Non-directed organ donors and NLDAC financial support

For some years I've been a member of the advisory group of the National Living Donor Assistance Center (NLDAC) which is authorized to offer federally funded financial support (for travel, and now also for lost wages and childcare expenses) to needy donors whose recipients also cannot afford to offer such support. As kidney exchange has grown, so have the number of non-directed donors, who don't have a particular recipient in mind. In a recent email, NLDAC has defined how these donors can qualify for financial assistance.

"Defining Non-Directed Donors

"Eligibility for NLDAC depends primarily on the recipient's household income. This is because the Organ Donation and Recovery Improvement Act requires NLDAC to assess the recipient's ability to reimburse their donor before providing reimbursement with federal funding. Most donors have a particular recipient in mind, and that person is allowed to reimburse their expenses, if they are willing and able to do so. NLDAC provides reimbursement when the recipient cannot afford to provide it. Some donors do not have a recipient to ask for help, though. A non-directed donor is a living donor with no intended recipient. These donors can apply to NLDAC without recipient information because there is no identified recipient. Non-directed donors are eligible for NLDAC regardless of their eventual recipient's information, as long as the donor meets the residency requirements and applies on time. 

"Let's consider some examples:

"Tina heard on the news that there are 5,000 people waiting for a kidney transplant in her state. She called a transplant center and asked that they give her kidney to anyone who needs it, if she is approved to donate. Tina is a non-directed donor because she has no intended recipient. 

"Anthony read about a stranger's search for a living kidney donor on Facebook. Though he doesn't know the person, he would like to be evaluated as a potential donor for them. He is a directed donor because he has an intended recipient, even though he doesn't know them personally. 

"Jacqueline wants to donate to a member of her church without revealing her identity to the recipient. She is a directed donor because she has an intended recipient, though she wants to remain anonymous. 

"Esther wanted to donate to her husband, but they are not a good match. Through kidney paired donation, she donates to a stranger, and the stranger's loved one donates to her husband. Because Esther has an intended recipient who received a transplant through her donation, she is a directed donor. 

"Devin was being evaluated as a potential living donor to his uncle when his uncle received a deceased donor transplant. Devin decided he was still willing to donate even though his uncle no longer needed his organ, and asked the transplant center to give his kidney to anyone on the waitlist. Devin is now a non-directed donor because he does not have an intended recipient anymore. 

"Which of these donors can apply to NLDAC without their recipient's information? Tina and Devin, because they are donating without an intended recipient. Anthony, Jacqueline, and Esther can apply with their intended recipient, and NLDAC will keep the donor and recipient's information private. Esther would apply with her originally intended but incompatible recipient, her husband."

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All my posts on NLDAC:  https://marketdesigner.blogspot.com/search?q=nldac&max-results=20&by-date=true

National Living Donor Assistance Center (NLDAC) support for lost wages and dependent care

 NLDAC, the National Living Donor Assistance Center, is spreading the word on the new ways it can reimburse expenses incurred by living organ donors who meet a means test and have no other sources of support.  Here are two relevant pages from their recent brochure:

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Earlier post (in connection with which matching budget increases have since come through):

Sunday, September 27, 2020

Removing financial disincentives to living organ donation: HRSA publishes Final Rule

Introduction to NLDAC (the National Living Donor Assistance Center)

 I'm on the advisory board of the National Living Donor Assistance Center, which has recently gotten increased resources and mandate to financially support means-tested living kidney donors who have out of pocket expenses for travel, child care, and lost wages.  Nondirected donors are now also eligible for support. The idea is to remove financial disincentives for donation, and NLDAC aims to backstop other efforts, as a federally funded payer of last resort.

They are trying to spread the word, and have prepared a one minute video: Introduction to NLDAC

"Learn about support for people considering living organ donation. NLDAC helps eligible donors with travel, lost wages, and dependent care costs. Visit our website to learn more. Your transplant center can help you apply."

Surgery Grand Rounds at UCSF. "Kidneys and Controversies: Kidney Exchange Within and Across Borders" Oct 21 (7am PST)

 Tomorrow at dawn I'll give a seminar to the surgeons at UCSF, about kidney exchange, and the controversies it has overcome, and is overcoming.

