Here's a link at which you can hear Ned Brooks, on the latest episode of Donor Diaries.
"Ned is a high-profile activist for living kidney donation and the founder of The National Kidney Donors Organization. Ned’s appearance on Freakonomics podcast and his TEDx Talk on living kidney donation are often mentioned by living kidney donors as an early inspiration for their donation."
Here's a report of the experience with kidney vouchers, pioneered at UCLA and the National Kidney Registry. That's a policy that has now spread more widely, in the U.S. This paper reports data from the NKR for 2014 through January 2021, during which time 250 donors were given vouchers, 6 of which have so far been redeemed. Voucher donors start kidney exchange chains (like non-directed donors) that can later be redeemed by (e.g.) their family members.
Voucher-Based Kidney Donation and Redemption for Future Transplant, by Jeffrey L. Veale, MD1; Nima Nassiri, MD2; Alexander M. Capron, JD2,3; Gabriel M. Danovitch, MD1; H. Albin Gritsch, MD1; Matthew Cooper, MD4,5; Robert R. Redfield, MD6; Peter T. Kennealey, MD7; Sandip Kapur, MD8
JAMA Surg. Published online June 23, 2021. doi:10.1001/jamasurg.2021.2375
"Abstract:
Importance Policy makers, transplant professionals, and patient organizations agree that there is a need to increase the number of kidney transplants by facilitating living donation. Vouchers for future transplant provide a means of overcoming the chronological incompatibility that occurs when the ideal time for living donation differs from the time at which the intended recipient actually needs a transplant. However, uncertainty remains regarding the actual change in the number of living kidney donors associated with voucher programs and the capability of voucher redemptions to produce timely transplants.
...
Design, Setting, and Participants This multicenter cohort study of 79 transplant centers across the US used data from the National Kidney Registry from January 1, 2014, to January 31, 2021, to identify all family vouchers and patterns in downstream kidney-paired donations. The analysis included living kidney donors and recipients participating in the National Kidney Registry family voucher program.
Exposures A voucher was provided to the intended recipient at the time of donation. Vouchers had no cash value and could not be sold, bartered, or transferred to another person. When a voucher was redeemed, a living donation chain was used to return a kidney to the voucher holder.
Main Outcomes and Measures Deidentified demographic and clinical data from each kidney donation were evaluated, including the downstream patterns in kidney-paired donation. Voucher redemptions were separately evaluated and analyzed.
Results Between 2014 and 2021, 250 family voucher–based donations were facilitated. Each donation precipitated a transplant chain with a mean (SD) length of 2.3 (1.6) downstream kidney transplants, facilitating 573 total transplants. Of those, 111 transplants (19.4%) were performed in highly sensitized recipients. Among 250 voucher donors, the median age was 46 years (range, 19-78 years), and 157 donors (62.8%) were female, 241 (96.4%) were White, and 104 (41.6%) had blood type O. Over a 7-year period, the waiting time for those in the National Kidney Registry exchange pool decreased by more than 3 months. Six vouchers were redeemed, and 3 of those redemptions were among individuals with blood type O. The time from voucher redemption to kidney transplant ranged from 36 to 155 days.
Conclusions and Relevance In this study, the family voucher program appeared to mitigate a major disincentive to living kidney donation, namely the reluctance to donate a kidney in the present that could be redeemed in the future if needed. The program facilitated kidney donations that may not otherwise have occurred. All 6 of the redeemed vouchers produced timely kidney transplants, indicating the capability of the voucher program."
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I haven't managed to sign a data use agreement with NKR, because Stanford's policies don't allow researchers to cede editorial control of the final paper to the data owners, which NKR's agreement requires. See earlier post:
Advice from Italian doctors, on living kidney donation including kidney exchange, in the one year old journal Transplantology:
Living Kidney Donation: Practical Considerations on Setting Up a Program, by Maria Irene Bellini, Vito Cantisani 3, Augusto Lauro, and Vito D’Andrea, Transplantology 2021, 2(1), 75-86; https://doi.org/10.3390/transplantology2010008
Abstract: Living kidney donation represents the best treatment for end stage renal disease patients, with the potentiality to pre-emptively address kidney failure and significantly expand the organ pool. Unfortunately, there is still limited knowledge about this underutilized resource. The present review aims to describe the general principles for the establishment, organization, and oversight of a successful living kidney transplantation program, highlighting recommendation for good practice and the work up of donor selection, in view of potential short- and long-terms risks, as well as the additional value of kidney paired exchange programs. The need for donor registries is also discussed, as well as the importance of lifelong follow up.
