The western Balkan country expanded its donor base and shrank waiting lists for life-extending surgery. Can Bulgaria do the same? From AEJ Bulgaria.
Luca and His New Heart
“I still remember it like it was yesterday. It was November 8, 2007. I was a very active kid, good at sports, and an excellent student. But that day I was pale, I felt very weak. Suddenly it was like a black curtain fell over my eyes, and I could barely breathe. This was the first time I ended up in a hospital. It turned out I was not as healthy as I thought.”
This is what Croatia’s Luca Vugrac tells Eurotransplant, the European network for organ donation and transplantation. Luca was only 13 when he found out his heart was failing and he would have to receive a heart transplant.
“I remember the first thing I asked the doctor after he told me my heart was weak and I would need a transplant. “Please be honest, doctor – what are my chances of making it out of here alive?” Luca says. The doctor was optimistic. There was a 95% chance the operation would be successful, he told the boy. What Luca didn’t know, however, was that he would have to stay alive long enough until an organ was available. Luca’s state deteriorated to the point where a machine had to substitute for his heart and lungs. But the boy was lucky. He survived long enough, and a donor was found.
“When I woke up, I didn’t believe I had had a transplant. But I certainly felt breathing was a lot easier,” he remembers.
After the surgery, Luca spent nearly two months in the hospital. Every day was a battle against his mind and body. But today he is a successful young man. He says of his ordeal, “The illness definitely changed me. I became more serious, maybe too serious at times, but I also believe I became more compassionate, and what is more important, I became a better person.”
Yordan, Who Missed His Chance for a New Life
On 28 October 2021, Sophia Pencheva had to part with her son forever. The 23-year-old Yordan was among the tens of Bulgarians waiting for a heart transplant. But he was not one of those blessed to get a chance at a new life.
To treat his serious condition and end-stage organ failure, an artificial pump was placed first in the left chamber of his heart and then in the right chamber, making Yordan the first citizen of Bulgaria to undergo this complicated procedure. The machine which helped him breathe was a temporary lifesaver and he survived nearly two more years, waiting and hoping for a heart transplant. But a suitable donor never appeared.
“The whole time, only one donor appeared, but the organ wasn’t compatible. I am sure that if there was a suitable heart, Danny would be alive and well, because he was very resilient and he had the will to live,” Yordan’s mother says. She took it as her mission to improve the state of organ donation in Bulgaria. She believes that there are many errors and omissions in the process.
“It is unacceptable for me as a mother to have to face the whole of Bulgaria and ask for a heart for my child. I wasn’t looking for a spare part for my car, I was looking for a heart for my son. It is not for me to beg the hospital to put my son on the emergency waiting list. I can’t go to the Medical Supervision Agency every morning and insist that they submit a request to all hospitals and all major coordination centers to search for a heart. This is not my job,” Sophia says.
The Medical Supervision Agency, part of the Health Ministry, monitors transplants in Bulgaria.
“Every morning I would beg them to show me the requests they submitted and the answers of the hospitals. I wanted to see them with my own eyes. I’ve called the ICUs myself to ask if a heart was available. I understand the doctors who turned me away, because it’s not acceptable for a random visitor to go in there, but I had nothing left to lose. I had hit rock bottom and nothing could stop me anymore,” she recalls.
These are two stories with different endings. The first took place in Croatia, which, after years of stagnation in this field of medicine, managed to become a European leader in organ donation and transplantation in just a few decades. The second story happened in Bulgaria, the European Union country at the bottom of the list in terms of the number of transplants carried out.
Transplant Success Reflects the Overall Level of Medical Care
In practice, transplants, regardless of type (organ, tissue, or cell), serve as a sort of yardstick for the level of development of medicine in a country. This is so because transplants encompass a wide range of medical activities: the care and follow-up of seriously ill patients, finding potential donors, preserving the viability of organs, the surgical procedures themselves, as well as the post-operative treatment and monitoring of patients. All these processes are invariably connected, and if one is not carried out properly, the emergence of a donor situation and saving a seriously ill person becomes impossible.
