WaitList Zero staff reviewed this page prior to publication.
Note: This page was created using content published by Good Ventures and GiveWell, the organizations that created the Open Philanthropy Project, before this website was launched. Uses of “we” and “our” on this page may therefore refer to Good Ventures or GiveWell, but they still represent the work of the Open Philanthropy Project.
WaitList Zero advocates for policies that promote living kidney donation. We see living kidney donation as a neglected field relative to its importance, and made an earlier planning grant to WaitList Zero. The organization has since completed the planning process and launched some initial activities. We were generally pleased with the results of the planning period.
WaitList Zero’s planned activities include promoting evidence-based methods to educate patients and potential donors to raise kidney donation rates, and advocating for donor support policies such as compensation for lost wages and provision of lifetime health insurance for people who donate. It is difficult to predict the likely impact of providing funds for these activities, especially given the difficulty of achieving policy change, but we believe that WaitList Zero’s planned activities are plausibly tractable and cost-effective ways to substantially increase living kidney donation.
Based on these considerations, the Open Philanthropy Project decided to recommend a grant of $200,000 over two years to WaitList Zero.
Please note our conflict of interest disclosure for this grant.
Although it is not currently one of our main focus areas, we view research and advocacy around increasing organ donation as an area with potentially outstanding “room for more philanthropy.” In particular, we see a promising niche for an organization devoted to finding and promoting ethical, safe, and politically tractable ways to provide benefits for kidney donors, which could have sizable health benefits while saving the healthcare system money.
WaitList Zero (waitlistzero.org), founded in 2014 by Josh Morrison and Thomas Kelly, is a US-registered 501(c)(3) advocacy organization dedicated to promoting living kidney donation.1 Mr. Morrison works full-time on WaitList Zero; Mr. Kelly returned to grad school and works on WaitList Zero on a quarter-time basis.2
In 2014, Good Ventures provided WaitList Zero a $50,000 planning grant to develop a detailed strategic plan. While the initial purpose of the planning grant was simply to support WaitList Zero in developing a strategic plan, WaitList Zero eventually decided (with our approval) that beginning to execute some pilot activities would be more informative than continuing the planning process.
WaitList Zero initially planned to promote incentives for living kidney donors, as described in our writeup of the planning grant. However, based on consultations with a variety of players in the transplantation field during the planning process, WaitList Zero decided to instead pursue a suite of “transplant support” policies that it sees as more politically achievable and ethically uncontroversial while also being likely to address much of the kidney shortage:3
- Increasing living kidney donation by educating potential recipients about transplantation and living donation. Some dialysis patients know very little about their options, and many potentially eligible recipients are not on the waiting list to receive a kidney.4 Two randomized controlled trials have found that educational home visits to renal disease patients and their families increase living kidney donation substantially (on the order of 20 percentage points).5 WaitList Zero intends to promote effective interventions by helping organizations involved with kidney patients or potential kidney donors share information about best practices, and by persuading government agencies to allocate more funding to such programs.6 We have not vetted the underlying research closely.
- Donor support policies. While explicit payment for the donation of a kidney is currently prohibited at the federal level, there are many possible donor support measures short of this that could be legal, attainable, and valuable. Examples include improved follow-up services, provision of health insurance, and compensation for lost wages.7
As described above, WaitList Zero is a young organization with a very limited track record. In its first few months of work, WaitList Zero has carried out a variety of activities:
- Building advocacy capacity, including a 12-member Coalition to Promote Living Kidney Donation that includes leading patient groups, relationships with relevant professional societies, and support for WaitList Zero’s platform from more than 500 living donors.8
- Beginning a conversation with the Health Resources and Services Administration (HRSA), the federal agency responsible for transplant policy,9 about increasing and improving efforts to encourage living donation.10
- Efforts to persuade faith community leaders to ask members of their congregations to donate kidneys to fellow members who need them.11
WaitList Zero’s future plans for its core programs include:
- Promoting best practices in patient education by clarifying that Medicare reimburses home visit transplant education programs12 and assembling a Transplant Education Council in order to establish and promote best practices in transplant education.13
- Giving non-directed kidney donors educational materials to help them promote donation.14
- Recruiting more kidney donors as members.15
WaitList Zero listed two additional projects that it plans to work on, budgeted separately from their core operations:16
- Advocating for the state of New York to provide donor support, including compensation for lost income due to taking time off work to donate a kidney.17 WaitList Zero considers this a pilot program for other state campaigns, and eventually federal campaigns.18
- Holding a living kidney donor conference.19
Case for the grant
Our primary reasons for making this grant are:
- We believe that the planning period went well. WaitList Zero not only put together a strategic plan but began to execute on it, with some success.
- WaitList Zero’s planned campaigns largely seem promising. We see its core programs as plausibly tractable and cost-effective20 ways to substantially increase the number of living kidney donations.
- We continue to believe that this area is neglected relative to its importance, and particularly lacking in advocacy capacity. We hope that WaitList Zero will be able to become a sustainable independent advocacy voice in this space.
