Who Lives, Who Dies
by Ion Martinis
Unlucky people, ethical dilemmas about their right to health, and our power to change the odds for them
What it's about
What do Chris, a firefighter in New York and veteran of 9/11; Christine, a 32-year-old waitress, failed actor, and mother of a baby in LA; Leonard, an electrician about to start a family in Philadelphia; and Justin, a Black American parent of a shot teenager who has spent his whole life in the ghettos of Chicago, all have in common? They are all decent, hard-working, family people fighting life-threatening diseases for which treatments exist but are outside their reach. Will they survive? How will their families experience their travails? Will the healthcare system stand by them? And what impact will their stories have on improving health outcomes for others like them?
In his debut work, 17-year-old author and aspiring biomedical ethicist Ion Martinis takes us into the homes and lives of his characters, through captivating stories that blend shock, suspense, faith, love, grief, and hope. With each story, he brings to life a different ethical issue in modern healthcare: from drug pricing, to insurance coverage, to organ allocation, to genetic discrimination, to racial inequalities.
These involve all actual dilemmas and Martinis does not go for the easy but unrealistic answers on each extreme. You won’t find obvious “saints” or “villains” in his stories – the good doctors cannot do miracles; the pharmaceutical and insurance executives have hearts and consciences; the hard-core libertarians are open minded to see the effect of inequality. The author’s primary aim is to raise awareness, help us understand these complex issues, and make us all think and act. He inspires us to find the right incentives for science to progress but at the same time feel compassion and provide a proper safety net for the “unlucky” ones around us to benefit from that progress. And he shows us that we can all mobilize to make change happen so that we have to face many million fewer times the dilemma “who lives, who dies”.
Around the world
To be updated as we expand our reach...
LIFO Greece: Podcast (in Greek) by Giannis Pantazopoulos. LIFO is the No. 1 in print magazine and Internet media in Greece.
Available on Apple Podcasts, Google Podcasts, Spotify, and the LIFO website.
Claim Your Power: Podcast by Kim Peretz. Claim Your Power is subscribed by teens around the world, inspiring them to tap into their skills and interests and unleash their full potential.
Available on Apple Podcasts, Spotify, Listen Notes, RSS, and more.
Support the cause
“Who Lives, Who Dies” will be a source of direct contributions to the cause. All proceeds from the sales of this book will be donated to organizations promoting the human right to health (if you didn’t notice the big red sticker on the cover, that is). The first beneficiary will be the Impact Cancer Foundation, a collaboration of top-caliber cancer researchers from across all major Swiss research institutions currently developing immunotherapies for lung cancer. The aim is to reduce the prevalence and costs of treating lung cancer, with an ambition to expand this research into other cancers.
More beneficiary organizations will be added as I select them with the help of trusted advisors. This will include not only organizations advancing scientific research but also organizations focused on advocacy and policy shaping behind the same cause. And there will be more ways to contribute, through the book (some special editions are already in the works) or through other platforms.
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Besides purchasing a copy of my book to support the cause, you can use the GoFund me campaign in the right (we have a $10,000 target) to make additional donations, however large you want!
About the author
Ion Martinis is a Year 13 (Grade 12 equivalent) high school student in the IB Diploma Program at the International School of Lausanne, in Switzerland. He was born in Athens, Greece in 2004 and moved with his family to Switzerland at age eight. In his school studies, external courses, medical lab internships, shadowing of surgical operations, and personal projects, he has explored and written about biomedicine and its intersection with ethics. Out of this exploration was born Who Lives, Who Dies, his first book. You can find more about his inspiration and writing process in the Foreword and at wholiveswhodies.com.
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Outside school, Ion is a classical pianist studying at the Conservatoire de Lausanne. He has been a Swiss national finalist at the Steinway Piano Competition. Over the last year, Ion has combined his passions for scientific research, classical music, and social change in an innovative project aiming to convert thousands of primarily underprivileged teenagers and young adults into active classical music listeners. The project will launch in October 2021, when also the name and other project details will be unveiled. For those interested, Ion’s author page on wholiveswhodies.com will have links to his classical music conversion project when they become available.
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When not engaged in biomedicine, ethics, or classical music, Ion represents his almost 400 fellow high school students in school government, plays soccer in local tournaments, takes dramatic aerial photos with his drone, and volunteers at local organizations helping refugees and the poor.
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Ion is very interested to hear your opinions and suggestions. You can reach him by email at ion@wholiveswhodies.com or through the contact link below.
What's next
I hope that this is only the start, that the publication of the book sets in motion a number of different actions towards the ultimate mission: to secure the right to health for all and to minimize the number of times when we have to decide “who lives, who dies” for any fellow human. And I hope that “Who Lives, Who Dies” becomes a live, on-going project, with multiple legs.
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First, I hope that we build a community. As much as I was sensing passion and interest from everyone I spoke to about biomedical ethics in the last two years, writing a book is admittedly a lonely endeavor. But now that the book is out, I hope that I will not have that feeling any more. I hope that we each find each other, so as to share, debate, propose, or even initiate action. Look out for a Reddit board, speaker series, virtual debates, a health ethics conference, and other initiatives that will bring many of us closer together and help advance our cause. Again, wholiveswhodies.com will hopefully become the center of our community and the source of information for all new activities.