"The participation of a large number of transplant centers is vital to maximise the chances to achieve better human leucocyte antigen (HLA) or age match, thus it is envisaged that even compatible pairs for their recipients are involved, in order to generate more exchange opportunities. In view of the better outcomes, it is also recommended to include HLA incompatible (HLAi) pairs in preference to antibody removal, as well as ABO incompatible (ABOi) pairs to avoid the costs and higher risks associated with desensitization programs, or at least by registering them for a number of runs in the KPD before choosing these alternative treatments [7]. This applies specifically to children, where getting a well-matched kidney as early as possible is fundamental to preserve the long-term outcome, reducing the chances of sensitisation and being dialysis-dependent in the future to the minimum.
"Other effective ways to implement KPD are the inclusion of altruistic (unspecified) donors to trigger KPD chains; multiple registrations of potential donors for a single candidate; and the extension of the length of the exchanges, potentially also considering deceased donor kidneys as chain-initiating kidneys [8]."
Last week I had the pleasure of joining the discussion of the book Kidney to Share by Martha Gurshun & John Lantos. It was on Zoom, and the recording is now available here.
Martha and John speak for the first half hour, then I make some remarks for about ten minutes, after which there is an interesting general discussion. The whole thing is an hour, and the recording allows you to hear it at 1x, 1.5x or 2x the original speed...
The Stanford Center for Biomedical Ethics is sponsoring a presentation tomorrow of a new book, Kidney to Share. It's written largely in alternating chapters, by Martha Gershun, an altruistic kidney donor, and her friend John Lantos, a doctor and bioethicist who is a member of the same synagogue. I'll join in the discussion.
Kidney to Share Book Launch Seminar With Authors Martha Gurshun & John Lantos, Wednesday, May 19, 2 - 3pm PST (RSVP )
There has been much recent discourse, and some regulatory action, about reducing the financial dis-incentives to being a kidney donor (e.g. steps have been taken to facilitate the reimbursement of out of pocket travel and child care expenses arising from donation, and even replacement of some lost wages). But this book is among the first discussions I've seen of other dis-incentives to donation, arising from procedural and logistical barriers.
In Martha Gershun's case, many of these barriers to donation arose from the fact that the Mayo Clinic, where she donated, was inconveniently far from her home in Kansas City, but Mayo insisted that all procedures and tests be conducted on-site in Rochester, Minnesota. (Some of these barriers have in fact been overcome in kidney exchange, but Ms. Gershun was making a direct donation, to a patient she had read about.)
Dr. Lantos points out that if transplant centers treated kidney donors more like the way they treat financial donors, they would have found ways to smooth some of the logistical barriers that were bureaucratically applied.
Ms. Gershun, in email correspondence with me after I had read the book, wrote:
"I was very interested in your thought that there has been some improvement in logistics over the past 20 years, since it is now easier to ship kidneys. Many of the barriers I encountered in my efforts to donate were exacerbated because we lived 6 hours from Mayo. At every stage, they were unwilling to “outsource” any part of the process to another provider (not even that sticky substance abuse appointment or processing the blood that otherwise had to be shipped on dry ice).
...
"Why couldn’t I have undergone the medical/psychological evaluation and surgery at KU Medical Center, a highly-respected transplant center just 2 miles from my house, with the kidney flown to Mayo for transplantation? You have made me think that another barrier to consider must surely be the proprietary and siloed nature of Transplant Centers. How many more transplants could we do if we eliminated the need for both donor and recipient to receive their care at the same institution? My understanding is that pairs/chains have made a lot more progress on that front than directed donations."
In a subsequent email exchange Ms. Gershun points out to me that other transplant centers accept shipped kidneys even for direct transplants from donor to recipient (with no exchange involved). (The article below, from the ABA Journal, concerns a kidney shipped from UCLA to MGH in Boston, where the transplant was performed. Both of those transplant centers have lots of inter-hospital kidney exchange experience.)
Father and daughter legal scholars complete successful kidney transplant by Stephanie Francis Ward
"Jennifer Mnookin had one kidney removed in Los Angeles on Dec. 2, and it was put on an overnight flight to Boston to be transferred Dec. 3 to Robert Mnookin, who had end-stage kidney disease. Both are doing well."
During the pandemic, Canadian kidney exchange was suspended, and organ donation was sharply reduced.
The ChronicleHerald has the story:
Organ donations down sharply during pandemic by Andrew Duffy
"Organ donations in Canada have dropped significantly during the pandemic even though COVID-19 has raised the country’s annual death toll.
"Medical officials say organ donations are down 20 to 30 per cent from pre-pandemic levels.
...
"Living donations, including kidney and liver donations, are down 30 per cent, Shemie said, while organ donations from deceased patients have dropped 21 per cent.
