WaitList Zero — General Support (2019)


Grant investigator: Alexander Berger

This page was reviewed but not written by the grant investigator. Waitlist Zero staff also reviewed this page prior to publication.


Open Philanthropy recommended three grants totaling $350,000 over two years to WaitList Zero for general support.

This follows our January 2018 support, which we characterized as an “exit grant” that would provide approximately 18 additional months of operating support to allow them to secure other funding. Since our last grant, we believe WaitList Zero had a surprising advocacy breakthrough,“A new Trump executive order on kidneys could save thousands of lives,” Vox, July 10, 2019 and are accordingly funding them to continue their work with a second staff member. WaitList Zero plans to use these funds to advocate for Congressional appropriations to expand the National Living Donor Assistance Center. Their goal is for an expansion to pay for lost wages for living donors, increasing the number of living donations, and reducing the number of people waiting for donated organs.

WaitList Zero — General Support (January 2018)

WaitList Zero advocating for the Transplant Support Act. (Photo courtesy of WaitList Zero)

Grant investigator: Alexander Berger

This page was reviewed but not written by the grant investigator. WaitList Zero staff also reviewed this page prior to publication.

The Open Philanthropy Project recommended a grant of $100,000 to WaitList Zero for general support. We previously recommended a $50,000 planning grant in 2014 and a $200,000 general support grant in 2015 to WaitList Zero. This new funding represents an “exit grant” that will provide WaitList Zero with approximately 18 additional months of operating support to allow them to secure other funding.

Sources

Document Source
WaitList Zero, Exit Grant Funding Proposal, 2017 Source

WaitList Zero — General Support

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.

The cause

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.

The grant

The organization

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

Track record

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

Planned activities

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

WaitList Zero aims to raise $600,000 over 2 years; it requested half of that from us.21 WaitList Zero envisions a $250,000 per year “core operating budget” in the fully funded scenario, including:22

  • $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.

Grant documents

WaitList Zero shared several documents with us in association with this grant:

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?

Follow-up expectations

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.

Disclosure

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.

Sources

DOCUMENT SOURCE
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

Waitlist Zero — Planning Grant

The grant recipients 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.

Although it is not currently one of our main focus areas, we have identified advocacy around increasing organ donation as an area with potentially outstanding “room for more philanthropy.” In particular, we see no substantial organizational capacity devoted to finding and promoting ethical, safe, and politically plausible ways to provide benefits for kidney donors, which could have sizable health benefits while saving the healthcare system money.

Thomas Kelly and Josh Morrison, who are considering starting an organization to advocate on this topic, approached us to consider funding their work for a planning period of 4 months. The brief proposal they submitted is available here.

 

Thomas is a political science graduate student who is planning to donate a kidney this fall, while Josh is a kidney donor and lawyer who worked at the Alliance for Paired Donation until leaving to work on this project full time.

“Thomas Kelly—Thomas is a PhD Candidate in Political Science at UC Berkeley where he studies American politics. His current research focuses on lobbying and advocacy, particularly the differences in lobbying between public and private providers of government services. He completed his BA in Economics and Political Science at the University of Michigan in 2010. He is planning to donate a kidney to start a “chain” of kidney donations in Fall 2014.
Josh Morrison– Until recently, Josh was General Counsel and Director of Strategic Initiatives at the Alliance for Paired Donation, a leading innovator in living kidney transplantation. He also serves as Co-Chair of the Transplant Recipients International Organization Youth Circle. Prior to that he worked as a life sciences attorney at Ropes & Gray, a law firm in Boston. He received his B.A. from Columbia University and his J.D. cum laude from Harvard Law School, where he was an editor of the Harvard Law Review. He is the co-author of a forthcoming article in the Journal of Law and Contemporary Problems, State Organ-Donation Incentives Under the National Organ Transplant Act. He donated a kidney in December 2011.”

 

This is an area where GiveWell staff have an unusual level of personal interest and engagement. Senior Research Analyst Alexander Berger donated a kidney and publicly argued for incentives for kidney donors in 2011. Along with GiveWell Research Analyst Howie Lempel, he has been informally advising Thomas and Josh as they’ve started the planning process (for several months before they approached us for funding), and he is (personally) a financial supporter of the project. 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 visits San Francisco.

