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WaitList Zero — General Support

Organization Name 
Award Date 
8/2015
Grant Amount 
$200,000
Purpose 
For general support.
Topic (focus area) 

Published: August 2015

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
  • 1.

    “The mission of WaitList Zero is to expand institutional support for living donation – to make it easy for patients to ask for a kidney and easy for donors to give. Achieving this would end the shortage of kidney transplantation, which costs as many as ten thousand lives each year in the United States.” WaitList Zero, Case Statement for LJAF, pg 1

  • 2.
    • WaitList Zero, Our Team: “Thomas has so far spent approximately 10-20 hours per week on Waitlist Zero business since leaving employment, devoting 70% of his time to patient education and 20% to One Body.”
    • GiveWell’s non-verbatim summary of a conversation with Josh Morrison and Thomas Kelly, January 28, 2015, pg 3: “Mr. Kelly has returned to graduate school, and as a result currently works about 10- 15 hours a week for Waitlist Zero in a volunteer capacity. This decision was made for several reasons:
      1. Although Waitlist Zero expects to receive more funding eventually, it wanted to ensure that it could maintain one full-time employee (i.e., Mr. Morrison) for as long as possible, rather than two full-time employees for half as long.
      2. When Waitlist Zero initially divided projects between the founders, Mr. Morrison was put in charge of the HRSA campaign, which now seems like the most promising project to continue to pursue.
      3. By returning to finish his Ph.D. now, Mr. Kelly could go on the academic job market in the fall of 2015.”
    • WaitList Zero, Our Team: “Our Founders
      Co-Founder and Executive Director: Josh Morrison
      Josh was a corporate lawyer working in Boston (Columbia B.A. 07, Harvard J.D. 2010) when he donated his kidney to a stranger in 2011. Deeply moved by the experience, he decided to join the transplant field and became General Counsel and Director of Strategic Initiatives at the Alliance for Paired Donation, a leading innovator in living donor transplant. There, he led government communications efforts that successfully reversed a Medicare decision concerning financing of living donor transplantation. He came to WaitList Zero after he and Thomas received a grant to found the organization. Josh is also on Board of Directors of Transplant Recipients International Organization.

      Co-Founder and Board Chair: Thomas Kelly
      Thomas is a PhD candidate in Political Science at UC Berkeley studying lobbying in the American political system. In graduate school, after learning about kidney paired exchange he decided to donate his kidney to start a donation chain. He also became interested in transplant policy and met Josh at a conference.”

