keeps me going too. What needs to change in Greece for your work to improve and organ donation rates to increase? Awareness raising would be key. The media and social networking platforms have the biggest part to play when it comes to awareness raising. Awareness should be raised among healthcare professionals as well, in order for them to support organ donation. The role of the Transplant Coordinator, patterned after Spain which is the country with the highest rate of donors per million population, has been successfully introduced in the last few years but it needs to be strengthened. The Transplant Coordinator should not be a physician or nurse also charged with other duties. This position is extremely important and requires dedication, long working hours, and constant availability. The Transplant Coordinator’s responsibilities begin with identifying a patient as a potential donor and include also patient management in the ICU and handling the communication with the family both during and after the process has been completed. This would also facilitate the job of ICU physicians, who have been filling the position up to now. Finally, I think it is necessary to support the hospitals which help advance organ donation and transplantation both financially and with extra staff, in order to foster continuous training and research in this field, which will ultimately lead to an improvement of the services provided.

Transplantation: the dawning of a new era

The Onassis Foundation has undertaken a National Initiative aimed at rebuilding this sensitive sector

Photo credit: Christos Sarris

The Onassis Foundation furthers awareness raising, through programs that inform citizens, parents and students and familiarise them with organ donation To find out more visit www.onassis.org

Following its vision to reconstruct the landscape of transplantations, but also to develop and enhance the organ donation culture in our country, the Onassis Foundation undertook a National Initiative, in collaboration with the Hellenic Transplant Organization (HTO) and the Onassis Cardiac Surgery Center (OCSC). Despite the occasional awareness campaigns and isolated efforts made within the healthcare system, organ donation in our country remains substantially limited. The waiting list of patients in need for a transplant is long and chances that one of them receives the longed-for transplant are quite thin. Ignorance, prejudice, and an inhospitable health system emerge as the defining factors inhibiting transplantation in our country. Adopting a holistic approach in its planned activities, the Onassis Foundation supports the work of the State as well as that of the HTO and contributes to the reconstruction of the field of transplantations.

Invests in infrastructure by building the Onassis National Transplant Center right next to the Onassis Cardiac Surgery Center; secures state-of-the-art medical equipment for both hospitals and turns them into fully digital hospitals.

Fosters training and helps healthcare professionals further their scientific development through scholarships and webinars and supports medical research.

Helps the restructuring of the healthcare system, by handing over to the Greek State the National Plan for Organ Donation and Transplantation (July 2021).The report was prepared by an international research team headed by two distinguished Professors, Elias Mossialos and Vassilios Papalois, and serves as the basis for the new legislative framework for organ transplantation in Greece. In addition, for a period of 3 years the Onassis Foundation will cover the salaries of 7 Transplant Coordinators placed in 7 hospitals across Greece, until the State is able to permanently tackle the shortages of the healthcare system.

Disseminates information by developing programs designed to familiarize the public and raise awareness among citizens, parents and students, such as the “Orgamites” educational program addressed to primary school pupils; organizes seminars, conferences and workshops for healthcare professionals and associated entities; holds information sessions for public organizations, media Groups and businesses, always under the supervision of the HTO and in collaboration with its scientific team through the current Organmeetings program.

Onassis National Transplant Center

The “home” of transplantation will be ready by 2024

A longtime vision of the Management of the Onassis Foundation is coming to life through the Onassis National Transplant Center (ONTRC): to offer the Greek society an organ transplantation hospital that will also serve as a transplantation research and innovation center.

with cutting-edge technology budgeted at €30,000,000. Moreover, an independent paediatric transplantation clinic, the Onassis Children Hospital, will offer specialised high-level paediatric cardiology and paediatric surgery services to children, reducing the need to go abroad for transplants.

The ONTRC is expected to act as a catalyst in the development of transplant activity in Greece, as it will support a national network of transplantation.

With state-of-the-art infrastructure, cutting-edge technology, specialised staff and in cooperation with other transplant centers, it will create an integrated framework for each and every patient, even those with no health insurance.

