Organ Meetings flyer issue (eng)

When knowledge and information help give life a second

“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.

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 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, my husband and I made the decision almost

without thinking. “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.

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

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

“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”

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 9 minutes, someone joins a waiting list for a transplant of one or more solid organs.

In Europe, the situation is no better. In 2019, more than 150,000 patients were on a waiting list, and with every hour that passes 6 new patients are added. These people could be our relatives, someone we love or even us. Our lifestyle and diet, stress, smoking and other aggravating factors result in an increasingly higher demand for solid organ transplants.

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.

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.

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.

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 National 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 National 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.

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.

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

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.

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.

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 NTO.

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

• Each organ is allocated individually to one of the candidate recipients figuring on NTO’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 NTO software that cannot be tampered with. After that, the NTO lets the relevant transplant centers know who the best candidates for every organ are, based on the criteria listed above.

• 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.

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

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

• 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 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.

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 Evan gelismos. 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 hos pital 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 presuppos es 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 trans plantation or with organ donation the mecha nism 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

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 seri ous 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 coun tries 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 medi cal 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 National 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 do nate 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. Communi cating with the relatives of our patients, espe cially 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’ fami lies, 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. How ever, the prospect of organ donation may help

ease the grief of the family. Provided the con dition 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 big gest 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 Trans plant 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. Recently, the National Plan for Organ Donation and Transplantation was handed over to the Greek Prime Minister. It was elaborated by a team of scientists from Greece and abroad, headed by Elias Mossialos, Professor at the London School of Economics, and Vassilios Papalois, Professor at Imperial College Lon don. The Plan includes, among other things, a description of the Transplant Coordinator’s role and of the need to strengthen the role of the National Transplant Organization. Finally, I think it is necessary to support the hospi tals 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:thedawningofa new era

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

Photo

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 National Transplant Organization (NTO) 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 NTO 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 developed by an international research team headed by two distinguished Professors, Elias Mossialos and Vassilios Papalois, and is meant to serve as a roadmap for organ transplantation in Greece in the years to come. 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, while waiting for the National Plan to become a law of the State thus permanently solving the shortages the of healthcare system in this sensitive field.

Disseminates information by developing programs designed to familiarise the public and raise awareness among citizens, parents, and students, such as the “Orgamites” educational program addressed to primary school pupils; organises seminars, conferences and workshops for healthcare professionals and associated entities; holds on-site information sessions for public organisations, media Groups and businesses, always under the supervision of the NTO and in collaboration with its scientific team.

The Onassis Foundation furthers awareness raising, through programs that inform citizens, parents and students and familiarise them with organ donation

Onassis TransplantNationalCenter

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 (ONTC): to offer the Greek society an organ transplantation hospital that will also serve as a transplantation research and innovation Thecenter.ONTRC is expected to act as a catalyst in the development of transplant activity in Greece, as it will support a national network of Undertransplantation.theState’s coordination and supervi sion, through the NTO, it will conclude part nerships with physicians abroad, who will share their know-how with the newly founded TheCenter.total

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

with cutting-edge technology budgeted at Moreover,€30,000,000.an independent paediatric trans plantation clinic, the Onassis Children Hospi tal, will offer specialised high-level paediatric cardiology and paediatric surgery services to children, reducing the need to go abroad for Withtransplants.state-of-the-art infrastructure, cut ting-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 Ainsurance.hospital for all.

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 Ouractions.efforts

focus on the creation of the Onassis National Transplant Center (ONTC), 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,

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.

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.

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

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 State’s necessary strategy both for treatment and prevention;

• the role of the National 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.

The National Plan for Solid Organ Donation and Transplantation provides, among others, for the following:

• strengthening of the National 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.

In this way, care becomes patient-centered and, at the same time, public confidence in the Health System of Transplantations is built.

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.

Photo credit: Andreas Simopoulos

Orgamites

An innovative educational program promoting healthy living and organ donation

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

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

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 the subject.

What 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 can “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.