Surgery Grand Rounds | Kidneys and Controversies: Kidney Exchange Within and Across Borders

Date: October 21, 2020 Time: 7:00am-8:00am Place: Webinar

Rishwain Visiting Speaker: Alvin E. Roth, PhD

Al Roth is the Craig and Susan McCaw Professor of Economics at Stanford University and the George Gund Professor Emeritus of Economics and Business Administration at Harvard University. He shared the 2012 Nobel memorial prize in Economics. His research interests are in game theory, experimental economics, and market design. In the 1990’s he directed the redesign of the National Resident Matching Program (NRMP) and currently is a member of the Board of Directors. He has been involved in the design and organization of kidney exchange, which helps incompatible patient-donor pairs find life-saving compatible kidneys for transplantation. He is on the Advisory Board of the National Living Donor Assistance Center (NLDAC). His work on kidney transplantation led him to become interested in repugnant transactions, and more generally how markets, and bans on markets, gain or fail to gain social support.

The University of California, San Francisco School of Medicine is accredited by the Accreditation Council for Continuing Medical Education (ACCME) to provide continuing medical education for physicians.  CME Course MGR21045

UCSF designates this live activity for a maximum of 43 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

*The above credit is inclusive of credit for all Fiscal Year 2020-2021 Department of Surgery Grand Rounds.

Disclosure declaration – No one in a position to control the content of this activity has a relationship with an ACCME-defined commercial interest. Planners  Wen Shen, MD, Julie Ann Sosa, MD, MA, Lygia Stewart, MD, and Ryutaro Hirose, MD, have stated that they have no relationships to disclose. Speaker Roth has stated that he has no relevant relationships to disclose.

This activity is supported by the Department of Surgery’s Howard Naffziger Endowment Fund.

Join Webinar: https://ucsf.zoom.us/j/252447171?pwd=MWt0bG9vTjBSZEo1UnpidXRVWWU2UT09 

Removing financial disincentives to living organ donation: HRSA publishes Final Rule

 The Health Resources and Services Administration (HRSA), Health and Human Services Department (HHS) has published its Final Rule in the Federal Register

Removing Financial Disincentives to Living Organ Donation--A Rule by the Health and Human Services Department on 09/22/2020

"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.

Lost Wages Support for Living Organ Donors Demonstration Project

HRSA (the Health Resources & Services Administration) has now funded a
Lost Wages Support for Living Organ Donors Demonstration Project.

It will be run by a consortium of organizations and administered through NLDAC (the National Living Donor Assistance Center).

NLDAC has also been running a randomized control trial sponsored by the Arnold Foundation:
Effect of Lost Wage Reimbursement to Kidney Donors on Living Donation Rates

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This is a developing story:)
Here are some of my earlier related posts

Tuesday, July 16, 2019

President Trump's Executive Order on kidney care

Monday, June 3, 2019

Steps towards reimbursing kidney donors--update from Frank McCormick

Thursday, December 27, 2018

Compensate living donors for lost wages and other expenses?

Removing disincentives to kidney donation, by McCormick et al. in J.Am.Soc.Nephrology

Here's the latest paper in an illuminating series on the costs and consequences of kidney donation and transplantation:

McCormick F, Held PJ, Chertow G, Peters T, and Roberts J.  Removing Disincentives to Kidney Donation: A Quantitative Analysis.  J Am Soc Nephrol 30: ccc–ccc, 2019. doi: https://doi.org/10.1681/ASN.2019030242 is:

https://jasn.asnjournals.org/content/jnephrol/early/2019/07/23/ASN.2019030242.full.pdf

I'm fortunate to be on McCormick's distribution list for email updates on matters related to kidney transplantation, and here's how he introduced and summarized this paper (the table of cost estimates is at the very bottom):

"Friends,

About two years ago, Economics Nobel Laureate Alvin Roth observed that since no-one in the transplant community seemed to be opposed to removing disincentives to kidney donation, the community should unite behind accomplishing that goal.  Our just-published article -- “Removing Disincentives to Kidney Donation: A Quantitative Analysis” -- lays out the consequences of pursuing that consensus objective.  It identifies seven disincentives facing living kidney donors and a single disincentive facing the families of deceased donors. 