Risks and offsetting factors
WaitList Zero is a new organization; neither it nor its founders have had the opportunity to develop long track records of success achieving policy change. In one case we received unsolicited negative feedback about WaitList Zero’s leadership. Although we are pleased with the progress that WaitList Zero has made to date, we remain uncertain about whether they are the ideal candidates for the role.
More broadly, we believe that achieving policy change is difficult, and accordingly we would not be surprised if WaitList Zero failed to achieve its policy goals during the 2-year window of this grant. Nonetheless, we see many of WaitList Zero’s goals as appearing fairly feasible in the short term, and we expect WaitList Zero to demonstrate some concrete successes during the period of this grant.
We think this grant is relatively unlikely to cause harm, though we recognize that policy advocacy efforts can carry uncertain and unpredictable consequences. One possibility we can imagine is that the existence of a funded organization in this field discourages the entry of more experienced advocates who would otherwise enter an empty field.
Budget and grant size
- $100,000 in compensation for the founders.
- $85,000 in compensation for consultants and one junior staff member.
- $65,000 for supplies, rent, travel, and other overhead expenses.
The other $100,000 in their full budget would support two individual projects (an initiative to encourage the state of New York to adopt donor support policies and another aimed at convening a national conference of living donors). 23
They told us that the minimum amount of funding necessary to maintain the organization is $114,000 per year.24
We ultimately decided to recommend a grant of $200,000 over two years to WaitList Zero. We saw this amount as enough to ensure that they would be able to continue operating for two years but small enough to require them to develop other funding sources to pursue a more ambitious agenda.
WaitList Zero is a new organization and we have not seen other major funders in this space, so we think that it is fairly likely that WaitList Zero would not continue to operate in the absence of our grant. We hope to see that change over the course of this grant.
WaitList Zero shared several documents with us in association with this grant:
- WaitList Zero, Request for Funding
- WaitList Zero, Draft Invitation to HRSA
- WaitList Zero, Campaign Description – HRSA Funding for Living Donation
- WaitList Zero, HRSA Social Media Strategy Memo
- WaitList Zero, 2015 Projects
- WaitList Zero, Case Statement for LJAF
Plans for learning and follow-up
Key questions for follow-up
- How does WaitList Zero spend its grant funds? How does this compare to its budget and expectations at the beginning of the grant period?
- What work does WaitList Zero ultimately prioritize during the period of the grant?
- Which, if any, of its campaign goals is WaitList Zero able to achieve? (E.g. is it able to launch a Transplant Education Council, or to convince HRSA to allow grants encouraging living donation within the targeted grant program?)
- To what extent is WaitList Zero able to grow and mobilize its constituency of living donors?
- Is WaitList Zero able to find other funders for its operations? Does it seem to be on the path to sustainability?
We expect to have a conversation with WaitList Zero staff every 3-6 months for the next two years, with public notes if the conversation warrants it. In addition, we expect a great deal of informal contact due to GiveWell staff members’ personal engagement (more).
We expect to provide an update on this grant after one year either by publishing public notes or by producing a brief writeup. After the grant is spent down, we plan to attempt a more holistic and detailed evaluation of the grant’s performance. However, we may abandon either or both of these follow-up expectations or perform more follow-up than planned if the circumstances call for it.
Our review process
In 2014, on our recommendation, Good Ventures awarded WaitList Zero a $50,000 planning grant to develop a detailed strategic plan. Since then, we have maintained a high level of informal engagement with the project. We have published conversation notes from a conversation that we had with WaitList Zero in January 2015.
Much of this writeup relies on information provided by WaitList Zero; we have done little independent vetting beyond our initial shallow investigation.
This is an area where some GiveWell staff members have an unusual level of personal interest and engagement. Alexander Berger donated a kidney and publicly argued for incentives for kidney donors in 2011. He and Howie Lempel informally advised Thomas and Josh as they started the planning process (for several months before they initially approached us for funding), and he has (personally) financially supported the organization. Alexander and Howie have social relationships with Josh and Thomas based on their informal advisory relationship, and Josh has stayed at Alexander’s house when he has visited San Francisco.
|GiveWell’s non-verbatim summary of a conversation with Josh Morrison and Thomas Kelly, January 28, 2015||Source|
|Ismail et al. 2014||Source (archive)|
|Matas and Schnitzler 2003||Source (archive)|
|Planning grant for work on increasing kidney donation, GiveWell||Source|
|Rodrigue et al. 2006||Source (archive)|
|Schold et al. 2007||Source (archive)|
|WaitList Zero, 2015 Projects||Source|
|WaitList Zero, Campaign Description – HRSA Funding for Living Donation||Source|
|WaitList Zero, Case Statement for LJAF||Source|
|WaitList Zero, Draft Invitation to HRSA||Source|
|WaitList Zero, Formal letter of inquiry to HRSA||Source (archive)|
|WaitList Zero, HRSA Meeting Strategy Memo||Source|
|WaitList Zero, HRSA Social Media Strategy Memo||Source|
|WaitList Zero, Our Team||Source (archive)|
|WaitList Zero, Request for Funding||Source|