  • 3.
    • WaitList Zero, Request for Funding, pg 1: “Although we do not believe it would be feasible to enact a policy providing frank incentives for donors, interest group consensus in the field can be marshaled for passage of transplant support policies that we believe would eventually be sufficient to close the gap. These policies might include comprehensive transplant education for the public, patients, and their families as well as a package of benefits to donors worth in the low-mid five figures.”
    • GiveWell’s non-verbatim summary of a conversation with Josh Morrison and Thomas Kelly, January 28, 2015, pg 1: “There is greater discomfort with efforts to increase living donation, even without donor incentives, than Waitlist Zero initially expected. Waitlist Zero has found that some coalition members on its HRSA campaign have been reluctant to fully support living donation. As a result, Waitlist Zero has shifted its advocacy focus from donor incentives to living donation in general. The founders believe that there are useful policies that promote living donation without using donor incentives. For example, ‘transplant support’ policies offer a middle-ground position between the controversial version of incentives and the status quo.”
  • 4.
    • WaitList Zero, Request for Funding, pg 15: “As much as one quarter of all dialysis patients are medically eligible for transplantation, but are never listed for the deceased donor transplant waiting list.”
    • Schold et al. 2007: “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 kidney transplantation. Over the study period, this group included almost 11 000 patients. Alternatively, it is also apparent from this figure that among dialysis patients not listed for transplantation, the top quartile of patients has reasonable survival expectancy and many of these nearly 80 000 patients should be listed utilizing life expectancy as the main driving factor for allocation. Therefore, the cumulative impact of listing all patients with ‘adequate’ life expectancy for transplantation would substantially increase, rather than decrease, the kidney transplant waiting list from the current level of approximately 70 000 to almost 140 000 patients accompanied by successful efforts to increase access to viable patients.”
  • 5.
    • WaitList Zero, Request for Funding, pg 6: “Most End Stage Renal Disease (ESRD) patients are essentially uneducated about transplant, which is why as many as a quarter of all ESRD patients are medically eligible for transplant yet are never listed. One education methodology, transplant professional home visits to educate patients and their families, has had two randomized control trials (RCTs) showing dramatically increased living donation compared to in-center transplant education (52%/30% and 44%/9% respectively). Requiring this kind of education for ESRD patients could more than double the number of annual living donor transplants.”
    • Ismail et al. 2014, pg 1: “Our aim was to develop and test an educational program to support well-informed decision making among patients and their social network regarding living donor kidney transplantation (LDKT). One hundred sixty-three patients who were unable to find a living donor were randomized to standard care or standard care plus home-based education. […] LDKT activities were observed for 6 months post-intervention. Patients in the experimental group showed significantly more improvements in knowledge (p < 0.001) and communication (p = 0.012) compared with the control group. The invitees showed pre–post increases in knowledge (p < 0.001), attitude toward discussing renal replacement therapies (p = 0.020), attitude toward donating a kidney (p = 0.023) and willingness to donate a kidney (p = 0.039) and a decrease in risk perception (p < 0.003). Finally, there were significantly more inquiries (29/39 vs. 13/41, p < 0.001), evaluations (25/39 vs. 7/41, p < 0.001) and actual LDKTs (17/39 vs. 4/41, p = 0.003)”
    • Rodrigue et al. 2006: “With the shortage of deceased donor kidneys and the superior clinical outcomes possible with live donor kidney transplantation (LDKT), more patients should seriously consider LDKT. However, little is known about how best to educate patients and their family members about LDKT. We evaluated the effectiveness of a home-based (HB) educational program in increasing LDKT. Patients were randomized to clinic-based (CB) education alone (CB, n = 69) or CB plus HB education (CB+HB, n = 63). Compared to CB, more patients in the CB+HB group had living donor inquiries (63.8% vs. 82.5%, p = 0.019) and evaluations (34.8% vs. 60.3%, p = 0.005) and LDKTs (30.4% vs. 52.4%, p = 0.013).”
  • 6.

    “HRSA Campaign and Living Donor Collaborative: […] Substantive Goals: As our campaign has evolved, it has developed two substantive goals: first, to redirect $3.5M in HRSA grant funding each year to living donation projects and, second, to persuade HRSA to sponsor a Living Donation Breakthrough Collaborative.

    • Grant Funding: Each year, HRSA budgets $7M for grants to increase solid organ donation. Currently, none of these grants are allowed to go to living donation projects. Last year, no new grants were offered. If grants are offered and half go to living donation projects, we expect most grants to go to transplant education efforts.
    • Living Donation Breakthrough Collaborative: In 2003, an Organ Donation Breakthrough Collaborative was sponsored by HRSA. It gathered transplant elites, set and monitored best practices, and resulted in substantial increases in donation, which we estimate at ~5K. (Total transplants in the five years between 2003 and 2007 were 48K compared to an expected 43K given the average rate of increase from 1998-2003.) We would expect similar increases from a Living Donation Collaborative.

    […]
    Patient Education: […] Policy Goals: Our goal is (1) to direct significantly more funding to these programs by clarifying Medicare reimbursement policy and (2) to build capacity for new programs by creating a Transplant Education Council to set best practices and certify adoption. Ideally, Organ Procurement Organizations (OPOs), large, well- funded nonprofits that handle deceased donation logistics, could be major vehicles of living donor education. (See the New York legislative campaign below for further discussion about creating a home visit education requirement for all transplant patients.)
    Center Adoption Target: Currently, about five transplant centers pursue some form of home visit program. We hope to expand this number to twelve in two years with at least one OPO also participating.” WaitList Zero, Request for Funding, pg 1,5,6

  • 7.