The proposal requests $50,000 to pay Josh and Thomas to leave their jobs and spend four months developing a plan for an organization to develop and promote policies that would use public benefits for kidney donors to eliminate the waiting list.

“It should be possible to provide public benefits to donors, perhaps along the lines of the GI Bill, so that their gift are valued as a public service while not being treated as a commodity. Doing so should allow patients to feel comfortable asking their loved ones to donate and bring enough donors into the system so that no one will need to die because they couldn’t find a transplant.
In spite of the potential benefits of these policies, we are not aware of any concerted efforts by major existing organizations to develop, promote, or ensure the passage of such policies. We would like to spend September-December of this year conducting research and developing a detailed plan to launch an organization focused on remedying the shortage. We aim to generate a strong theory for how to achieve the desired policy change, to test and refine it based on feedback from leaders in the field of transplantation and people with nonprofit and advocacy leadership experience, and develop a detailed plan for the resources (human and financial) required to succeed. We have already raised $20,000 from “friends and family,” and we would be able to leave our full-time jobs and dedicate our time fully to this project for the proposed 4-month period with further outside funding of $50,000.”

The key deliverable from the project would be a detailed plan for such an organization, including a convincing theory of change and an assessment of the human and financial resources required to execute it;

“We aim to generate a strong theory for how to achieve the desired policy change, to test and refine it based on feedback from leaders in the field of transplantation and people with nonprofit and advocacy leadership experience, and develop a detailed plan for the resources (human and financial) required to succeed.”

we also hope to see evidence of support or buy-in from relevant constituencies (e.g. funders, patients, transplant groups). They have applied for 501(c)3 status for an organization they’ve created called Wait List Zero, but an I.R.S. decision is still pending, so the funds they are requesting would go through Save Lives Now New York, which would act as a fiscal sponsor.

“We have applied for 501(c)3 status as Wait List Zero, but while that application is pending, we have an agreement to receive fiscal sponsorship from Save Lives Now New York Foundation, Inc.”

While it is generally difficult to assess what would happen in the absence of a grant, we see this case as unusually clear: GiveWell staff have spent a substantial amount of personal time discussing and investigating the issue, and believe there are no other institutional funders devoted to this space and no organizations serving the role that the one envisioned in this proposal hopes to serve. We do not think that the project considered here would happen in the absence of a grant from us.

Our primary reasons for making this grant are:

  • The project is aiming to address a problem that we think is under-resourced and reasonably important. We see this project as overlapping substantially with the work that we would want to do internally if we were to investigate this cause more deeply, and Alexander and Howie’s high level of personal involvement means that we expect to be able to learn from the project with a limited commitment of official GiveWell time.
  • A fairly small planning grant gives us the opportunity to learn more about the potential returns to an advocacy organization working on this topic, and about Josh and Thomas, without committing to supporting the resulting effort.
  • Providing early funding for an organization often seems to contribute to its success disproportionately to the amount of money involved, especially when a funder has personal knowledge of the recipients. (We certainly feel that this characterizes our experience at GiveWell.)

We would consider this grant minimally successful if it leads to a substantial increase in our knowledge of the field and a clear decision about whether or not we see the plan that is developed as being worthy of support, even if the answer is no, since we see it (to a large extent) as buying ourselves valuable information. That said, the grant could still readily fail if we don’t learn enough to be able to make an informed decision, and it would clearly be preferable that it result in an outstanding giving opportunity.

Based on these considerations, Good Ventures decided to grant $50,000 to support the project.

Because Alexander and Howie are personally involved as advisors, we expect to have an unusually high level of informal engagement and follow-up for this grant. We do not expect all of that to be public, but our minimal expectation is that the project’s formal output will be shared publicly (including here) and that we will do a (potentially brief) formal writeup at the conclusion of the grant period reflecting on what we learned.

Read more:

Sources

Document Source
Project Proposal Source