By Amy Waterman, PhD, Director, Patient Engagement Research Lab
I have worked as a Health Psychologist and leader in Patient Engagement in transplantation for over 20 years. When I was asked to present a talk outlining the state of living organ donation at an international health summit titled, “Towards Global Convergence in Transplantation: Sufficiency, Transparency, and Oversight,” I felt confident that I knew the challenges and opportunities for improvement. I was wrong. By preparing for and participating in the summit, I learned even more about transplant on a global scale. I came away from the event feeling humbled, proud, and more deeply connected to my colleagues around the world who support patients seeking transplants, donors, and families in their own countries in a similar way that I do here. As Houston Methodist Hospital always says, it was truly a moment for me in leading medicine on the international stage.
Honoring their nation’s highest rate of organ donation in the world, the Summit took place in Santander, Spain and was organized by Dr. Beatriz Domínguez-Gil, Director General of the Spanish Organización Nacional de Trasplantes (ONT) under the Spanish Presidency of the European Union. The gathering was co-sponsored by the Council of Europe, The Transplantation Society, the World Health Organization, and was held with the support of the European Society for Organ Transplantation and the International Society of Nephrology. The meeting included 183 participants from 57 countries. Our Living Donation Working Group reviewed literature and met virtually prior to the event, often at very unusual hours of the day, to align on a prioritized set of recommendations to present.
During the summit, all the attendees reviewed the current state of donation and transplantation of organs, tissues, and cells. We identified key challenges and shaped the future direction of transplant activities worldwide to ensure that advances in this field benefit citizens in every nation. For me, it was a tremendous opportunity to learn from esteemed colleagues and patients who work daily on the same health challenges that I do, all around the world. Their intelligence, kindness, and strategic thinking were so insightful.
I discovered new areas to be sensitive to that, even as a patient engagement leader, I had missed for years. Some leaders shared that their countries do not have enough dialysis machines to provide dialysis for all those who need it. Without access to dialysis, patients die in weeks or months. I am saddened to know that dialysis is not always available for all people without functioning kidney. I have come to take dialysis for granted: it is a therapy that is so easily accessible to US citizens, and it sustains lives while other organ donation options are explored.
Participants from other nations related stories of organ trafficking: poorer individuals are coerced into selling their kidneys, often for very little money. These stories of exploitation and unsanitary transplant conditions shocked me. One nephrologist from the Philippines invited me to come to her country to help her to overcome mistrust in the national medical system and slow people from selling their kidneys there. I agreed to come – how could you not?
During the summit, I presented an overview of global living donation with my colleagues Drs Krista Lentine and Matt Cooper. I continue to be proud that, no matter what challenges the US still faces in the field of transplantation, our living and paired donation innovations inspire healthcare professionals the world over. As I walked to the microphone at this European conference, I said, “America is in the house,” and attendees laughed and clapped.
Normally in my talks, I only cite data about the United States’ living donation rates. In compiling and presenting global data, I learned that many patients cannot get a living or paired donation transplant because these kinds of programs simply still do not exist in their countries. Even where living donation does exist, it varies by organ: living liver donation is even less available globally than living kidney donation. To combat such disparities, some surgeons donate their time to perform living donor transplants, flying across the world to conduct transplant surgeries for those in need. While extremely generous, leaders from less developed nations communicated that this practice is not sufficient because patients need transplants every week.
The Summit’s focus on implementing preventive strategies to reduce the burden of diseases that necessitate transplantation was particularly reassuring. Global recommendations for healthcare professionals, policymakers, and stakeholders were drafted to improve patient care, increase progression towards expanding organ transplantation, ensure transparency, and oversight of clinical practices, strengthen the prevention of organ trafficking and combatting transplant-related crimes, and foster responsible innovation for the clinical use of substances of human origin. Along with many others, I championed that, as we expand opportunities for living and paired donation globally, we do so after improving education and outreach about living donation and ensuring risk assessment, monitoring, and disclosure of all living donors long-term to ensure safety. This fall, a special issue of the journal, Transplantation will be published outlining all these recommendations and priorities for action.
Notably, this year the World Health Organization (WHO) also adopted the recommendations of the Santander Summit, which has now become the global standard outlined in the Resolution adopted by the World Health Assembly1 entitled “Increasing availability, ethical access and oversight of transplantation of human cells, tissues, and organs.” The Resolution urges the WHO to support all member states in complying with the Resolution globally. It is profound to me to know that these recommendations are now being endorsed at the level of the WHO and acted on globally by many. Leaders in transplant work to make recommendations like this every day, but we seldom see them embraced at this level.
After the Summit, I thanked the organizing committee and Dr. Domínguez-Gil, sharing that I personally grew as a transplant leader from the experience. Dr. Francis Delmonico, an esteemed transplant surgeon from Harvard Medical School and mentor, challenged me to take on the mantle from the original founders of transplantation, including Dr. Paul Terasaki, as a new leader. He left me with this quote to ponder, as I do you:
“We dare not forget today that we are the heirs of that first revolution. Let the word go forth from this time and place, to friend and foe alike, that the torch has been passed to a new generation of Americans–born in this century, tempered by war, disciplined by a hard and bitter peace, proud of our ancient heritage–and unwilling to witness or permit the slow undoing of those human rights to which this nation has always been committed, and to which we are committed today at home and around the world.”
Inaugural Address of President John F. Kennedy, Washington, D.C., January 20, 1961
The organizer of the Summit, Dr. Beatriz Dominguez-Gil kicks off the Santander Summit to much excitement.
Proud to co-present about the state of living donation across the globe with my favorite colleagues, Drs Krista Lentine and Matt Cooper.
International transplant leaders celebrate their hard work and global accomplishments together in Spain.
References:
- WHO. 2024; https://apps.who.int/gb/ebwha/pdf_files/EB154/B154(7)-en.pdf. Accessed 8-12-2024.