    “Although we do not believe it would be feasible to enact a policy providing frank incentives for donors, interest group consensus in the field can be marshaled for passage of ‘transplant support’ policies that we believe would eventually be sufficient to close the gap. These policies might include […] a package of benefits to donors worth in the low-mid five figures.
    […]
    Broad Support for Donor Benefits: Even those who are anti-incentive support a significant increase in benefits for donors compared to the status quo. 


    • Paying Financial Costs of Donation Is Broadly Accepted: As mentioned above, even anti-incentive literature concedes a desire to pay for the financial costs of donation, usually estimated at $5-6K on average. 

    • Strong Incentive Opponents Endorse Healthcare Provision:
      • AAKP: As part of joining our Coalition to Promote Living Kidney
Donation, the AAKP endorsed the Coalition Statement of Principles, which calls for the provision of healthcare for donors.
      • Key Figures: A leading opponent of incentives, Gabe Danovitch, co-authored an article calling for lifetime health coverage for donors along with a $5,000 payment to compensate for the inconvenience of donation.
      • The Delmonico Letter endorses ‘lifelong follow-up for all living donors, with guaranteed provision of any donation-related medical care not fully covered by donors’ own health insurance.’”

    WaitList Zero, Request for Funding, pg 1,14

  • 8.

    “We have assembled a Coalition to Promote Living Kidney Donation of ten nonprofits, (the Coalition) including leading patient groups. We have built strong relationships with both the American Society of Transplantation, the largest association of transplant professionals, which has asked us to help them recruit a patient advisory council, and Donate Life America, the umbrella group for public education about organ donation, which has spoken with HRSA on our behalf.
    […]
    We have assembled our growing Coalition of (currently) ten active member organizations, including the American Association of Kidney Patients (AAKP).
    […]
    Donor Letter of Support: We have built a contact list of living kidney donors by having over 500 sign a letter online in support of our platform. Our goal is to collect 1,000 signatures by June 1st, which would represent nearly 1% of all American kidney donors. 

    Donor Questionnaire: Over a hundred donors have submitted detailed questionnaires to us about their experience donating and how transplant policy could be improved.” WaitList Zero, Request for Funding, pg 2-4

  • 9.
    • WaitList Zero, Request for Funding, pg 2: “We have built strong relationships with […] Donate Life America, the umbrella group for public education about organ donation, which has spoken with HRSA on our behalf. […] We are currently working with the Health Resources and Services Administration (HRSA), the target of our first federal campaign, to plan a stakeholder meeting on living kidney donation.”
    • GiveWell’s non-verbatim summary of a conversation with Josh Morrison and Thomas Kelly, January 28, 2015, pg 7: “On October 14th, Waitlist Zero and other patient and donor groups (e.g., AAKP, TRIO, the Living Kidney Donor Network) sent a letter of inquiry about the grant program to HRSA. As a result, a meeting with HRSA in Maryland was scheduled in January.
      Before the January meeting, Waitlist Zero began putting together a coalition of other non-profit groups interested in promoting living kidney donation. It also ran a promotional social media campaign and organized living donors to send letters of support to Bob Walsh, Director of HRSA’s Division of Transplantation.
      The January meeting with HRSA went well. Coalition members with more government experience felt very positively about the meeting. HRSA said that it is open to reconsidering both policies and is willing to meet again in the future. Mr. Walsh emphasized that he had not been present for the decision to exclude living donors. HRSA wanted Waitlist Zero to meet next with the Advisory Committee on Organ Transplantation. Waitlist Zero requested a public meeting instead, and will likely end up having a stakeholder meeting.
      HRSA raised two main objections at the meeting:
      1. It suggested that transplant centers would pursue living donation on their own, without support from grants, because it is more profitable.
      2. Living kidney donation should not be incentivized by policy because it is a personal choice.