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Then, I hope that we keep expanding our scope and reach. As much as the four issues the book covers are very important, I know that there are many more biomedical ethics issues to cover (teasers to many of which I have already included in the Further Readings section). Even if the central theme of the human right to health and many of the related challenges are universal and hopefully resonate with a global audience, I am aware that we need to capture more of the specificities of those challenges outside the US which is the setting of our first four stories. And, back to the point I made earlier about the loneliness of writing stories, the truth is I can’t—and shouldn’t—be the sole author of those stories—in fact, I hope that many of you will send ideas for new stories and some of you will be inspired to write stories yourselves. My ambition is that wholiveswhodies.com becomes a live platform where you post your stories and that soon enough we publish “Who Lives, Who Dies Vol. 2!” with some of your names as co-authors on the cover (Better title ideas for the sequel are welcome!).
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Any more ideas are also welcome for the “Who Lives, Who Dies” project we are just starting: on how we can grow the awareness, how we can trigger more individual reflection, how we can have more conversations, how we can make more of us engage in initiatives, and, in the end, how we can have more impact towards achieving our goals and realizing our mission.
The story behind
Interests and Personal Project
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The origins of this book go back quite a while.
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At around age 12, I began getting interested in biomedicine––at the time, it was awe for the magical power of biomedicine to prevent and treat disease, coupled with fascination about the speed of scientific progress. While my interest has evolved since then on exactly what I’d like to do (e.g. clinical biomedicine vs. research and what field in particular), my interest is still as keen as it has ever been.
It was a few years later, at age 15, that I first got into ethics—the study of what’s morally right and wrong. I attended the course “Emerging Technologies” at the School of the New York Times, where I studied the ethical implications of technology and science (biomedical and other). I was hooked by this course, and by the end, I knew I wanted to learn more about ethics.
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So, when it came to my keystone school project later that year—the Personal Project, a standard part of the International Baccalaureate Middle Years Program (MYP)—I knew I wanted to blend my interests in biomedicine and ethics. I explored in detail a range of issues in health ethics through interviews, books, and online research. This opened my eyes to how close-hitting and widespread the effects of the issues I studied are, yet how little we all know and do about them. I decided to make pharmaceutical pricing—the protection of patents as an incentive to invest in pharmaceutical research and development, the very high prices set in the absence of competition, even the tactics used to keep extending patent protection (and high prices) beyond the original patent period—the subject of my Personal Project.
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I did the necessary research and started writing the Personal Project paper, laying out in perfect academic harmony all the facts and perspectives. But after a while I realized that this would be of interest only to those familiar with the topic already. What good would that be? I stopped writing and started scratching my head. How could I reach and mobilize those who needed to know most: the ones unaware about the topic and dilemmas?
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The inspiration
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It was at that moment that my brother, an admirer of Richard Feynman with a passion for Artificial Intelligence, pointed me to a book he had read and loved: “I, Robot” by Isaac Asimov. In his book, Asimov wrote a series of short stories with the aim to inform youth about ethical dilemmas in robotics. To be fully transparent, I was very skeptical at first about his method. Why create such detailed characters and such an intricate plot, when the only aim was to communicate an ethical concept? But as I read story after story, I came to care about the characters, and that in turn made me care about the issues Asimov was trying to raise.
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Thanks to Asimov, my Personal Project writer’s block was over. I would talk about pharmaceutical pricing through a story. I created fictional characters, entered their lives, and had them experience the effects of pharmaceutical pricing. As I saw the issue through my characters’ lens, I actually realized that pharmaceutical pricing was a technical dimension of a much broader issue: how do you provide the right incentives for pharmaceutical science to advance while ensuring that its benefits are accessible to all?
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When the Personal Project formally ended, I shared my story with a few classmates and other friends. The feedback was overwhelmingly positive, and even more rewarding was that I found myself having much richer conversations with everyone who read the story. Seeing the impact of my work, I was inspired to continue.
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More stories...
And that’s how “Who Lives, Who Dies” was born.
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My Personal Project became the first story in the book. With more time in my hands—and a heightened sense of responsibility as this was now headed for the world—I added more character depth, more facts, and more sides of the argument.
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I chose to center my second story on the organ allocation system. Like in my first story, when I created the characters and went into their shoes, I realized again that the issue was broader: it was lack of education and incentives for organ donations (to increase organ supply) and healthy living (to reduce organ demand). Coupled with old-style political protectionism, monolithic ideological prejudices, and sheer healthcare system resistance to scientific and technological advancement, the result was that more than 50,000 people lose their life because of organ shortages in the US alone every year.
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I decided to make my third story about genetic testing, and how it may be used to discriminate against people with predispositions to diseases like Alzheimer’s. Again, it was after I created the characters and “lived” their story that I realized the issue was broader: how to harness a scientific breakthrough like genome sequencing to actually provide better care and more affordable coverage, with full protection of personal privacy and mental health.