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

Withdonation.aview

to informing and raising awareness amongst children, parents, and teachers, “Orgamites” is part of the ActionsMeasures and Primary Healthcare Programs developed by the Ministry of Health for the school year 2021-22. It is included in the ΧΙΧ thematic area, titled: “Promoting Organ Donation and Transplantation to children and teenagers”.

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 just been introduced into the Greek national curriculum for the very first time.

Captain

Liver

Lungs

Pancreas

Heart

Kidney Small Bowel

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 on www.onassis.org and on Thewww.eom.gr.eventpresenting the educational program, held on November 1, 2021, at the 100th Elementary School of Athens, was attended by the President of the Hellenic Republic Katerina Sakellaropoulou, who sent a message highlighting the symbolic and true value of the day and marking the launch of the program.

Also present during the presentation at the 100th Elementary School of Athens were the President of the Onassis Foundation, Anthony Papadimitriou; the President of the NTO, George Papatheodoridis; and the President of the Onassis Cardiac Surgery Center, Ioannis Boletis. The motto of the program 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.

Photo credit: Thodoris Manolopoulos

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 organised (online or with physical presence) by associates of the National Transplant Organization. Schools interested in participating in the program can find more information as well as an expression of interest form on www.onassis.org

Organ donation and transplantation: FAQs

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 life style, 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.

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 NTO.

Each organ is allocated individually to one of the candidate recipients figuring on NTO’s list based on strict international medical criteria, such as: blood type, tissue compatibility be tween donor and candidate, waiting time, age, bodily dimen sions and, finally, the severity of the patient’s medical condi tion as attested by the physicians. Priority lists are produced by a specialised NTO software that cannot be tampered with. After that, the NTO lets the relevant transplant centers know who the best candidates for each organ are, based on the cri teria 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.

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.

1Who could need a solid transplant?organ

2How can a patient be included in the National Register of Candidate Organ Recipients, in other words “the list”?

How are allocatedorganstothose on the waiting list and how is ensured?impartiality

Are organs kept in a national bank?

5What 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.

7Can someone come back to life after being pronounced brain dead?

The control centers of our vital bodily functions (automatic breathing, blood pressure, etc.), as well as our higher psycho logical 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.

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

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.

6When a person is brain dead, does this mean that the rest of the body functions normally?

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

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

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. donation

In accordance with Law no. 4512/2018, if a person hasn’t registered to the NTO 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.

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

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.

organ donor form it is possible to choose which organs you will donate.

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).

What happens when people expressedhaven’ttheir wish regarding organ donation while still alive? Can anyone become an organ donor?

Is there an age limit to becoming an organ as an organ donor if I am suffering from a serious

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.

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.

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 NTO is both allowed and encouraged.

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 National 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 NTO, which is available around the clock to coordinate the process.

Can I make a public appeal on social media or any other medium in order to find a compatible living Aredonor?there risks involved for living donors?

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

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

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

How can I become an organ donor

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 NTO, and being issued an organ donor card.

2. How can someone be issued an organ donor card?

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

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 NTO.

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.

In Greece, there is a distinction between two donor concepts: registered donors and organ donors. The two terms are defined and explained below.

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What is the National Transplant Organization?

The National 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 NTO’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 operatingrenewingandframeworkstructures;transplantationb)theinstitutionalfortheircontrolassessment;c)granting,orrevokingtheirlicenses;

• 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 NTO to effectively exercise its responsibilities; • develops educationcontinuingprograms, provides guidance and certification to health professionals involved in every stage of the process (from organ donation to tissue and cell guidelinesandandpostoperativecollectingincludingtransplantation),guidanceforimportantinformationforproducing,adoptingdisseminatingrelatedandprotocols;

• provides andrelativeslivingrecipients,supportpsychologicalguidanceinformation,andandsocialtocandidaterecipients,donorsandoforgan,tissue,celldonors;

• seeks to increase the number of organs, tissues and cells intended transplantationforby all available means, and in particular by organizing awareness raising and training sessions for the general public.

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

The TruthMyth

“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 NTO 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 NTO is notified and the question of organ donation considered. The physicians diagnosing brain death have nothing to do with the NTO 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 NTO, 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 NTO 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 National 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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