      Waitlist Zero hopes to grow the coalition formed around this campaign and believes it could serve as umbrella group for future advocacy efforts. Waitlist Zero is currently drafting a letter in support of living donation, and hopes to get signatures of support from the Congressional contacts of some coalition members.”

    • WaitList Zero, HRSA Social Media Strategy Memo, pg 1: “On January 16th, a coalition of organ donation advocates will be meeting with the Health Resources and Services Administration in Washington D.C. to discuss the agency’s inaction toward promoting living kidney donation. Leading up to that meeting, we’ll be initiating a social media campaign directed at HRSA to demonstrate support for our position. The effort will come from both individual supporters and our coalition of nonprofits. Individual supporters will include friends and family of coalition staff, members of coalition organizations, and people who come across the campaign and want to support our mission. Currently, our coalition of nonprofits includes AAKP, TRIO, Waitlist Zero, and LKDN, though we expect to add other members before the meeting.
      This campaign will involve a concerted social media effort that utilizes three main platforms: Facebook, Twitter, and Change.org, each explained in detail below. We will lay the groundwork for this activism over the next two weeks with the intention to publicly launch the campaign on Monday, January 12th, and continue the activity up to and including the Friday meeting (the week will be branded as ‘Living Donors Week’). This will hopefully build momentum for our cause going into the meeting, and we will plan on additional social media engagement thereafter.”
    • WaitList Zero, Draft Invitation to HRSA, pg 1: “HRSA Division of Transplantation Team,
      Collectively, the Coalition to Promote Living Kidney Donation, Donate Life America, the American Society of Transplantation, the National Kidney Foundation[, and the American Society of Transplant Surgeons] respectfully request that HRSA hold a stakeholder meeting between mid-June and mid-July to discuss living kidney donation policy. A draft agenda of the issues that we’d like to be covered during the meeting along with its general structure is attached below.
      We believe this stakeholder meeting will provide a much-needed forum for discussion on this critical and timely issue. Unfortunately, 2014 had the distinction of having the lowest number of living kidney donors since the year 2000. In that year, about 50K people were waiting for a transplant; now 100K are, implying that access to living donor transplantation has declined dramatically for those on the list. At the same time, new and more authoritative safety data about living kidney donation has recently been published, implying prompting an opportunity to reevaluate living donor policy as well as a need to disseminate updated information and best practices throughout the field.
      Clearly, HRSA has played a strong and valuable role to date in the living donation space. In particular, it has helped develop the National Living Donor Assistance Center, fostered UNOS’s kidney paired donation program, and pushed for increased follow-up care and study for living kidney donors. We appreciate HRSA’s support of living donation and therefore hope that this meeting will be the beginning of an ongoing collaboration between our community and the federal government on living kidney donation. We additionally hope that other interested federal agencies will attend and learn more about HRSA’s leading role on this important topic.
      Please let us know when you might be able to host such a meeting along with suggestions concerning the attached agenda.”
  • 10.
    • WaitList Zero, Request for Funding, pg 2: “We are currently working with the Health Resources and Services Administration (HRSA), the target of our first federal campaign, to plan a stakeholder meeting on living kidney donation. Within the next two years, we expect that campaign to result in HRSA reallocating ~$3.5 million a year in existing research funding from efforts aimed at promoting deceased donation to ones aimed at living donation, which we believe to be much more cost-effective. Within the next year, we expect the campaign to lead HRSA to launch a Living Donor Collaborative, based on the model of the Organ Donation Breakthrough Collaborative that it initiated in 2003, which resulted in about 5K additional deceased-donor kidney transplants. A Living Donor Collaborative is eminently feasible and could lead to the scale-up of extremely cost-effective interventions like home visits.”
    • GiveWell’s non-verbatim summary of a conversation with Josh Morrison and Thomas Kelly, January 28, 2015, pg 6: “HRSA is the agency within the US Department of Health and Human Services (HHS) responsible for organ donation. HRSA is in charge of the government contract with the United Network for Organ Sharing to maintain the transplant waiting list, as well as a few other contracts. HRSA’s total annual budget is about $9 billion, and the organ transplantation division has an annual budget of $25 million. Some other federal agencies are involved in kidney health as well (e.g., CMS spends about $36 billion annually treating kidney failure.)
      The goal of Waitlist Zero’s HRSA campaign is to increase living kidney donation, which HRSA has been reluctant to support in the past. The campaign asks HRSA to:
      1. Remove the exclusion on living donation from its grant-making policy. This exclusion is inconsistent with the policy of the National Institutes of Health and the Agency for Healthcare Research and Quality, both of which have given grants to support living donation.
      2. Include living donation goals in its annual performance report (issued each year on July 31st).