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With three stories at hand, covering a good variety of issues, I felt ready to hit “publish” (Side note: as I subsequently discovered, hitting “publish” was a little more complicated than it sounds, but I shouldn’t bother you with that).
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But then, at age 16, I developed a much richer understanding of health ethics.
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I took the Harvard undergraduate course “Introduction to Biomedical Ethics,” taught by Dr. Eli Hirsch, where I got to explore the ethical dilemmas underlying many of the issues I had already learned about at a much deeper level.
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Later that year, I took another Harvard course, “Social Medicine in the US,” taught by Dr. Jason Silverstein. The course helped me understand in much more depth how economic inequality translated into health care access inequality. The course also helped me see very clearly the dimension of racial inequality and inspired me to investigate it deeper, starting with the seminal American Apartheid (Massey and Denton, 1993) and following it up with many more readings.
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With my renewed understanding of the issues, I went back to my manuscript and enriched the three stories I had written. I also decided to write a fourth story, dedicated to how a black American family struggled to secure their human right to health across three generations. Transporting myself into the ghettos of Chicago, putting myself inside the house of Justin (the main character), and speaking through his voice, was genuinely humbling and unsettling. But it was immensely enlightening for me and my ability to capture their ordeal. I hope I did Justin––and everyone in the Black American community he represents––right.
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As I knew that the stories could not capture the full breadth of the issues at hand—and with the hope that many of you will have the desire to dive deeper—I have included a list of Further Readings where I share my own most important sources of insight, for the issues dealt by each story as well as for some of the most broadly discussed biomedical ethics issues in the world today. Highly recommended (but strictly optional and at your own leisure and …risk!)
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"Judging by the cover"
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With the four stories written, I had the book. It was only then that I was able to see the pattern, the connecting threads across my stories, which gave me the book’s title, subtitle, and cover art.
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The original inspiration for the title came from a lecture in the class “Social Medicine in the US,” when, on a discussion about racial health disparities, Dr. Silverstein kept saying “who lives, who dies” over and over. That phrase stayed with me and rang the loudest in my head during the early stages of the COVID pandemic, when resources for emergency COVID patients were especially limited and health care providers had to decide “who lives” and “who dies”. When I realized the connection of that phrase to my stories, I knew it had to be the title.
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I wanted the subtitle to be equal parts situation, complication, and resolution, as hopefully are my stories. The situation description (“Unlucky people”) was the simplest way to express the effect of poverty, class, race, genetics, (lack of) education, and risky lifestyle on each main character’s health and chances for survival. The complication (“ethical dilemmas about their right to health”) comes from the fact that they all fall through the cracks of the health system and find themselves denied of their basic human right to health. The resolution (“our power to change the odds for them”) shifts the focus on what we as individuals and as a society can do to make our main characters (and the millions like them) be less “unlucky.” Capturing the full essence of the book in a 100-character subtitle was not easy––but the challenge to make it concise was very helpful in sharpening my own thinking and in fact triggered even a final iteration to ensure I drive the key themes consistently across all four stories.
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Last but not least, the cover. Whether haunted by the fear of readers who “judge a book by its cover” (salute to my favorite comedian Fred Armisen and his synonymous hilarious segment on Late Night with Seth Meyers), terrified of the Procrustean power of the Amazon thumbnail aesthetic limitations, or simply out of the need to distill the essence of the book through a lasting image, developing the cover added about a month of work after the book was completed. After exploring many alternatives over several iterations, everyone I consulted felt that the cover imagery might not have been the most pleasing to the eye but for sure drew attention: a doctor, also as a proxy for the health care system, in a posture inspired by the statue of Jesus the Redeemer in Rio, as a God deciding who gets to live and who gets to die, torn from the dilemmas but also a metaphor for the broken health care system whose cracks our characters fall through. Does it hit the mark? I hope so but of course the verdict is still in your hands.
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My coming-of-age
And that’s the story of “Who Lives, Who Dies.” And with it, if you would allow me the personal diversion, the story of my own coming-of-age.
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I am a very different person today than I was when I started to write what became “Who Lives, Who Dies.” The book shaped and chronicled my passage from adolescence to adulthood on so many levels and dimensions. Whether it was attention to detail in characters’ lives and medical predicaments, ability to create multiple narrative layers and use non-linear storytelling, introduction of character complexity, confidence in pacing to unfold the story, comfort with ideological and moral conflict, acknowledgment of all perspectives on an issue, endorsement of protest but only if it leads to resolution, showing over telling, and so on and so forth…, each story felt more complete than the one I had written just before it, each iteration was capturing my own changing worldview and personality, each character had a part of me and those who shaped me.
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The book may be complete now (at least until you read the next section…) but I as a person continue to be very much work in progress and I hope I didn’t hide that from you.
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Even if nothing happens as a result of “Who Lives, Who Dies,” even if nobody ever reads it, I will have gained so much from the journey of writing it and I will be forever grateful for it.