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January 10, 2014

Increasing the Supply of Organs for Transplantation in the U.S.

Editor’s note: This article was published under our former name, The Open Philanthropy Project. Some content may be outdated. You can see our latest writing here.

This is a writeup of a shallow investigation, a brief look at an area that we use to decide how to prioritize further research.

In a nutshell

What is the problem?

The need for transplants in the U.S. significantly outstrips the supply of organs, and the gap is growing. More than 120,000 people are now on the waiting list, and more than 10,000 people were removed in 2012 because they died or became too sick to receive a transplant.

What are possible interventions?

Our understanding is that most conventional interventions aim to increase the rate of consent for transplantation amongst eligible deceased donors and their families. Other avenues to increase the supply of organs might include expanding the class of potential deceased donors considered eligible to donate or providing incentives for living donors (which is currently illegal in the U.S.). We do not have a strong sense of the best opportunities available to a philanthropist in this area, but expect that they might focus on advocacy to permit incentives for donation or to expand the pool of potential deceased donors.

Who else is working on it?

The organ donation community appears to devote considerable resources towards attempting to increase rates of consent for deceased organ donation, but we do not know of any sizable organizations focused on expanding the pool of deceased donors considered eligible or advocating for incentives for living donors.

What is the problem?

The need for organ transplants in the U.S. does not match the current supply: 120,729 people were on the waiting list for an organ on November 1, 2013.[1] OPTN: Data Kidneys account for the vast majority of the organ shortage: 98,613 of the people on the waiting list were waiting for a kidney transplant. In 2012, 36,457 people joined the waiting list for kidneys, while only 15,939 people were removed from the wait list as a result of receiving one; 7,188 people died or became too sick to receive a kidney transplant.[2]

Statistics based on numbers reported at the time of writing:

OPTN Waiting List Additions

OPTN Waiting List Removals

Additionally, some researchers have argued that the official waiting list significantly underestimates the true need for kidney transplants due to inequalities in access.[3]“Based on our results depicted in Figure 4, there is evidence to suggest that many patients on the kidney transplant waiting list (categorized into the lowest quartile of survival expectancy) perhaps should be excluded from the waiting list as their survival would likely be limited even after … Continue reading

Matas and Schnitzler 2003 estimated that receiving a kidney transplant from a living donor saves 3.5 quality-adjusted life years (QALYs) and about $100,000 relative to remaining on dialysis, which implies that clearing the kidney waiting list could (naively) save billions of dollars and hundreds of thousands of QALYs.[4]“We found that a LURD transplant saved $94 579 (US dollars, 2002), and 3.5 quality-adjusted life years (QALYs) were gained. Adding the value of QALYs, a LURD transplant saved $269 319, assuming society values additional QALYs from transplantation at the rate paid per QALY while on dialysis. At a … Continue reading

Other organs with waiting lists include the pancreas, liver, intestine, heart, and lungs. We have not searched for estimates of the magnitude of the benefits of clearing those (shorter) lists. About 30% of all deaths on the waiting list in 2012 occurred amongst people waiting for organs other than kidneys.[5] OPTN Waiting List Removals: 6,367 people died while waiting for any organ in 2012; 4,519 died while waiting for a kidney.

What are possible interventions?

There are a number of different avenues that may increase the availability of organs for transplant.

Deceased Donors

Deceased donors are the main source of organs for transplant in the U.S., and the only source available for organs other than kidneys and liver.[6] OPTN Waiting List Removals We see two broad avenues for increasing the rate of deceased donor transplants:

Increasing the rate of consent of potential deceased organ donors. This could entail efforts to register more people as potential organ donors, or to improve practices by organ procurement organizations requesting consent from families of potential donors. Given that consent rates for eligible donors are already fairly high (~74%), the potential gains from this strategy may be somewhat limited.[7] The total US consent rate amongst eligible deaths from January to June 2013 was 73.7%. OPTN DSA Dashboard Report, ‘National Metrics’ sheet.
Expanding the criteria for potential deceased donors. Current practice in the U.S. is to only accept as potential deceased donors people who die in the hospital from devastating brain injury or after the withdrawal of life support.[8]“More than 115,000 patients are wait-listed for organs despite that there are 12,000 who die or become too ill to receive transplants annually.5 Donation after neurologic determination of death (DNDD) and live donation provide nearly all organs for transplantation, with supply falling far short … Continue reading Accepting potential donors who suffer from cardiac arrest outside of a hospital setting may greatly expand the pool of potential donors, though the practice is controversial.[9]Wall et al. 2013: “In 2006, the Institute of Medicine emphasized uDCDD [uncontrolled donation after circulatory determination of death]’s potential to increase substantially organ availability.22 Recommendations were based on published data from Spain and the United States demonstrating that … Continue reading

Living donors

Transplants from living donors currently make up about a third of all kidney transplants, a proportion that has been declining since 2004.[10]“Live-donor kidney transplantation (LDKT) accounts for one third of kidney transplants performed in the United States and continues to offer superior outcomes compared with maintenance dialysis and deceased-donor kidney transplantation for individuals with end-stage kidney disease (1). Figure 1 … Continue reading Again, we see two broad strategies for attempting to increase the number of kidneys donated by living donors:

  • Encouraging living donation by raising awareness that it is an option and reducing barriers. Efforts in this category might include training for dialysis patients about how to approach their families about the possibility of becoming living donors, promoting organ donation chains, outreach to the public about the need for living donation, or advocacy for paid time off work for donation, amongst other approaches.
  • Providing compensation or incentives to encourage living (or deceased) donation.[11] See, e.g., Matas et al. 2012 and Notes from a conversation with Sally Satel, 10/10/13. U.S. law currently prohibits receipt of any “valuable consideration” in exchange for donating an organ, so there have been no trials to assess the effectiveness of different incentives; efforts to implement incentives would likely require a change to the law.[12]“In order for incentives for organ donation to be tested in the U.S., the National Organ Transplant Act, which outlaws such incentives, would have to be amended either through a stand-alone piece of legislation or as part of some other bill.” Notes from a conversation with Sally Satel, … Continue reading Like expanding the pool of potential deceased donors to those who die of cardiac arrest outside the hospital, the prospect of using incentives or compensation to increase living donation is ethically controversial.