Under the State’s coordination and supervision, through the HTO, it will conclude partnerships with physicians abroad, who will share their know-how with the newly founded Center.

A hospital for all.

The total budget for the project will amount to €100,000,000. The ONTRC will be equipped

Photo credit: Giannis Soulis

Τhe Onassis Children Hospital will offer high-level services specializing in paediatric cardiology and paediatric surgery

Core principles:

The premises:

7,000 sq. m.

• Care for all patients and their families with the utmost respect

4 floors

• Quality and innovation in healthcare

48 new beds

• Health for all

12 ICU beds for children, of which

• Care even for non-insured patients

5 exclusively for infants

• Accountability and integrity in the performance of medical duties • Cooperation towards achieving a joint vision

National Plan for Organ Donation and Transplantation

Greece welcomes an institutional framework for an integrated transplant policy

Almost 30 years ago, the creation of the Onassis Cardiac Surgery Center by the Onassis Foundation transformed the healthcare landscape in our country. Today, the Onassis Foundation aims at transforming the healthcare landscape in Greece once again, adopting a holistic approach and leaving its mark in the field of solid organ donation and transplantation. Through a National Initiative, it builds new infrastructure for transplantations, invests in innovation, boosts the National Health System structures, helps develop scientific research and carries out citizen information and awareness-raising actions.

an institutional framework for an integrated national transplant policy is necessary for the operation not only of this specific hospital, but of the entire Greek donation and transplantation network.

Our efforts focus on the creation of the Onassis National Transplant Center (ONTRC), a cutting-edge transplant center that is open to everybody. Its delivery to the Greek State is expected to happen in 2024. However, infrastructure alone is not enough to elicit change in the transplantation landscape in our country. Further actions are required; actions that will provide a solid foundation for the rebuilding of this sector. First of all,

On Tuesday, 6 July 2021, the Onassis Foundation delivered the report on the National Plan for Solid Organ Donation and Transplantation to the Greek State and the next step was to make it an official law of the State, which happened in March 2023. It is a pioneering scientific piece of work at a global level, an outstanding and comprehensive report that will serve as the roadmap for transplantations in Greece in the coming years.

In this context, two years ago, the Onassis Foundation, having first assured cross-party consent, assigned the elaboration of the report on the National Plan for Organ Donation and Transplantation to a team of distinguished Greek and foreign scientists from the London School of Economics (LSE) and Imperial College London headed by Professors Elias Mossialos and Vassilios Papalois.

THE REPORT The report on the National Plan for Solid Organ Donation and Transplantation in Greece includes a framework of rules and best practices in line with international standards, which can function as a national health plan. The Plan specifies:

The National Plan for Solid Organ Donation and Transplantation provided, among others, for the following: • strengthening of the Hellenic Transplant Organization and its role and nation-wide deployment; • boosting the available infrastructure; • special reimbursement for healthcare staff; • Transplant Coordinators available in all hospitals with ICU; • education and certification of Coordinators as per the European standards; • use of telemedicine technology and electronic health records to facilitate the follow-up of patients who live in remote locations.

• the State’s necessary strategy both for treatment and prevention; • the role of the Hellenic Transplant Organization; • the role of the Onassis National Transplant Center as well as the role of other transplant centers in the country; • their needs in infrastructure and in general; • training methods for specialised staff; • the trends of public opinion towards transplantation and the role of mass media.

Photo credit: Andreas Simopoulos

6 July 2021: The President of the Onassis Foundation, Anthony Papadimitriou handing over the National Plan for Solid Organ Donation and Transplantation to the Prime Minister, Kyriakos Mitsotakis. A two-year research effort, led by Professors Vassilios Papalois and Elias Mossialos, has now come to an end, creating a comprehensive operating framework for Organ Donation and Transplantation in Greece. 17

Orgamites

An innovative educational programme promoting healthy living and organ donation

AN EDUCATIONAL PROGRAMME UNDER THE SCIENTIFIC AUSPICES OF THE HELLENIC TRANSPLANT ORGANIZATION AND THE MINISTRY OF HEALTH, WITH THE SUPPORT OF THE ONASSIS FOUNDATION. “©The Orgamites is an All Good Co. (CIC). Created by Roydon Turner. ©Copyright, Creative Direction and Production by Awesonova. All rights reserved.

