How Do Financial Obstacles Affect Decision-Making Among Potential Living Organ Donors?

 Here's a report on the effects of helping living organ donors with their expenses.

Mandell, Rebecca J., Abigail R. Smith, Kimberly A. Gifford, Barry A. Hong, Nathan P. Goodrich, Amit K. Mathur, Melissa A. Fava, Akinlolu O. Ojo, and Robert M. Merion. "How Do Financial Obstacles Affect Decision-Making Among Potential Living Organ Donors?" Progress in Transplantation (2024): 15269248241268679.

Abstract: Introduction: Living donation increases the organ supply, but associated non-medical expenses can disincentivize donation. Programs aimed at increasing living donation need to better understand how financial obstacles, including lost wages, impact the decision to pursue donation. Methods/Approach: Forty-eight interviews were conducted and analyzed using a grounded theory approach. Findings: Three key themes were identified that influenced decision-making: emotional attachment, temporal flexibility, and job security. These themes emerged when dividing interview participants into 3 groups: close relationship donors, broader network donors, and non-directed donors, representing donation to a family member or friend, a specific person they do not know well or at all, or a non-specified individual, respectively. Most close relationship donors wanted to donate regardless of personal financial cost, based on emotional attachment to the recipient. Wage reimbursement did not typically affect their decision-making but could reduce stress. Since non-directed donors did not donate to a specific individual, they could wait to achieve financial stability before donating, if needed. While wage reimbursement might create more proximate stability, non-directed donors had the flexibility to postpone donations until they could independently achieve financial stability. Lacking emotional attachment and temporal flexibility, broader network donors were particularly active decision-makers and most influenced by wage reimbursement. Across all groups, donors with job security were more resolute about donating. Conclusion: The findings underscore the importance of lost wage reimbursement to facilitate donation and reduce stress, and policies to protect donor job security."

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Related posts:

Thursday, March 31, 2022

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

Saturday, September 17, 2022

Non-directed organ donors and NLDAC financial support

National Living Donor Assistance Center (NLDAC): I rotate off the advisory board

 After seven years, I'm rotating off the advisory board of the National Living Donor Assistance Center (NLDAC). During that time, NLDAC's ability to assist living donors increased substantially, and now includes some reimbursement for lost wages, for example.

 At our meetings I learned to appreciate some of the subtleties involved in the interaction between government regulation and organ transplantation.

Liver exchange pilot program at UNOS

 In another step for liver exchange, here's the announcement from UNOS, which recently registered its first patient-donor pair:

UNOS launches first national liver paired donation pilot program

"An innovative approach to matching livers to patients in need aims to increase lifesaving transplants by expanding the number of living liver donations. United Network for Organ Sharing (UNOS) has launched the UNOS Liver Paired Donation (LPD) pilot program, the first nation-wide initiative facilitating liver paired donation matches; the project is led by UNOS Labs in collaboration with transplant and donation professionals from across the country.

"More than 10,000 people are currently waiting for a liver transplant, and increasing paired donation can make a difference. “The community recognized a critical need,” said Ruthanne Leishman, who manages UNOS paired donation programs. “While the idea of swapping livers is new, transplant programs have successfully been swapping kidneys since 2002.” Leishman was part of the UNOS team that initiated the Organ Procurement and Transplantation Network (OPTN) Kidney Paired Donation (KPD) pilot program in 2010, at a time when there were fewer living liver donor transplants. Since that time, living liver donations have become safer and more viable, contributing to the development of living liver donation programs throughout the country. There were 603 living liver donor transplants in the United States in 2022.

"The UNOS LPD pilot program includes 15 experienced transplant programs across the country who have together performed hundreds of living liver transplants over the years. “UNOS Labs has collaborated with a team of some of the most respected transplant professionals in the country. Working with this high caliber of transplant professionals has helped UNOS build a strong program that will increase living donor transplants,” said Leishman.

"While some transplant hospitals have swapped livers within their own or neighboring hospitals, the UNOS LPD program now makes it possible to swap livers across the country. The larger pool of potential living donors means candidates can have increased access to living liver donations, and transplant hospitals have the opportunity to grow their living transplants programs through collaboration.

"The first donor and recipient pair registered in the program are at UCHealth Transplant Center in Aurora, Colo., and are waiting for a match.