The seven disincentives to living donors are listed in column 1 of the table below.  Columns 2 - 5 show estimates of the magnitudes of some of these disincentives made by earlier researchers.  Column 6 indicates our own best estimates of all of the disincentives, and Column 7 specifies the government actions needed to remove these disincentives without violating the National Organ Transplant Act.

Note that the disincentives to living donors total almost $38,000, which is much larger than generally assumed.  This is a substantial deterrent to kidney donation by living donors and goes a long way toward explaining why, even though about 125,400 patients were diagnosed with kidney failure in the U.S. in 2017, most of whom could have benefited from a kidney transplant, only 5,811 patients (4.6%) received a kidney from a living donor.

It follows that if the government could remove all of these disincentives by compensating donors, it could substantially boost kidney donations.  We estimate total donations from both living and deceased donors would increase by about 12,500 per year (63%).  That would cut the waiting list for transplant kidneys (currently numbering about 93,000 patients) in half in about four years.

We estimate removing all the disincentives would require an initial government outlay of only about $0.5 billion per year.  But this investment would quickly be recovered because (a) the long-run cost of transplantation is much less than for dialysis and (b) the government pays most of the costs of both.  So taxpayers would wind up saving a net $1.3 billion each year.  Much more importantly, society would enjoy a net welfare gain of about $14 billion per year, reflecting the great value of the additional donated kidneys to recipients and the savings from these recipients no longer needing expensive dialysis therapy. 

The timing of this article is fortuitous because there is currently great interest in Washington in proposals to remove disincentives to organ donation.  Indeed, on July 10, President Trump issued an executive order stating: “Within 90 days of the date of this order, the Secretary [of the Department of Health and Human Services] shall propose a regulation to remove financial barriers to living organ donation.”

               

Frank

The URL for the just published article: McCormick F, Held PJ, Chertow G, Peters T, and Roberts J.  Removing Disincentives to Kidney Donation: A Quantitative Analysis.  J Am Soc Nephrol 30: ccc–ccc, 2019. doi: https://doi.org/10.1681/ASN.2019030242 is:

https://jasn.asnjournals.org/content/jnephrol/early/2019/07/23/ASN.2019030242.full.pdf

This is the fourth in a series of articles aimed at reducing the kidney shortage and thereby saving tens of thousands of lives each year.  The previous three were:

1.             Held PJ, McCormick F, Ojo A, Roberts JP.  A cost-benefit analysis of government compensation of kidney donors.  Am J Transplant 16: 877–885, 2016.         

This article laid out in great detail (13 Supplements) all of the costs and benefits of compensating kidney donors, showing it would confer a net benefit on society of about $46 billion per year and would save taxpayers about $12 billion per year.

https://onlinelibrary.wiley.com/doi/full/10.1111/ajt.13490

2.       Held PJ, McCormick F, Chertow GM, Peters TG, Roberts JP.  Would government compensation of living kidney donors exploit the poor? An empirical analysis.  PLOS ONE, November 28, 2018. 

This article presented evidence that the poor would not be exploited by government compensation of kidney donors.  Indeed, the aggregate net benefit to the poor would increase to $12 billion per year from only $1 billion per year currently.

https://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0205655&type=printable

 

 

3.       McCormick F, Held PJ, Chertow GM.  The Terrible Toll of the Kidney Shortage.   J Am Soc Nephrol 29: 2775–2776, 2018.

This editorial argued that the shortage of transplant kidneys is causing the needless premature deaths of about 43,000 Americans each year (118 per day), the same death toll as from 85 fully loaded 747s crashing each year.  This is a much larger number than had previously been assumed. 