Unfortunately, despite global medical advances, millions of people around the world die while waiting for a donor. The shortage of organs is not only a problem in Bulgaria. In the United States, 100,000 people are waiting for lifesaving organ transplants.
In the eight member countries of the Eurotransplant network alone, 13,276 people were on the waiting list for a transplant as of 31 December 2022. According to the Council of Europe, nearly six new patients are added to the list every hour. In Bulgaria (not a Eurotransplant member), the number of people on the list has been around 1,000 for years and the lack of positive change in the transplant system means the number remains stubbornly high.
Where Does Bulgaria Stand?
Bulgaria ranks at the bottom of the EU list in terms of the number of transplants performed per million population and the corresponding number of lives saved through the procedure. There are various reasons for this: gaps in the system that lead to missing possible donor situations, lack of commitment of hospital management to organ donation, added to insufficient public awareness of the subject. As a result, seriously ill Bulgarians, who might have had a chance through transplantation, have lost their lives. According to the grim statistics of the Medical Supervision Agency, in the past 10 years more than 1,000 people on the transplant waiting list have died.
The problem with the low number of transplants in Bulgaria has existed for years, and despite occasional public declarations, no minister of health has been able to improve the process. The ministry acknowledges the challenges in its draft document for the National Health Strategy 2030. The document states that the number of transplants performed in Bulgaria is many times lower than in other European countries. The average number of donors in Bulgaria per one million was 5.54 for the period between 2014 and 2018, while the EU average was 20.74.
Croatia’s Good Example
At the same time, a country with a population of just over 4 million managed to build and improve a successful model for organ donation, setting an example for others – all in just a decade. In 2011, Croatia recorded the highest percentage of cadaver donors used, as well as kidney and liver transplants performed in the world.
It is remarkable that only a decade earlier Croatia lagged well behind other European countries and had a low organ donation rate of 2.7 donors per million population. In the following years, however, it recorded steady growth, which reached 33.6 donors per million population in 2011. The Balkan country still manages to maintain this rate today. For comparison, according to data from the Medical Supervision Agency, in 2020 Bulgaria had just two donors per million population.
Between 2008 and 2011, the waiting list for a kidney transplant in Croatia shrank by 37%, and the average waiting time for the life-saving surgery fell from 46 to 24 months. As of August 2022, there were fewer than 400 people on the waiting list for a new organ transplant in Croatia.
“Driven by the fact that the organ donation needs of patients were not being met, the Croatian Ministry of Health initiated a number of reforms to improve the national transplant program. The reforms were carried out over a period of 10 years (2001–2011). These efforts have resulted in a 10-fold increase in the percentage of transplanted organs from the deceased,” Croatia’s national organ donation coordinator, Dr. Mirela Busic, told Medical News.
“A key moment in increasing the number of transplants performed in Croatia was the appointment of an organ donation coordinator in each hospital and the appointment of a national coordinator. This improves the identification and tracking of potential donors,” Dr. Busic pointed out.
The role of coordinators is extremely important for the timely identification of potential donors, monitoring their condition, and preserving the organs until the moment of transplantation. A crucial step in the Croatian transplant program was the appointment of hospital transplant coordinators and a national coordinator in 2000. The national coordinator formed a coordination group at the Ministry of Health, which provides 24-hour support to hospital coordinators and hospital teams.
Croatia is one of the eight member countries of the European organ donation network Eurotransplant. According to Dr. Busic, her country’s membership in Eurotransplant has helped significantly in the evaluation of patients waiting for a transplant and for the more efficient distribution of organs.
In the Opposite Corner: Bulgaria
In recent months, Bulgarian authorities have talked of a new funding model for organ transplants, but the political upheavals in the country put the issue on the back burner. However, the Health Ministry points specifically to “the limited reimbursement of costs for transplants in Bulgaria, as well as the regulatory restrictions” as some of the obstacles to successful transplant operations.