      The statute under which HRSA grants are issued does direct grants to support living donation. However, this statute was passed in 2003 and authorizes the grants for 5 years. While HRSA continues to receive appropriations for grants and to issue them pursuant to this statute’s language, there is some ambiguity as whether the statute’s language remains legally binding. The statute also gives the HHS secretary discretionary power in approving grants.
      In the short-term, the campaign could shift about $3 million of HRSA’s $7 million annual grant budget to living donation. Because this money would come from HRSA’s existing grant budget, it would not require extra appropriations and has not already been allocated to any other group. Living donation is currently underfunded, with only a few million dollars in the field.”

  • 11.

    “The OneBody program
    Waitlist Zero’s OneBody program aims to help kidney patients find living donors within their faith communities.
    It has been difficult to generate interest in the program from congregations. Some ministers have expressed interest, but have not gotten involved. Waitlist Zero still believes the OneBody program could be effective, but may take a long time to produce results. In March, Waitlist Zero plans to invite ministers and kidney patients to an educational kickoff brunch in Oakland to discuss the program.
    Waitlist Zero has discussed the program with advocacy groups trying to gain the support of churches in other areas (e.g. environmental issues, gay rights, veterans’ issues). During a conference at Duke University, Waitlist Zero found that it had worked on this strategy of outreach to religious groups more than any of the transplant groups present, except for Renewal (an organization that connects Jewish patients with Jewish donors). Other transplant groups have expressed support and interest in the strategy (e.g., DLA asked Waitlist Zero to share its materials on engaging religious groups).
    Waitlist Zero has contacted three health care sharing ministries (HCSMs), organizations that share health care costs among members of religious communities, about the OneBody program. Waitlist Zero thought that HCSMs might be more likely to promote living kidney donations to members because of their financial stake in the issue. So far, only one HCSM has responded, asking to discuss the issue in September.” GiveWell’s non-verbatim summary of a conversation with Josh Morrison and Thomas Kelly, January 28, 2015, pg 2-3

  • 12.

    “Transplant education reimbursement by the Center for Medicare and Medicaid Services (CMS)
    Waitlist Zero’s next policy goal is to attempt to have CMS fully reimburse transplant education programs (e.g., home visits). Mr. Kelly is investigating the current state of policy on this issue. In particular, Waitlist Zero is trying to determine whether there is currently a way for education providers to be reimbursed, e.g., if they do the proper paperwork (a consulting firm that Waitlist Zero spoke to suggested this is possible).
    Waitlist Zero expects to submit a completed proposal to CMS near the end of the second quarter of 2015. The proposal will include a letter proposing interventions and a literature review, for which CMS specifies the type of data it would like to see (e.g., randomized control trials). Waitlist Zero will ask influential people in the field to sign the application letter. This may be a particularly effective issue to mobilize around.” GiveWell’s non-verbatim summary of a conversation with Josh Morrison and Thomas Kelly, January 28, 2015, pg 5

  • 13.

