Click here for a fact sheet for information about kidney disease and efforts to solve the organ shortage problem.
In the United States, 18 people die every day waiting for an organ donation that never comes. In 2007 alone, 9,600 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 99,000-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 meliorate 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 P. Michael Kalis.
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 zero 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.
For those patients in the U.S. who are able to hold on through the 5-years that it normally takes to receive a donor kidney, the chance to lead a productive life is interrupted three times a week by 3-4 hour long dialysis treatments. 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 are currently involved in 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 is commencing the “Solving the Organ Shortage” project in order to scrutinize the Iranian kidney procurement system, with a view to informing the debate over solutions in the United States. By sending a team of researchers to Iran, we will be able to produce a more comprehensive and objective analysis than has been produced in the past.
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 it is likely that 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 at least six regions of Iran, and in the United States.
Though it is true that Iran is the only country in which compensation to organ donors is legal, it is certainly not the only place in which such compensation occurs. Our researchers will also be taking a close look at the world’s “Black Market” for human organs, both here in the United States, and, tentatively, through a first-hand look at such systems in India and/or the Philippines.
More-specific details will be available here as the project moves forward.
Quick Facts (Kidney Disease and the Organ Shortage)
In the United States, there are 76,000 Americans on the 100,000-long organ waiting list who need a kidney. Even if every American agreed to be an organ donor when they die, Steve would probably not get a kidney. 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 76,000 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.
Today, Steve is too ill to even be listed for a kidney anymore. His chance for a kidney and a new life has passed. This year Steve and 3,000 other Americans are expected to needlessly lose their lives to kidney disease. Why “needlessly”? Because there are possible options to ease if not end the U.S. kidney shortage. This film explores those possible options.
The atmosphere is ripe for a film on this topic. 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.
In the past decade there have been several documentary films that explored the black market in kidney sales, this will be the first film to approach the issue of legal options for compensating kidney donors with anything from health insurance and medals to out-right payments for donations. Furthermore, as newspapers around the U.S. cut back and close their investigative journalism departments, the documentary film genre is growing in popularity and prominence as the preferred means of communicating about pressing political issues in the United States. Consider the popularity of films like Sicko and the growing number of documentaries made by ShowTime and HBO.
Approach
The film will tell the personal story of Steve’s struggle with kidney disease, punctuated by experts’ views and stories from other countries on how to solving the kidney shortage.
- Spain, Singapore, and other countries have presumed consent.
- Iran allows the sale of kidneys.
- In the U.S. efforts continue to work to maximize altruistic donation, and improve harvesting and organ preservation techniques.
This documentary film will be one hour to one and a half hours in length and will be released in early 2010. Film festivals and educational venues will be considered for initial distribution. Television, web distribution and viral marketing campaigns will also be considered.
Questions
A willingness to think out-side the box and objectively analyze all the options for solving the U.S. kidney shortage is needed.
- What is the true extent of the problem? Is finding ways to disqualify patients from even being listed the answer?
- Does presumed consent work? Has Spain, the model for presumed consent, lessened or solved its kidney shortage?
- How about a rewards system for donation or financial compensation? Iran is the only country in the world with a government sanctioned legal system of financial compensation for kidneys? It has had that system for 20 years. Is it working in Iran? Would such a system work elsewhere?
Film Treatment
Chapter 1 – Introduction of characters.
Steve’s story. Born in Brooklyn to a close Jewish family, he grew up with all the advantages being an American had to offer. Steve ran track in high school, went to State University College at New Paltz, New York, became an engineer, got married, and was an avid skier into his forties.
Chapter 2 – Comparing the systems / outlining the issues
A narrator or expert outlines the problems faced in the U.S. Dr. Veatch, a leading, if not THE leading, U.S. ethicist who has written several books on the organ shortage and transplantation issues has agreed to be interviewed. Other potential interviews of similar prominence are being considered. We also already have several potentially valuable interviews with staff of the National Kidney Foundation of Michigan.
Chapter 3 – Progression of illness / conflict
As the film progresses, we get to know more about Steve and his struggles. The narrative will touch on how Steve discovered his diabetes, the resulting kidney disease and the heartwarming story of his best friend giving him a kidney, how the kidney failed and Steve ended up on dialysis. Four years later, Steve is 53 and dying.
Here possible solutions are first introduced. First what has tried so far that has not worked and why. Again Dr. Veatch or a narrator to help explain the problem.
Chapter 4 – What other Countries have tried
Here some shots with translated discussion of what is happening in Spain and Singapore, perhaps include news footage of the protests against presumed consent that took place in Singapore in 2008. Interview the physician who organized and led those protests.
A description of the Iranian system. We already have all the footage we need from Iran. This is very rare and difficult footage to get, the first footage of its kind obtained by Westerners. Both a documentary film team working for HBO and PBS’ Frontline have shown interest in purchasing this footage. We are going to keep it for our own film.
Chapter 4 – Resolution
Which options should the United States pursue? The Spanish model, the Iranian model or keep tweaking the status quo? Ask Steve and others like him.
Chapter 5 – Aftermath
The film ends on a reflective note. How is Steve doing now? Include some footage of a very up-beat U.S. dialysis patient who is just beginning his treatment. What will be his fate? Does it have to be the same as Steve’s?
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?
The data will be collected into a report to be disseminated to organizations such as the WHO and its affiliates.
Karen Cantor