"There are a variety of reasons for those declines, he said, starting with the impact of the pandemic on intensive care units (ICUs). Organ donors are identified and managed in ICUs, but those units have been swamped with COVID-19 cases at various times during the past 10 months, he said. Transplant recipients also need to spend time in ICUs recovering from their surgeries.
...
"What’s more, he said, the pandemic has reduced the pool of potential organ donors because the number of people suffering devastating brain injuries has gone down. Lockdown restrictions mean fewer people are driving cars or playing sports with a resultant drop in serious injuries.
...
"More than 20,000 Canadians have died from COVID-19 during the past year, but the disease makes them unsuitable as organ donors. “There are a substantial number of people who are dying, tragically, of COVID, but because they have COVID, they can’t become donors,” Shemie said.
...
"In Italy, transplant doctors have made limited use of donated organs from COVID-19 patients. In that country, people on the transplant wait list who have survived COVID-19 are eligible to receive organs donated by people who have died with the disease, Shemie said.
...
"Canadian Blood Services recently announced that its Kidney Paired Donation program, an inter-provincial organ sharing effort, is back up and running after a temporary pause. "
The National Academies of Science, Engineering, and Medicine have formed a committee on
"Challenges exist in ensuring deceased donor organs are allocated to individuals on the transplant recipient waitlist in a fair, equitable, cost-effective and transparent manner. In response to the Consolidated Appropriations Act, 2020, the National Academies of Sciences, Engineering, and Medicine will establish an ad hoc committee to conduct a study to examine the economic (costs), ethical, policy, regulatory, and operational issues relevant to organ allocation policy decisions involving deceased donor organs. "
"On February 4-5, 2021, the committee will host a public workshop that will bring together stakeholders to explore gaps, barriers, and opportunities for improving deceased donor organ procurement, allocation, and organ distribution. Workshop presentations and discussions will examine the organ procurement process, opportunities and challenges for transplant centers, data collection and modeling, disparities and access issues, perspectives from deceased donor families and transplant recipients, and cost and economic factors."
There are now a number of ways in which an organ donation (or registration as an organ donor) can turn into a future priority for receiving an organ. Here's a paper from the January JET that looks at an overlapping generation model in which priority vouchers can be inherited by family members. The paper considers how, while this increases the incentive for the patriarch (or matriarch) of a family to register as a deceased donor, inheriting the voucher might reduce the incentive for descendants to donate, since they already have some priority on the deceased donor waiting list. The paper models how this can be avoided by giving inherited vouchers increased priority when the current recipient registers.
Organ donation with vouchers by Jaehong Kim, Mengling Li, and Menghan Xu, Journal of Economic Theory, Volume 191, January 2021, https://doi.org/10.1016/j.jet.2020.105159
Abstract: The ever-increasing shortage of organs for transplantation has motivated many innovative policies to promote the supply of organs. This paper proposes and analyzes a general class of deceased organ allocation policies that assign priority on organ waiting lists to voucher holders to promote deceased donor registration. Priority vouchers can be obtained by self-registering for donation or through family inheritance. In an overlapping generations framework, we find that extending the donor priority benefits to future generations can improve the aggregate donation rate and social welfare. In particular, giving higher priority to voucher inheritors who register for donation is always beneficial regardless of the levels of population growth and care for future generations. By contrast, the efficacy of granting priority to nondonors with inherited vouchers depends on these two sociodemographic factors because of potential free-riding incentives.
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Related post:
The program’s 3 goals are to:
Here's an announcement I received from Ned Brooks, the founder of NKDO, National Kidney Donation Organization (formerly Donor to Donor). If I understand correctly, the different talks and interviews will be available at the link after first streaming in conference style, starting at 9am Pacific time. It includes a video of Ned interviewing me.
I'll update this post as necessary.
"This Wednesday, October 21st, NKDO, National Kidney Donation Organization (formerly Donor to Donor) will release the virtual National Kidney Donor Advocate Conference. This event is designed to give volunteer living donor advocates the information they need to be more effective advocates for living donation. Transplant industry experts across the country will be presenting to you and delivering invaluable advice about their area of expertise.
The conference will stream on our YouTube channel beginning at 12:00 noon Eastern this Wednesday. The conference will be in segments and accessed through the “playlist”, either streaming as one event or accessed at different points in the conference. The link is https://www.youtube.com/channel/UCsoS-yavRQCVl7bwcjT2iCA , which will go live at noon Eastern on Wednesday.