Opportunities for philanthropy

A philanthropist could plausibly pursue any of the strategies discussed above. We do not have a strong sense of which activities might be most effective or cost-effective, but our initial inclination is to focus on less conventional areas (i.e. incentives for donors, donation after uncontrolled cardiac death) because they appear to receive less attention and to have greater potential than the other approaches discussed.

In practice, we expect that a philanthropist supporting work on either of those issues would likely focus on advocacy and research. In the case of incentives for living donors, the primary approach would likely be to support advocacy efforts aimed at reversing the U.S. ban on exchanging “valuable consideration” for organ donation. On the front of expanding the pool of potential deceased donors to include those who die of cardiac arrest outside hospitals, a philanthropist might support further research to determine the costs and benefits of the approach, or advocacy efforts aimed at encouraging other actors in the transplant system to devote more resources to such approaches.

Because both of these areas appear to be relatively controversial within the organ donation community, we do not have much sense of the likelihood that these advocacy efforts would be successful.

Who else is working on this?

The overall organ donation community is fairly large, but our anecdotal impression is that most of the current efforts by members of the organ donation community to increase the availability of organs for donation are focused on increasing consent amongst potential deceased donors. Organizations that appear to be focused on this include Donate Life America and its affiliates in each state, and, to a lesser extent, organ procurement organizations. Our understanding is that existing efforts to encourage more living donation have focused on reducing costs and broadly encouraging living donation, and that these efforts not been sufficient to stem the decline in living donation over the past few years, but we do not what magnitude of resources have been devoted to this approach to date.[13]“We propose a multilayered approach to attenuate the decline in living kidney donation, one that engages key stakeholders–the transplant centers, the broader transplant community, and the state and national governments. Transplant centers could examine trends in their LDKT rate since 2004 and … Continue reading

There appears to be comparatively little focus on expanding the pool of deceased donors to include those who die of cardiac arrest outside of a hospital, or advocating for incentives for living donation. A few centers have pilot programs on the potential of donors who die of uncontrolled cardiac arrest, but we are not aware of any systematic efforts to promote the use of such donors.[14]“In 6 months, our team approached 9 authorized parties for cardiac arrests meeting initial screening criteria. None were eligible because all deceased lacked previous consent. The NYS Department of Health imposed this restriction to legally justify preservation team entry into private residences. … Continue reading We are not aware of any sizable organizations dedicated to advocating for incentives for living (or deceased) donors, though a variety of professional organizations and think tanks have expressed support for trials.[15]“Although no organization has a major campaign to promote incentives for kidney donations, various people and organizations are in favor of a pilot study: The Cato Institute and the American Enterprise Institute would be in favor of a pilot. Save Lives Now New York is a newer organization in … Continue reading Others, most notably the National Kidney Foundation, have opposed trials.[16]“The National Kidney Foundation (NKF) is resolutely against incentives for kidney donation. In the Congressional hearings on kidney donation of the 1990s, the NKF supported pilots of incentives for deceased donors, but in a 2000 hearing, it expressed the concern that incentives for kidney … Continue reading

Questions for further investigation

Our research in this area has been relatively limited, and many important questions remain unanswered by our investigation.

Amongst other topics, further research on this cause might address:

  • The distribution of interest group opinion on incentives for organ donors and organ donation after uncontrolled cardiac arrest.[17]Sally Satel, an advocate for incentives, characterized the distribution of interest groups as follows:“ForAlthough no organization has a major campaign to promote incentives for kidney donations, various people and organizations are in favor of a pilot study: The Cato Institute and the American … Continue reading
  • The health and economic impacts of potential policy changes to significantly increase the supply of organs for transplant.
  • The cost-effectiveness of different strategies that a philanthropist might pursue to attempt to change policies to significantly increase the availability of organs for transplant.
  • How the need for organs in other countries compares to the United States and whether investing in this issue in other countries may carry higher returns than in the United States.

Our Process

We started our investigation of this area focusing on advocacy efforts to permit incentives for organ donor, which we perceived to be a fairly important policy issue with very limited philanthropic involvement. After learning more, we decided to slightly expand the scope of our shallow investigation to focus on efforts to significantly expand the supply of organs for transplantation (rather than just incentives).

Our investigation to date has been relatively limited, consisting of three conversations with people with knowledge of the field and a brief review of the literature.[18] The only conversation for which we were able to produce public notes was with Sally Satel: Notes from a conversation with Sally Satel, 10/10/13.

Sources

DOCUMENT SOURCE
Matas and Schnitzler 2003 Source (archive)
Matas et al. 2012 Source (archive)
Notes from a conversation with Sally Satel, 10/10/13 Source
OPTN DSA Dashboard Report Source (archive)
OPTN Waiting List Additions Source (archive)
OPTN Waiting List Removals Source (archive)
OPTN: Data Source (archive)
Rodrigue, Schold, and Mandelbrot 2013 Source
Schold et al. 2008 Source (archive)
UNC Press Release 2013 Source (archive)
Wall et al. 2013 Source

Footnotes[+]