    “Our goal is […] to build capacity for new programs by creating a Transplant Education Council to set best practices and certify adoption. Ideally, Organ Procurement Organizations (OPOs), large, well-funded nonprofits that handle deceased donation logistics, could be major vehicles of living donor education. […]
    Center Adoption Target: Currently, about five transplant centers pursue some form of home visit program. We hope to expand this number to twelve in two years with at least one OPO also participating.” WaitList Zero, Request for Funding, pg 6-7

  • 14.

    “For its non-directed donor education initiative, Waitlist Zero plans to locate nondirected donors, provide them with useful materials and help them create a presentation, and then secure speaking opportunities for them to talk about nondirected donation. This program is intended to:

    • Raise awareness about kidney donation (in particular non-directed donation).
    • Make non-directed kidney donation more attractive.
    • Mobilize donors as a constituency group for Waitlist Zero”

    GiveWell’s non-verbatim summary of a conversation with Josh Morrison and Thomas Kelly, January 28, 2015, pg 7

  • 15.

    “We intend to continue recruiting donors to support our policy platform, asking them to share their stories, identifying and utilizing passionate volunteers, and interviewing donors who have experienced complications or are otherwise unsatisfied. Our goal is to have an active donor membership of 2,000 (accounting for approximately 1.6% of all living donors since recordkeeping began in the U.S. in 1988) by the end of 2016. ” WaitList Zero, Request for Funding, pg 7

  • 16.

    “We intend to raise $600K to support our next two years of work, which represents our full core operational budget ($500K) along with $50K each to launch two projects that we believe will have an outsized effect on our success. (See Appendix A—Budget).” WaitList Zero, Request for Funding, pg 8

  • 17.

    “Our first state campaign will be in New York State, given our headquarters here, our good relationships with several important transplant centers and nonprofits, and our support from individuals who succeeded in passing statewide transplant legislation in the past. Our goal will be to achieve legislation within two years from when the campaign is launched (in Q3 of 2015) and to fund this campaign largely from local transplant centers and national professional
    associations (whose removing disincentives agenda will be advanced). The campaign will then serve as a model for similar campaigns in other states.
    Bill Components: We anticipate that the legislation will consist of: (1) paying lost wages and other costs of donation; (2) requiring comprehensive transplant education for all medically eligible patients; and (3) providing patients with one year of free health insurance post-donation. It may also create a living donor registry or otherwise try to integrate OPOs into living donation. We hope the bill can largely be financed by fees on interest groups benefitting from transplantation (insurers, immunosuppressant manufacturers, and transplant centers), but that approach is fairly speculative at this point.” WaitList Zero, Request for Funding, pg 8

  • 18.

    “State Legislative Campaign: Organ donation is a low-salience issue affecting a relatively small and politically marginalized community. Given the tight federal legislative window, we believe constituent pressure is needed for federal legislation to pass. Additionally, as a new organization, it will take time to build federal legislative relationships.
    Political Rationale: We believe that the best way of building local constituencies in key federal legislative districts (e.g. those of members of the relevant appropriations committees) is to conduct successful state campaigns mobilizing transplant interest groups at the state level (transplant centers, OPOs, local patient chapters, etc.) that can build relationships with federal legislators during the state campaign and then target them directly for the federal campaign. These campaigns would provide achievable wins that further our policy platform and have some substantive value. They would also create precedent and pressure for federal legislation (and ideally, evidence of effectiveness).” WaitList Zero, Request for Funding, pg 7

  • 19.

    “A major project we intend to launch in Q4 of 2015 is to hold the first living donor conference in mid-to-late 2016. We intend to use the conference to promulgate and publicize our policy platform, organize donors, and receive national media coverage. We will also tie this into political campaigns we are pursuing contemporaneously.” WaitList Zero, Request for Funding, pg 7

  • 20.

