We have made great strides towards finishing the book reviewing the Iranian experience. The book is entitled “Why I Sold My Kidney: True Stories from Iran” and we are in the process of sending the manuscript to publishers for consideration.
Click here for a fact sheet for information about kidney disease and efforts to solve the organ shortage problem.
Quick Facts Sheet on Kidney Disease and the Organ Shortage
In the United States, 18 people die every day waiting for an organ donation that never comes. In 2010 alone, over 9,000 patients died or became too ill to undergo surgery while waiting.
The sad fact is, this is how 1 out of every 5 people is removed from the 110,000-person U.S. Transplant Waiting List. Almost 90% of these people were in need of organs that could have been donated by living donors with relative safety. The overwhelming majority were waiting for kidney transplants — the modern surgical procedure for which involves an average hospital stay of 3-days for the living donor.
The Center for Ethical Solutions has three projects planned to study ways to ameliorate the organ shortage crisis. The first is a book by Dr. Fry-Revere and Dr. Bastani to study Iran’s purported solution to their organ shortage crisis. Another project the Center is currently working on is a documentary about life on dialysis while waiting for a kidney transplant that may never come. The third and final project the Center is currently working on involves a report about worldwide organ procurement schemes, headed by Khemaies Meskini. Read more about each project below or click on any of the following headings to jump to each of their pages: As Time Runs Out Documentary, The Iranian Study, Organ Procurement Around the World.
As Time Runs Out: The Steve Lessin Story
An Ethnographic Documentary about life on dialysis and the kidney transplant waiting list. See our 10 minute preview video of the documentary in progress.
Click here to learn about Steve and his life waiting for a kidney that never comes.
Even if every American signed an organ donor card, there’d still be a kidney shortage. 2,000,000 Americans die per year, but most are too old, sick, or dead too long before reaching the hospital to allow organ removal. Only 10,500 to 13,000 Americans die under conditions that would allow organ donation to save or improve the lives of the 90,000 or more Americans who suffer from kidney failure every year. Donor cards are for deceased donation and most people die under circumstances that make their organs unusable for transplant –people who die of cancer or of other diseases that affect major organs, or simply of old age, can’t be donors after they die even if they want to. Generally, only organs from reasonably young, healthy people who die in traumatic accidents that render them brain dead, but with their other vital organs intact, can qualify as organ donors. There are approximately 12,000 viable deceased organ donors a year, less than 1 percent of those who die annually, and these not nearly enough to meet the need of the 87,000 American’s waiting for kidneys. As baby-boomers age, the shortage is only going to get worse. By some estimates, in 2010 there will be a ten-year wait time for kidneys, twice the average of today, and longer than most people, like Steve, are able to survive on dialysis.
At the end of last year, the American Medical Association proposed a pilot project for paying donors (and/or their families) to agree to deceased organ donation and just this February, the National Kidney Foundation announced its “End the Wait” initiative encouraging an aggressive look at alternatives to the existing system of kidney allocation and procurement in the United States.
It may come as a surprise that Iran claims to have solved its organ shortage, but keep in mind: Iran was the birthplace of modern medicine. The Persian philosopher Ibn Sina’s Canon of Medicine was the premiere text studied by western medical students for nearly 700 years. Today, however, Iran’s reported successes in kidney procurement have gone largely unstudied, despite the fact that reports from inside Iran indicate an average wait of one to four-months for patients in need of a donor kidney — some 56 to 60-months shorter than the average wait in the United States. In many regions in Iran their is a waiting list to be a donor, not a waiting list to get a kidney.
In the U.S. the average survival rate on dialysis is only four years; not a good statistic given the average wait for a kidney is nearly five years. Also, life on dialysis is no walk in the park. It is very difficult to lead a productive life while on dialysis. Fewer than 15% of people on dialysis feel well enough to work. On average their schedules are interrupted three times a week by 3-4 hour long dialysis treatments; they suffer uncomfortable thirst, fluid retention, strict dietary restrictions, stiffness, headaches, stomach upset, and with time almost always develop heart conditions. Their lives go on, but their quality-of-life suffers, all because of a problem that could be solved by willing, living donors; as is reported to be the case in Iran.
With so many lives at stake, an in-depth study & analysis of the Iranian system is imperative. However, to date, there have only been two major papers discussing this system published by American researchers; both authors have advised on this project. Dr. Benjamin Hippen, who serves on the project’s advisory board, published an analysis based on what Iranians have reported in American journals. Dr. Diane Tebor performed a pilot study in one hospital while in Iran to study family planning.
No debate over solving the organ shortage in this country can be fully-informed without a clear understanding of the Iranian experience. To this end, the Center for Ethical Solutions intends to send a team of researchers to Iran, to study its kidney procurement system – the only system in the world in which compensation to the donor is permitted by law. We believe this study will provide the basis for an accurate account of the benefits and pitfalls of the Iranian system, and serve to fill a vital information gap in the debate over how to best solve the U.S. organ shortage crisis.
Project Details
The Center for Ethical Solutions commenced the “Solving the Organ Shortage” project by sending a team or researchers to Iran to scrutinize the Iranian kidney procurement system, with a view to informing the debate over solutions in the United States. The team returned from its six week trip where it visited seven major transplant regions in Iran with over 100 hours of video recorded interviews and data on over 200 transplants, mostly through direct testimonials from recipients and donors (usually financially compensated).
Analyzing the Iranian system is difficult at best, without collecting data first-hand from several regions in the country. There is no standardized or centralized form of data collection in Iran, and Iranian accounts of their own system differ because they rely on information from different sources. Almost all of the data we have on the Iranian system comes from Iranian doctors, and often reflects region-specific data. These accounts vary from one to the next, and lack any analysis as to what causes these variations. This project will try to mitigate these inconsistencies, which are reflected in the existing studies, by using identical methods for collecting data in all six regions of Iran that were visited. As of the beginning of 2011 all the video recorded interviews are transcribed and translated and Center scholars have begun their tabulation and evaluation of the results.
More-specific details will be available here as the project moves forward.
Organ Procurement Around the World
The Center is creating a report to study different schemes from countries around the world about how each country allocates organs to patients in need.
The report will try to touch on the following types of issues for each country:
- Some sense of history of kidney disease in the country, including how the country has dealt with it (timeline, commencement of dialysis and renal transplant programs, types of dialysis/procedures done, how many units/centers, level of technology, etc.).
- Relevant laws and/or policies in the country of interest relating to kidney disease (subsidies for dialysis and transplant; official or unofficial incentive programs for both living and deceased donors, especially if involving financial payment; legality of organ commoditization, etc.) Is there a specific body of law, statutes, etc. governing organ transplantation? Any punishments? Are these laws enforced?
- A snapshot of the country’s current organ procurement system and whether there are any proposed changes being contemplated to it. Also, who are the policy/decisionmakers in the country regarding transplant – is there an organ procurement agency, how much authority is wielded by the medical society? If possible, include contact information for these authorities.
- Related to the above, try to find the sources for transplanted organs – in country, out of country, living related, living unrelated, deceased. Are most of the country’s citizens transplanted in country, or do they go abroad? If they go abroad, does their government pay for it?
This information will be made available to the public on our website in the Fall of 2012.
Karen Cantor