Bulgaria has 30 organ donation coordinators based at the 30 medical facilities that have permission to establish and maintain the vital functions of a potential donor with brain death. But for various reasons the number of potential donors is not sufficient to reduce the list of nearly 1,000 seriously ill Bulgarians awaiting transplants. It is poignant that in 2021, out of the 30 donor bases in the country, only 9 sent out notifications about potential donors whose organs could save a human life.
Bulgaria does not have a national organ donor coordinator, either.
According to experts, the deficiency in early detection of potential donors is one reason for the small number of transplants. Dr. Sibila Marinova, head of the department of anesthesiology and intensive care at Dr. Stefan Cherkezov hospital in Veliko Tarnovo and regional coordinator for organ donation, spoke about the issue at a round table on organ donation in May 2021. According to her, a serious problem is that a large part of Bulgarian doctors cannot diagnose brain death. “That’s where the problem with the lack of donor identification comes from, because doctors do not know who is a potential donor,” she pointed out. According to her, the issue can be resolved by educating all levels of doctors at the donor bases.
Yordan’s mother agrees. “The coordinating doctors are an important part of the organ donation process. They don’t have the drive, they don’t have the motivation, they don’t have the training to carry out the process related to a possible donor situation, which is very complicated and requires a lot of resources, organization, and funding,” Sophia Pencheva said.
The National Health Strategy, prepared by the Health Ministry, acknowledges these shortcomings.
“To improve the processes related to organ donation and transplantation, all large medical facilities that have the potential to participate in the transplantation processes should be involved,” the document states.
Since 1988, Croatian laws governing the use of organs from cadavers in transplant operations have been based on the concept of presumed consent, but the opinion of relatives is regarded as well. In Bulgaria, the system is similar. Any person over the age of 18 can be a potential organ donor, unless they have expressed their disagreement in writing during their lifetime. However, the relatives of the deceased have the last word .
The president of the Croatian Donor Network, Nikola Zgrablic, recently said that 121 transplants were done in 2021. The network was created in 1998 in response to the poor donation conditions, the inefficient transplant system, the lack of donors, and the huge waiting list – a situation that is similar to the one in Bulgaria at the moment. According to him, the most recognizable product of the Croatian Donor Network is the donor card, which in itself has no legal force, but is key to the decision of the relatives of the deceased when they face the difficult moment of loss of a loved one.
“Today, every hospital in Croatia has at least a few doctors trained in the donor program,” Zgrablic added. He announced a few new initiatives, including training of medical students and a new digital donor card.
In Bulgaria there also exists a donor’s card that can be filled during one’s lifetime to give consent for donation. It can be downloaded from the website of the “Yes for Life” campaign. However, it has no legal standing and the final decision is again up to the relatives. The question of how far this card fulfills its social role of sufficiently popularizing the cause of donation is also debatable.
Public Awareness Is Key
Over the past decade, public awareness of organ donation in Croatia has been greatly improved through continuous education, promotion of donor cards, and national public campaigns organized by the Health Ministry and NGOs. Experts in transplant medicine often speak publicly on these topics. People whose lives were saved by a donor’s organ often speak in Croatian media.
In Bulgaria, events like this are rare. The commitment of public authorities is sporadic, inconsistent, and without a clear concept for attracting attention to the problem. The topic enters the public space most often when there is a story about a transplantation in the media, which is still news in Bulgaria.
“People don’t know about this problem, they are not educated about it. When they become familiar with it, everything will be much easier. There are so many simple things that can change the attitude towards organ donation. It’s a heavy subject, but it’s part of our lives,” Yordan’s mother says.“When you see a healthy boy with a transplanted heart or when you see a crying mother, it stays with you and that can help someone.”
This article originally appeared on the website of the Association of European Journalists – Bulgaria. It was a winner in “Human Rights: Beyond the problems,” a competition to promote reporting on solutions to existing problems, funded by the social enterprise Power Pops and the America for Bulgaria Foundation.