 https://jasn.asnjournals.org/content/jnephrol/29/12/2775.full.pdf

Table 1 Disincentives to Kidney Donation Facing Living Donors
(1) Disincentive		Estimated Magnitudes of Disincentives (Adjusted to U.S. prices and standard of living in 2017)					(7) Proposed Government Action To Remove  the Disincentive
		(2) Gaston          et al.      (2006)	(3) Becker – Elías  (2007)	(4) Rodrigue  et al.    (2016)	(5) Przech  et al.    (2018)	(6) McCormick – Held  et al.  (this study)
1	Travel to, and lodging near, a transplant center	$4,313	--	$1,945	$1,653	$3,122	Expand current NLDAC program to include donors of all income levels
2	Loss of income while recovering from surgery		$3,631	$5,118	$4,368	$5,118	Expand current NLDAC pilot program to include donors of all income levels, providing donors with a tax credit of $5,000
3	Cost of home/ dependent care	--	--	--	$5,592	$5,592	Include cost of home/ dependent care in NLDAC program, providing donors with a tax credit of $6,000
4	Risk of dying during kidney removal	$2,951	$6,723	--	--	$1,860	Provide donors with a $5 million short-term life insurance policy
5	Pain and discomfort of kidney removal	$6,414	--	--	--	$6,414	Provide donors with a tax credit of $6,500
6	Decrease in the long-term quality of life	$23,250	$10,085	--	--	$7,910	Provide donors with an insurance policy covering death, disability, and long-term health problems due to donation
7	Concern that a relative or close friend may need a kidney in the future	--	--	--	--	$7,728	Promise to provide a kidney in the future for a specific person in exchange for a donation now
Total		$36,928	$20,439	--	--	$37,745

President Trump's Executive Order on kidney care

On July 10, while I was in China, President Trump issued an executive order touching on all aspects of care for kidney patients, including dialysis and transplantation from both deceased and living donors.

Here's the text of that executive order:
Executive Order on Advancing American Kidney Health
 Issued on: July 10, 2019

Because I anticipated being potentially incommunicado when the executive order was announced, I had filed an op-ed article (giving my proxy to my coauthor Greg Segal for any necessary last-minute edits) to be published on CNN's web site, applauding the order:
The Trump administration's organ donation efforts will save lives
By Alvin E. Roth and Greg Segal
Updated 1:20 PM ET, Wed July 10, 2019

As it happens, a reporter for PBS news hour reached me by phone in China, and so I got to chime in in person:
Trump’s plan to combat kidney disease aims to save money and lives. Can it?
Health Jul 10, 2019 4:39 PM EDT


The part of the executive order that touches most closely on my work on kidney exchange is Section 8:

"Sec. 8.  Supporting Living Organ Donors.  Within 90 days of the date of this order, the Secretary shall propose a regulation to remove financial barriers to living organ donation.  The regulation should expand the definition of allowable costs that can be reimbursed under the Reimbursement of Travel and Subsistence Expenses Incurred Toward Living Organ Donation program, raise the limit on the income of donors eligible for reimbursement under the program, allow reimbursement for lost-wage expenses, and provide for reimbursement of child-care and elder-care expenses."

Regarding deceased donor transplants, Section 7 says

"Sec. 7.  Increasing Utilization of Available Organs.  (a)  Within 90 days of the date of this order, the Secretary shall propose a regulation to enhance the procurement and utilization of organs available through deceased donation by revising Organ Procurement Organization (OPO) rules and evaluation metrics to establish more transparent, reliable, and enforceable objective metrics for evaluating an OPO’s performance.

(b)  Within 180 days of the date of this order, the Secretary shall streamline and expedite the process of kidney matching and delivery to reduce the discard rate.  Removing process inefficiencies in matching and delivery that result in delayed acceptance by transplant centers will reduce the detrimental effects on organ quality of prolonged time with reduced or cut-off blood supply."

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Here is some of the news coverage:

Trump signs executive order revamping kidney care, organ transplantation By Lenny Bernstein July 10 (Washington Post);
Trump signs executive order to transform kidney care, increase transplants 
By Jen Christensen and Betsy Klein, CNN Updated 4:21 PM ET, Wed July 10, 2019

This executive order is well worth supporting, and it will need support to achieve the goals it outlines.  The Secretary of Health and Human Services has been directed to do things in fairly broad terms, and we'll have to watch carefully to see the results, which will be interpreted, contested, and implemented through multiple political/regulatory processess

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Regarding removing financial disincentives for kidney (and liver) donors, I'm on the advisory board of the federally funded National Living Donor Assistance Center (NLDAC), which has been able, under very tight constraints, to reimburse some donors for some travel expenses (see related posts here).  A minimalist interpretation/implementation of the Executive Order would be to relax some of the constraints on whose expenses and which expenses can be reimbursed, and to increase NLDAC's budget accordingly.  A more expansive interpretation would be to remove some of those constraints so that no donor would have to pay to rescue someone with kidney failure by donating a kidney.