- Have you ever wondered about the transplant surgeons who do the surgery? What
they are thinking and what they would like you to know? Dr. Joshua Mezrich,
transplant surgeon at UWMadison and author of “When Death Becomes Life: Notes
from a Transplant Surgeon” talks about his experience with organ donors and
recipients.
- Are you a living donor or a transplant recipient, or expecting to be one? Do
you remember the experience of being evaluated at the transplant center and
listening to all the information, and maybe feeling a little overwhelmed?
Living Donor Coordinator Marian Charlton and Patient Coordinator Janet Hiller
are two of the most respected voices in transplant, and they will tell you what
they want you to know to better understand the process. Anyone who goes through
this experience or has a loved one in transplant will want to see these
segments.
- Living kidney donors deserve all protections available, from reimbursement
for out-of-pocket costs and lost wages to medical coverage for medical issues
that may arise months or years after donation. Garet Hil, founder and CEO of
the National Kidney Registry, talks about the suite of protections available to
living donors through Donor Shield.
- Are you a kidney patient in need of a donor? Harvey Mysel, a two-time
kidney recipient and founder and CEO of the Living Kidney Donor Network, talks
about how to have your kidney donor find you.
- Professor Alvin Roth won the Nobel Prize in Economics for his work creating
the algorithms that contributed to the creation of the “kidney chain”, a
development that transformed kidney transplant procedures. Prof. Roth discusseshis work and the business known by the intriguing moniker of “repugnanttransactions.”
- All kidney patients will benefit by watching nephrologist Dr. David Serur
talk about kidney disease and what every kidney patient and advocate needs to
know to be properly informed about how to deal with renal disease.
- Non-directed, or altruistic, donors are a rare breed, though we are trying to
change that. No one knows the brain of the non-directed donor better than
Professor Abigail Marsh, who has been studying non-directed donors for years.
If you want to better understand why someone will happily donate a kidney to a
stranger, this presentation will help answer that question. Prof. Marsh
is the author of “The Fear Factor: How One Emotion Connects Altruists,
Psychopaths, and Everyone In-Between.”
- If you listen to podcasts, you are probably familiar with “Freakonomics”
and its creator, Stephen Dubner. It was the Freakonomics interview with Prof.
Roth that set Donor to Donor and NKDO into motion, and our interview with Mr.
Dubner will interest anyone who understands “the power of the pod”.
- Jim Gleason is a heart transplant recipient and the president of TRIO,
Transplant Recipients International Organization. Mr. Gleason is a motivational
speaker who asks the question, “Are you a cookie monster?”
The Health Resources and Services Administration (HRSA), Health and Human Services Department (HHS) has published its Final Rule in the Federal Register
"SUMMARY: This final rule amends the regulations implementing the National Organ Transplant Act of 1984, as amended (NOTA), to remove financial barriers to organ donation by expanding the scope of reimbursable expenses incurred by living organ donors to include lost wages, and child-care and elder-care expenses incurred by a caregiver. HHS is committed to reducing the number of individuals on the organ transplant waiting list by increasing the number of organs available for transplant. This final rule is associated with Section 8 of the Executive Order (E.O.) 13879 titled “Advancing American Kidney Health,” issued on July 10, 2019, which directed HHS to propose a regulation allowing living organ donors to be reimbursed for related lost wages, child-care expenses, and elder-care expenses through the Reimbursement of Travel and Subsistence Expenses Incurred toward Living Organ Donation program authorized under section 377 of the Public Health Service (PHS) Act, as amended."
...
"The National Living Donor Assistance Center (NLDAC) [4] operates the living organ donor reimbursement program funded by HRSA's Reimbursement of Travel and Subsistence Expenses Incurred toward Living Organ Donation grants program. Under the authority provided under section 377 of the PHS Act, as amended, the program is operated via cooperative agreement. The program's purpose is to help remove financial disincentives for living organ donations. In adherence to the authority outlined in the PHS Act, the program's Eligibility Guidelines currently provide that “qualifying expenses” include those incurred by the donor and his/her accompanying person(s) as part of: (1) Donor evaluation, (2) hospitalization for the living donor surgical procedure, and/or (3) medical or surgical follow-up, clinic visits, or hospitalization within two calendar years following the living donation procedure.
...
"Through this final rule, the Secretary determines that reimbursement for lost wages, and child-care and elder-care expenses incurred by a caregiver, is appropriate for living organ donors who incur such expenses toward their organ donation."
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The final rule authorizes the National Living Donor Assistance Center (NLDAC) to expand the category of expenses that it can reimburse, for those who meet its income and other conditions.
I'm on NLDAC's Advisory Board, and at the present time I haven't heard that NLDAC's budget will be increased to fund the expanded expenses it is now permitted to reimburse.
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