“The UNOS LPD program has totally shifted our frame of mind,” says Jaime Cisek, Living Donor Coordinator at UC Health Transplant Center. “It used to be that if someone was incompatible because of their blood type, or there was a significant size discrepancy, then there was no point in working them up. Now, nobody is off the table. Now we’re able to consider that there is somebody out there who is compatible and make that swap.”

"The UNOS LPD program offers living liver donors assistance with both medical and non-medical expenses related to donation, such as travel expenses, lost wages and dependent care. This financial assistance was made possible through a partnership with the National Living Donor Assistance Center (NLDAC) and a generous gift from living liver transplant recipient and UNOS financial supporter David Landes. "

New York State's Living Donor Support Act (LDSA, S. 1594) was signed by Governor Hochul on Dec. 29

 Frank McCormick forwards this email:

From: Elaine Perlman

Sent: Thursday, December 29, 2022 5:44 PM

Subject: Governor Hochul Has Signed the Living Donor Support Act!

 "Hello!

I am delighted to inform you all that the New York State's Living Donor Support Act (LDSA, S. 1594) was signed by Governor Hochul today.

 New York is becoming the best state for organ donation!

 Thank you for your advocacy in support of this legislation. The LDSA will save more New Yorkers' lives.

 Waitlist Zero's Executive Director Josh Morrison wrote the legislation. State Senator Rivera from The Bronx and Assembly Member Gottfried from Manhattan sponsored the bill.

 This spring, a team from the NKDO, NKF, DOVE, LiveOn New York, and Waitlist Zero lobbied for the bill's passage in Albany. Soon after, the LDSA was unanimously passed by both houses.

 This new law creates the opportunity for New York's living donors to avoid going into debt to donate. Living donors will be reimbursed for their lost wages and out-of-pocket expenses. New York will be the first state in the country to offer this opportunity for donation to be cost neutral for donors.

 Currently the Federal Government only reimburses when both the recipient and donor make less than 350% of the poverty line (around $47,000). The LDSA will reimburse the lost wages of donors who make up to $125,000 as well as the costs of donation (travel, childcare, etc).

 In addition, the LDSA will ensure that all potential recipients will be educated about transplantation.

 There are currently 8,569 people on New York's transplant wait lists, 7,234 of whom are awaiting a kidney. With the LDSA, we anticipate that far more New Yorkers will benefit from a living organ donation.

Here is the press release.

On Tuesday, January 3rd from 4-5pm ET, we will have a virtual celebration and toast the passage of the LDSA! Here is our zoom link.

Please share this good news far & wide!

Best,

 Elaine

Director, Waitlist Zero "

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Because the National Living Donor Assistance Center (NLDAC) is a payer of last resort, the NY law will replace NLDAC for NY donors who do meet the means test, and so it will also allow the NLDAC budget to go further.

********

Update: Frank McCormick writes to alert me that, like the authorization for NLDAC,  the NY State law (https://www.nysenate.gov/legislation/bills/2021/S1594) "requires that the Program shall be payer of last resort..." I hope that this doesn't turn into a competition to be the payer of last resort in a way that might cause some NY donors to fall between the cracks, and not be reimbursed either by NLDAC or the State of New York.

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."

************

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:

***********

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."

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."

*************

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

***********
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?

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."

***************

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

*************

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.

Steps towards reimbursing kidney donors--update from Frank McCormick

 I've written before about NLDAC, the federally funded National Living Donor Assistance Center, which operates under many regulatory constraints. (I'm on their advisory board.)

Frank McCormick brings us up to date on recent steps to relax some of those constraints.  Below I quote from his recent email:

"Since 2007, the federal government has had a program to reimburse low income organ donors for their travel and lodging expenses.  This program is currently administered by National Living Donor Assistance Center (NLDAC) at the University of Arizona.   The Secretary of Health and Human services (HHS) has the legal authority to administratively expand the mandate of this program.  Toward that end, the Office of Information and Regulatory Affairs (OIRA) in the Office of Management and Budget (OMB) has just scheduled a new rule change:

Title: Removing Financial Disincentives to Living Organ Donation 

Abstract: This proposed rule would amend the Organ Procurement and Transplantation Network (OPTN) final rule to further remove financial barriers to living organ donation by expanding allowable costs that can be reimbursed.  The changes would apply to specified incidental nonmedical expenses incurred toward living organ donation. 