“Orgamites”, a unique, innovative and interactive educational program addressed to primary school pupils aged between 7 and 11, is part of the Onassis Foundation National Initiative for organ donation and transplantation. Upon suggestion of the Hellenic Transplant Organization (HTO), the Onassis Foundation secured the exclusive rights and undertook its promotion and dissemination in Greece, under the scientific auspices of the HTO.

This educational program, which started from England and has already traveled to Scotland and Canada, has now come to Greece in order to inform us what we can do to look after our health and teach us all about organ donation. With a view to informing and raising awareness amongst children, parents and teachers, “Orgamites” is part of the Actions-Measures and Primary Healthcare Programs developed by the Ministry of Health, and since the 2021-22 school year it has been included in the ΧΙΧ thematic area, titled: “Promoting Organ Donation and Transplantation to children and teenagers”.

The program is aimed at encouraging children to become the “captains” of their own health and help them understand in an easy and fun way the importance of organ donation and transplantation, triggering at the same time family discussions on these issues. Which are the organs in our body and how do they function? What should we do in order to take care of our health? How big is our heart and which one of our organs is able to “reproduce” itself? What happens when one of our organs does not function properly? How can a physician replace this organ with a different one? Tough questions like the above become entertaining stories through the Orgamites characters.

The program consists of an ever-increasing range of tools addressed to schools, health professionals and visitors but also to parents who want to instill in their children the idea of looking after one’s health from early on. As a result, through the use of the Orgamites main presentation and of the information contained in the booklet for parents, teachers and health visitors, healthcare and organ donation have been introduced into the Greek national curriculum for the very first time.

Bone Marrow

Heart

Kidney

Small Bowel

Eye

Liver

Lungs

Pancreas

The material of the Orgamites can be downloaded from the official website of the Ministry of Health, while extra material -videos, games and educational tools- can be found at www.onassis.org and www.eom.gr.

Also present during the presentation at the 100th Primary School of Athens were the President of the Onassis Foundation, Anthony Papadimitriou; the President of the HTO, George Papatheodoridis; and the President of the Onassis Cardiac Surgery Center, Ioannis Boletis. Orgamites’ motto is “It’s what’s inside that counts”. It has a double meaning as it shows that it is not enough to look well on the outside, but we also need to feel good inside and ensure that our organs are functioning properly.

The event presenting the educational program, held on November 1, 2021, at the 100th Primary School of Athens, was attended by the President of the Hellenic Republic, Katerina Sakellaropoulou, in order to send her own symbolic, meaningful message marking the launch of the program.

During the previous school year, Orgamites traveled to primary schools all around Greece: Athens, Thessaloniki, Naxos, Chania, Zante, Florina and Xanthi. During the 2021-22 and 2022-23 school years, more than 10,000 primary school pupils and 900 teachers attended the program. This educational program can be selected either by health visitors or primary school teachers in the framework of programs for Health Education. Presentations can also be organized (online or with physical presence) by associates of the Hellenic Transplant Organization. Schools interested in participating in the program can find more information as well as an expression of interest form at www.onassis.org.

Photo credit: Pinelopi Gerasimou

Organ donation and transplantation: FAQs

1 2 3 4

Who could need a solid organ transplant?

It could be anyone. We could all, at a certain point of our life, have a failing organ which would need to be replaced by a transplant so we can lead a normal life. Modern lifestyle, various harmful habits such as smoking, high blood pressure and diabetes are all factors which render it a lot more likely for us to need a transplant during our lifetime than to become an organ donor after we die.

