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.
1. 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 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 Additionally, some researchers have argued that the official waiting list significantly underestimates the true need for kidney transplants due to inequalities in access.3
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
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
2. What are possible interventions?
There are a number of different avenues that may increase the availability of organs for transplant.
2.1 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 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
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 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
2.2 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 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 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 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.
2.3 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.
3. 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
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 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 Others, most notably the National Kidney Foundation, have opposed trials.16
4. 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
- 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.
5. 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
|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|