2. The second front is centered on the Advisory Committee on Organ Transplant (ACOT), a non-government committee that advises the Secretary of HHS on organ transplant matters.  At its meeting on May 20, the committee heard a very informative presentation by Robert Merion of NLDAC: 

A key part of the presentation was NLDAC’s Vision for Expansion:
1. Expand eligibility for reimbursement to donors with incomes up to 500% of the federal poverty guidelines (it is currently 300%)
2. Waive income verification for donors needing less than $500
3. Approve applications from non-directed donors (i.e., living donors who do not have a specific intended recipient)
4. Reimburse wages lost due to organ donation
5. Reimburse child care/elder care expenses due to organ donation
6. Require NLDAC information to be given to all recipients and donors

ACOT endorsed the first five recommendations and forwarded them to the Secretary of HHS. "

Compensate living donors for lost wages and other expenses?

It seems like an idea whose time should come, and for which there's growing support:

One simple change the government could make to encourage kidney donation
Donors often forgo wages for a couple weeks to save a life. That can be fixed.
By Dylan Matthews

"there’s a group that helps people with the travel costs associated with donating. It’s called the National Living Donor Assistance Center (NLDAC), and it’s funded by the federal Department of Health and Human Services (HHS), which administers Medicare. But the group helps a relatively small number of donors.
...
"NLDAC can pay for “travel, lodging, meals, and incidental expenses,” but barring regulation from the HHS, it can’t reimburse lost wages or pay for child care for donors. The group is currently running a randomized controlled trial, funded by the Laura and John Arnold Foundation, in a handful of transplant centers where it does reimburse for lost wages to see if offering that increases living donations.

"But NLDAC could adopt that policy nationally, right now, with a simple regulatory change. No action from Congress would be required, according to NLDAC’s own analysis. The HHS can, on its own, issue a rule permitting NLDAC to reimburse lost wages and child care expenses. And randomized trial aside, we already have strong reason to think that reimbursing lost wages would significantly increase donations.
...

"Waitlist Zero has been pushing this change, and Rep. Matt Cartwright (D-PA), a leader in Congress on kidney issues, is on board. Curiously, the National Kidney Foundation, perhaps the most high-profile nonprofit working on kidney issues, has declined to back this modest change. Troy Zimmerman, the group’s vice president of government relations, told me on the record that the group “supports the concept of paid leave for living donors but has not taken a position on this specific proposal.”

Their reluctance to vocally support this move is puzzling and frustrating. Letting NLDAC cover lost wages is a very modest change that would clearly help people, and move us closer to a world where there are finally enough donors to end the waitlist of people whose lives depend on a kidney transplant."

**********

Here are some earlier posts about NLDAC (I've been on their advisory board since 2016):

Saturday, July 21, 2018  Effects of removing some financial dis-incentives to kidney donation through the National Living Donor Assistance Center (NLDAC)

Tuesday, October 3, 2017  The effect of paying the travel expenses of living kidney donors: Schnier et al. on NLDAC

Thursday, December 22, 2016 NLDAC announces a trial of Lost Wages Reimbursement for Living Organ Donors (funded by the Arnold Foundation)

Tuesday, September 27, 2016 National Living Organ Donor Assistance Center (NLDAC)

Effects of removing some financial dis-incentives to kidney donation through the National Living Donor Assistance Center (NLDAC)

Here's a recent paper looking at NLDAC. (I'm on their advisory board.)
It might help make the case for yesterday's proposed legislation...

Clinical Transplantation

 Volume 32, Issue 7

ORIGINAL ARTICLE

Full Access

Return on investment for financial assistance for living kidney donors in the United States

Amit K. Mathur 

Jiawei Xing 

David M. Dickinson 

Patricia H. Warren 

Kimberly A. Gifford 

Barry A. Hong 

Akinlolu Ojo 

Robert M. Merion

First published: 08 May 2018

https://doi.org/10.1111/ctr.13277

Abstract

Background

The National Living Donor Assistance Center (NLDAC) enables living donor kidney transplants through financial assistance of living donors, but its return on investment (ROI) through savings on dialysis costs remains unknown.

Methods

We retrospectively reviewed 2012‐2015 data from NLDAC, the United States Renal Data System, and the Scientific Registry of Transplant Recipients to construct 1‐, 3‐, and 5‐year ROI models based on NLDAC applications and national dialysis and transplant cost data. ROI was defined as state‐specific federal dialysis cost minus (NLDAC program costs plus state‐specific transplant cost), adjusted for median waiting time (WT).