How can a patient be included in the National Register of Candidate Organ Recipients, in other words “the list”?

To begin with, a patient needs to be diagnosed with end stage organ failure. Then they will be referred by their treating physician to a Transplantation Unit dealing with that organ. At the Transplantation Unit, the patient’s name is entered into the National Register of Candidate Organ Recipients, which is kept by the HTO.

How are organs allocated to those on the waiting list and how is impartiality ensured?

Each organ is allocated individually to one of the candidate recipients figuring on HTO’s list based on strict international medical criteria, such as: blood type, tissue compatibility between donor and candidate, waiting time, age, bodily dimensions and, finally, the severity of the patient’s medical condition as attested by the physicians. Priority lists are produced by a specialised HTO software that cannot be tampered with. After that, the HTO lets the relevant transplant centers know who the best candidates for each organ are, based on the criteria listed above. The criteria both for inclusion in the waiting list and organ allocation are based on international protocols and set down by the Greek law.

Are organs kept in a national bank?

No. Solid organs can survive for a very short time outside the human body. The interval between organ removal and transplantation is called cold ischemia time (CIT), as during this time organs are preserved in ice and special solutions. The CIT is only 4 hours for the heart and the lungs, 9 hours for the liver and 24 hours for the kidneys. Tissues like cornea and skin are indeed stored in a “bank”, as they can be preserved for longer.

Never in the history of medicine has a patient pronounced brain dead come back to life

5 6 7 8

What exactly is brain death?

Brain death occurs when a person dies following irreversible and devastating damage of the brain stem (brain stem death). The permanent loss of all brain stem functions results in an irreparable loss of consciousness and in the person no longer being able to breathe without support. The deceased donor’s organs continue to function solely through mechanical ventilation.

When a person is brain dead, does this mean that the rest of the body functions normally?

The control centers of our vital bodily functions (automatic breathing, blood pressure, etc.), as well as our higher psychological and cognitive functions (memory, thinking, perception, etc.), depend on and are regulated by the brain stem. As a result, an irreparable damage sustained on the brain stem will inevitably and irreversibly cause the death of the entire brain within a short period of time. Brain death is then followed by “physical” death, whereby all body organs stop to function within a few hours. If the deceased suffers brain death while intubated in an ICU, some of the organs may be preserved so they can then be removed and transplanted to help give life to other people.

Can someone come back to life after being pronounced brain dead?

Never in the history of medicine has a patient pronounced brain dead come back to life.

What is the difference between brain death and being in a vegetative state?

The human brain consists of two main parts: the cerebral cortex and the brain stem. When someone is in a vegetative state, the brain damage is on the cortex. The brain stem continues to function adequately and there is sufficient blood flow to the brain. In this case, even though the patient maintains automatic breathing and cardiac function they are unconscious. Brain death occurs when the brain stem has stopped functioning due to irreparable damage, as a result of which blood also stops flowing to the rest of the brain. In clinical terms, brain death and vegetative state (coma) are two entirely distinct states diagnosed based on a specific set of criteria. As a result, people who are in a vegetative state can by no means be pronounced brain dead and therefore they cannot be potential organ donors.

Organ donation and transplantation: FAQs

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What happens when people haven’t expressed their wish regarding organ donation while still alive?

In accordance with the Law, if a person hasn’t registered to the HTO his approval or refusal to become an organ donor and they die under conditions qualifying them for organ donation the decision rests with the person’s family.

Can anyone become an organ donor?

Any adult citizen can register as a donor at the Organ Donor Register.

Is there an age limit to becoming an organ donor?

No. All adult citizens have the right to register their desire to posthumously help other people suffering from medical conditions. Clinical practice shows that certain organs from very elderly people may continue to function and therefore can be transplanted.

Can I register as an organ donor if I am suffering from a serious medical condition?