    We pursued two avenues in thinking about the cost-effectiveness of WaitList Zero’s efforts:

    • WaitList Zero estimates that the deceased donor Breakthrough Collaborative led to approximately 5,000 additional kidney donations. At 3.5 Quality-Adjusted Life Years (QALYs) per donated kidney, that would be a total impact of 17,500 additional QALYS if a Breakthrough Collaborative for living kidney donation causes an equal number of additional kidney donations. (We think that this estimate of magnitude is plausible but do not have high confidence in this estimation method.) If WaitList Zero’s program has a 10% chance of achieving that outcome, then the expected value of the program is 1,750 QALYs. If we attribute this entire impact (but no further successes) to our $200,000 grant, then that comes out to about $100 per QALY.
      • The deceased donor breakthrough collaborative led to approximately 5,000 additional kidney donations:
        WaitList Zero, Request for Funding, pg 2: “Total deceased donor kidney transplants in the five years between 2003 and 2007 were 49,191 [8668+9359+9913+10660+10591], compared to an expected 43,974 given the average rate of increase from 1998:2003 [((8668:8034)/(2003:1998)+8668)*5].”
      • 3.5 QALYs per donated kidney:
        Matas and Schnitzler 2003: “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 minimum, a vendor program would save society >$90 000 per transplant and provides QALYs for the ESRD population. Thus, society could break even while paying $90 000/kidney vendor.”
    • Rodrigue et al. 2006 estimates that the home visit program that increases living kidney donation rates by ~20 percentage points costs $365 per patient. Assuming that costs have risen to ~$500 per patient, the implied cost per additional living kidney donation is ~$2500, with benefits of ~3.5 QALYS and ~$100K of savings for the heathcare system (Matas and Schnitzler 2003). If Rodrigue et al. 2006’s result could be maintained at a larger scale and WaitList Zero could get a total of $2 million directed to these programs—which doesn’t strike us as particularly unlikely considering the $7M annual grant budget of the HRSA program their campaign is targeting and the unusual cost-effectiveness of the home visit programs—then our $200K grant would save ~3000 QALYs, for implied cost effectiveness around $100/QALY.
  • 21.

    “We intend to raise $600K to support our next two years of work, which represents our full core operational budget ($500K) along with $50K each to launch two projects that we believe will have an outsized effect on our success. (See Appendix A—Budget). We are asking the Open Philanthropy Project (OPP) for half of our two-year full budget, $300K.” WaitList Zero, Request for Funding, pg 2

  • 22.
    Core Budget
    Josh s Comp 82
    Thomas Comp 18
    Junior Staff Comp 50
    Communications Consultant 20
    Development Consultant 15
    Office 13
    Website 10
    Travel 12.5
    Events 10
    Other 20
    Total 250

    WaitList Zero, Request for Funding@, pg 9

  • 23.

    “$50K each to launch two projects that we believe will have an outsized effect on our success. (See Appendix A—Budget).
    […]
    New York Campaign: Our first state campaign will be in New York State, given our headquarters here, our good relationships with several important transplant centers and nonprofits, and our support from individuals who succeeded in passing statewide transplant legislation in the past. Our goal will be to achieve legislation within two years from when the campaign is launched (in Q3 of 2015) and to fund this campaign largely from local transplant centers and national professional
    associations (whose removing disincentives agenda will be advanced).
    […]
    Donor Conference: A major project we intend to launch in Q4 of 2015 is to hold the first living donor conference in mid-to-late 2016. We intend to use the conference to promulgate and publicize our policy platform, organize donors, and receive national media coverage. We will also tie this into political campaigns we are pursuing contemporaneously.” WaitList Zero, Request for Funding, pg 2, 7-8

  • 24.

    “Providing a full level of funding at this level would be $300K; a minimal level of funding would be $114K.” WaitList Zero, Request for Funding, pg 8