Customer Reviews

On the List: Fixing America's Failing Organ Transplant System

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ON THE LIST is what all investigative journalism should be: great story telling that allows us to understand complex and difficult issues. In the case of ON THE LIST, Abrahams weaves a great non-fiction story to illuminate an ethically, socially and scientifically complex topic in a personal and very human way. Not just a book for those directly involved in transplant operations. A must read for those interested in health care system issues, medical ethics and a compelling tale on an important and timely topic. On the List: Fixing America's Failing Organ Transplant System

On The List is a captivating account of how two people from such different backgrounds are able to find common ground surrounding unfortunate circumstances. Aside from the intriguing story, what I found most interesting and kept my attention throughout the book is the author's interweaving of policy, the pitfalls of our donor registry alongside two true life situations. Ultimately, the story combined with the policy aspect of the books makes it an easy and educational read.

Harlan Abrahams does a great job of writing a book about a very current subject. His research is meticulous and well documented. The story about Ernesto is very interesting and poignant. Hope to read more books by Abrahams.

What an extraordinary book! Messrs. Farber and Abrahams have seamlessly woven two poignant personal stories of living organ donation with fascinating discussions of the flawed organ donation system in the United States. When Steve Farber, a wealthy and influential Denver attorney, realized that his kidneys were failing; he explored the possibility of traveling to Turkey for a new organ, and also contemplated whether one of his three sons could donate a kidney. Farber's story alone, fraught with indecision and family upheaval, is worth the price of this book. Farber's story is juxtaposed with that of Ernesto Delaroca and his sister, Sandra, poor Guatemalan immigrants, whose options were significantly more circumspect than Farber's. Sandra languished on the transplant list for years, walked six blocks three times per week for her dialysis treatments until finally Ernesto gave her one of his kidneys. Farber and Abrahams meticulously analyze the disparities between rich and poor in the United States when it comes to options after kidney failure.

ON THE LIST is essential reading for anyone who has been patiently waiting for years on a transplant list, living donors contemplating donating an organ, nephrologists, transplant surgeons and their support staffs, and legislators and other policymakers who deal with transplant issues. Kudos to Steve Farber and Harland Abrahams for producing such a thoughtful book that not only tells the story of two very different families approaching a living donor transplant in the context of the transplant system as it currently exists, but also explores options that could result in more people receiving precious organs.

Organ donation policy is a microcosm of American health policy as a whole -- its economics, its ethics, and the American public's struggle to balance the rights of individuals with the welfare of populations. The professional and academic literature is quite full with scholarly articles on nearly every aspect of organ donation policy, reflecting the importance and the difficulty of the subject. I have seen none, however, that translate the issues into concrete, meaningful, and even compelling human terms as well as Abrahams' and Farber's "On the List." Excerpts from the book are required reading for graduate-level Health Policy courses I teach to law and medical students and to mid-career professionals. The book makes the subject come alive. If the authors' prescriptions were followed, it might help some patients come alive as well.

Edward A. Dauer, Dean Emeritus and Professor Emeritus of Law, the University of Denver

As an avid reader of any medical material related to personal experiences, I was excited about reading this book. Also of interest to me was the prospect of needing a change in our current organ transplant system in the United States. However, the author's frequent comments regarding his social status detracted from this book. I noticed it early on in the book but wanted to give it a chance and was waiting for the point where Steve Farber would bring the immigrant donor also highlighted in this book, further into the storyline. He did so but in what seemed to be a token pattern, as if he wanted to find a connection between himself and Ernesto in their common link in organ transplantion, but never could quite bridge the gap between the class lines. Really, Ernesto's social status was irrelevant in many ways because both he and Steve ended up involved in transplantion regardless of income. But Mr. Farber never failed to mention the limo he arrived in, or dining with Bill Clinton or the VIP treatment he received at the hospital. Halfway through the book I was ready to be done but was still waiting for his awakening and letting go of his obvious narcissism. It never happened. From downscale Lakewood, Colorado to his million-dollar lifestyle, the "moral of the story" was lost. There was some useful information regarding organ transplantation but overall, the picture of a wealthy man on his journey to receiving a kidney only reminded me of why I am glad I am not in his social class wining and dining with his wife Cindy who couldn't see the forest for the trees in the gift of life her son wanted to give his father. I actually felt bad for Steve that the apparent superficial nature of his wife and friends was leading him to buy a kidney so as not to put his son in danger as a donor. As noble as that may be, it seemed to hint at the general nature of their short-sighted lifestyle. Kudos to the physician who publicly confronted him on not accepting the gift his son wanted to give him. I can only hope that the wealth and power that Steve Farber so easily attested to in this book, will be put to some use in truly transforming organ donation in this country.

While I applaud the authors for all their research on this topic, I wonder why they never did any research or visit any dialysis clinics. Mr. Farber was extremely fortunate to have had a perfect match with his son. I wish he had included some dialysis research. As a dialysis tech for seven years, I can assure you that these patients do not think of dialysis as their only hope. For many of them, dialysis is a way to stay alive until they do get a transplant and many have very active working lives.

The author's comment "sometimes I get distressed by the willingness of some patients to allow their transplants to limit them so in their activities.......use their transplants as an excuse not to work, not to play....." was a little harsh. Many transplant patients really are tired and just cannot do much because of the required medications. I can attest to this first hand because I had a husband that was on dialysis and received a kidney transplant - he was never one to use the transplant as an excuse to not do something.

I also concur with the authors that the compensated donation is the route to go. Maybe one day we will see this.

Each year 6,500 die in America waiting for organ transplants. "On The List" tells of illicit transplantation activities around the world, the author's own transplant experience, and that of an unrelated immigrant being treated at the same time. The authors see this book as a story of ethics and medicine and law gone mad, of the dramatic shortage of transplant organs, and the growth of illicit organ markets in poor Third World countries.

Shortage of donors is THE problem. Presumed consent laws in Europe have helped, but only provided a 15 - 20% improvement. The main barrier is resistance of family members after a potential donor's death, regardless of their wishes. A study of transplants using third-world paid 'donors' found that overall the donors were medically worse off afterwards, though U.S. practices have lowered donor death rates to 0.1%.

Farber (author, kidney recipient) experienced a number of post-transplant problems, most likely caused by drugs. The good news is that improvements now allow most recipients to stop using anti-rejection drugs within five years. The authors believe the answer to the donor shortage may lie in outcomes of stem cell research (long term) and a government-run compensation program for donors that assures equity.

Bottom Line: "On the List" addresses a serious problem that is not limited to just those needing kidneys. The authors' hopes and recommend ations are sound. However, the book should have been shortened to a one or two page article.