Yes. Physicians are the only ones in a position to judge, when the time comes, which organs can help save lives and which cannot. Even if the deceased was suffering from a serious medical condition, this does not preclude them from becoming an organ donor. With the exception of certain conditions, most diseases, even transmittable ones, are not considered a contraindication for donation.

Can I choose the organs I will donate?

Yes, in the organ donor form it is possible to choose which organs you will donate.

Can I choose to whom I will donate my organs?

For deceased donor transplants, no. An organ donation cannot be directed to a specific person but needs to follow the priority order set out in the EMYL register (the list).

Any adult citizen can register as a donor at the Organ Donor Register

Can I make a public appeal on social media or any other medium in order to find a compatible living donor?

No. The disclosure of the need or even the availability of human organ transplants is forbidden by law both on a national and on a European level. It is wrong to confound the process of appealing for blood and organ donation. If a person needs blood, their family can launch a public appeal on social media or elsewhere. But this is not the case for organ donation.

Are there risks involved for living donors?

There is always a certain amount of risk involved when someone undergoes an organ removal procedure. The exact level depends on the organ to be removed (kidney/liver segments). The physicians who are going to perform the operation need to inform, orally and in writing, the candidate donor about the possible complications the donation could cause to his health. In any event, all necessary steps are taken in order to minimise any possible complications for the donor, which are now extremely rare.

Can the donor’s family get in touch with the recipient’s family?

In accordance with Greek and international law, the identity of the donor is not revealed to the recipient’s family, and vice versa. The reason for this is to prevent any possible dependency relationship forming between the two families. Nevertheless, corresponding anonymously through the HTO is both allowed and encouraged.

What is organ trade? Does it happen in Greece and in Europe?

The term “organ trade” refers to the trade of organs willfully removed from a living donor against financial compensation. This practice takes place in countries whose legislation does not expressly state that this is forbidden. Just like all other EU countries, Greece forbids the trade of human organs. No traded organs have ever been used in any of the transplant procedures performed in our country. Transplant surgeries, whether from a living or a deceased donor, are only held in transplantation units of public hospitals under the strict supervision of the Hellenic Transplant Organization and the Ministry of Health. Transplants rely on a network of National Health System organisations working together continuously, from donor hospitals and recipient transplantation units to laboratories testing tissue compatibility and the services responsible for allocating the organs based on the National List and for organising transport with the help of the National Center for Emergency Assistance. All these services are placed under the continuous control of the HTO, which is available around the clock to coordinate the process.

How can I become an organ donor In Greece, there is a distinction between two donor concepts: registered donors and organ donors. The two terms are defined and explained below. Registered donors are adult citizens who declare while still alive that they wish to help their fellow citizens suffering from a medical condition by making their organs available for transplantation after their death. An organ donor is issued an “Organ Donor Card”. An organ donor is a deceased person from whose body at least one organ is removed and transplanted; or a living citizen who donates an organ or tissue transplanted to a relative or a person close to the donor, in accordance with the current legislation. Posthumously, a person suffering brain death while intubated in an ICU and while his bodily functions are supported artificially can become a donor. 1. How can someone express their wish to become an organ donor? By registering as a donor at the Organ Donor Register kept by the HTO, and being issued an organ donor card.

3. Can I change my mind and cancel my organ donor card? Certainly. If the organ donor has a change of heart, they have the right to cancel the organ donor card at any time by simply applying for a cancellation to the HTO.

2. How can someone be issued an organ donor card? Anyone wishing to become an organ donor can visit the website of the HTO (www.eom. gr), log in using his or her TaxisNet credentials and apply for a card directly at the HTO; or visit a Citizen Service Center (KEP).

4. Why is it important, if I am positively inclined towards organ donation, to get an organ donor card or at least discuss the subject with my family? In order to alleviate the relatives of the deceased from the burden of having to make such an important decision at an extremely difficult moment, given that the deceased has already made up their mind about the matter. In most cases, the decision is accepted and welcomed with relief by the deceased person’s relatives, who see it as a way of fulfilling his or her last wish.

Which solid organs can be transplanted

Lungs

Pancreas

Small Bowel

Kidney

Liver

Heart

What is the Hellenic Transplant Organization? The Hellenic Transplant Organization is the body responsible to develop and implement Greece’s national transplant policy, in collaboration with the Ministry of Health. It is supervised by the Ministry of Health and is responsible, among others, for coordinating, monitoring and safeguarding every step of the process leading from the donor to the recipient in all instances of organ, tissue and cell donation and transplantation. It operates 24/7 and works together with all competent authorities on a national and supranational level to ensure that transplants are carried out safely and successfully and to promote the concept of organ and tissue donation. Breakdown of the HTO’s areas of competence: • advises whether or not to establish, merge or shut down public structures in the organ, tissue and cell transplantation system; • proposes: a) the terms and conditions of operation applying to organ, tissue and cell transplantation structures; b) the institutional framework for their control and assessment; c) granting, renewing or revoking their operating licenses; • proposes a quality and safety framework for organ, tissue and cell donation and transplantation; • collects data to monitor the activity of all bodies involved in the transplantation sector, on the basis of which it prepares and submits to the Ministry of Health an annual evaluation report;

• organises and coordinates at local, national, and supra-national level the distribution of organ, tissue and cell transplants, and determines the framework which will enable the coordination of the various bodies; • keeps the National Registers of candidate donors, volunteer donors, donors, candidate recipients, organ, tissue and cell recipients, the opt-out list as well as any other National Register enabling the HTO to effectively exercise its responsibilities; • develops continuing education programs, provides guidance and certification to health professionals involved in every stage of the process (from organ donation to tissue and cell transplantation), including guidance for collecting

important postoperative information and for producing, adopting and disseminating related guidelines and protocols; • provides information, guidance and psychological and social support to candidate recipients, recipients, living donors and relatives of organ, tissue, and cell donors; • seeks to increase the number of organs, tissues and cells intended for transplantation by all available means, and in particular by organizing awareness raising and training sessions for the general public.

For more information about the Hellenic Transplant Organization visit www.eom.gr 27

Don’t let myths affect your life and the life of others Myth

The Truth

“If I find myself facing a serious health issue, the hospital physicians will let me die if they know I am an organ donor.”

To begin with, physicians at the ICUs do not know whether or not the patient is an organ donor. The HTO is the only entity with access to this information. However, even if they did know, saving the patient is the priority of ICU physicians. Only in the event that the patient has been pronounced brain dead the HTO is notified and the question of organ donation considered. The physicians diagnosing brain death have nothing to do with the HTO or with the Transplantation Units.

“He woke up from his coma just before they removed his organs.”

This piece of “news”, formulated in more or less the same terms, we have often read or seen in various movies and TV series. This is fake news and a completely mistaken phrasing. Organs are not removed from patients in a vegetative state but from deceased patients who have been pronounced brain dead based on scientific criteria. Never in the history of medicine has a patient pronounced brain dead come back to life.

“A person who is very wealthy or influential could bypass the organ allocation list.”

No. Whenever a new organ transplant becomes available, recipients are prioritised using specialised software and based on medical criteria. The software is protected and cannot be tampered with, while the allocation process is controlled by the HTO, the Transplantation Units as well as by specialised scientific committees.

“If I get on the organ donor list people will find out and they will take away my organs.”

Only the HTO has access to the Organ Donor Register. What is more, Greece, just like other EU countries, forbids the trade of human organs. No traded organs have ever been used in any of the transplant procedures performed in our country. Transplant surgeries, whether from a living or a deceased donor, are only held in transplantation units of public hospitals under the strict supervision of the Hellenic Transplant Organization and the Ministry of Health.

“Organ donation is against my religion.”

The biggest and most widely practiced religions in the world, including Christianity (Orthodox, Catholic and Protestant denominations), Buddhism, Islam, Judaism and Hinduism, are in favour of organ donation both in terms of doctrine and based on the positions expressed by their leaders.

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