Results

A total of 2425 NLDAC applications were approved, and NLDAC costs were USD $6.76 million. Median donor age was 41 years, 66.1% were female, and median income was $33 759; 43.6% were evaluated at centers with WT >72 months. Median dialysis cost/patient‐year was $81 485 (IQR $74 489‐$89 802). Median kidney transplant cost/patient‐year was $30 101 (IQR $26 832‐$33 916). Overall, ROI varied from 5.1‐fold (1‐year) to 28.2‐fold (5‐year), resulting in $256 million in savings. Higher ROI was significantly associated with high WT, larger dialysis and transplant costs differences, and more NLDAC applicants completing the donation process.

Conclusions

Financial support for donor out‐of‐pocket expenses produces dramatic federal savings through incremental living donor kidney transplants.

The effect of paying the travel expenses of living kidney donors: Schnier et al. on NLDAC

The National Living Donor Assistance Center (NLDAC) can only give a very little money to economically deprived kidney donors who are donating to economically deprived recipients. But that has an effect. Here's a recent paper:

SUBSIDIZING ALTRUISM IN LIVING ORGAN DONATION
Kurt E. Schnier, Robert M. Merion, Nicole Turgeon and David Howard, Economic Inquiry
Version of Record online: 30 AUG 2017
DOI: 10.1111/ecin.12488

Abstract
The current supply of deceased donor organs is insufficient to meet the growing demand for transplantable organs. Consequently, candidates for kidney transplantation are encouraged to find a living donor. In 2008, the Department of Health and Human Services began to reimburse donors' travel-related expenses via the National Living Donor Assistance Center (NLDAC). Using variation in transplant centers' applications for donor assistance, we use a difference-in-difference model to estimate the relationship between the NLDAC and living donor kidney transplants. We find that among participating transplant centers, the program increased the number of living donor kidney transplants by approximately 14%.

NLDAC announces a trial of Lost Wages Reimbursement for Living Organ Donors (funded by the Arnold Foundation)

Here's some good news in an email that arrived yesterday from NLDAC, the National Living Donor Assistance Center (about which I have had several recent and not so recent posts).  Up until now, NLDAC has only been able to provide travel assistance to some means-tested kidney donors. The new trial will allow the effect on donation of also reimbursing lost wages.

Lost Wages Reimbursement for Living Organ Donors Trial Announced

FOR IMMEDIATE RELEASE Media Contact: Diane Mossholder 703-414-7870 diane.mossholder@asts.org   Arlington, VA – December 21, 2016: The National Living Donor Assistance Center (NLDAC) announces that it will conduct a randomized controlled trial that will assess the impact of interventions intended to remove financial barriers to living organ donation through wage reimbursement.  NLDAC was established in 2007 to administer a grant funded by the U.S. Health Resources and Services Administration to provide greater access to transplantation for persons who want to donate, but cannot afford the travel and subsistence expenses associated with donation. It currently provides travel and subsistence funds for nearly 1000 people per year who wish to become living organ donors to offset their expenses related to donation. Living donors usually travel at least three times to the transplant center and are required to stay near the hospital for up to two weeks after the transplant surgery for monitoring. They are unable to work during their donation and recovery time, and the loss of wages can be a significant financial barrier. This study will provide data to help answer the question of whether removing that barrier increases living donation in the United States. The Laura and John Arnold Foundation provided funding for the trial, which will be administered by the American Society of Transplant Surgeons in partnership with the Arbor Research Collaborative for Health, with additional researchers from University of Arizona, the Wharton School of the University of Pennsylvania, and Mayo Clinic Arizona.  Five transplant centers with active living donor transplant programs will participate in the trial. “Removing financial disincentives to organ donation has long been a goal of ASTS,” said Timothy L. Pruett, MD, president of the American Society of Transplant Surgeons (ASTS). “I’m pleased that we are able to conduct this trial and gather data on the extent to which the prospect of lost wages discourages donors from coming forward or even being asked to consider donating. With more than 120,000 people waiting for an organ in the United States, we must do everything possible to ensure that those willing to donate are able to do so without financial harm to themselves or their families.” “Our study design – potential transplant recipients will be randomly offered or not offered wage reimbursement for their donors – incorporates a high level of scientific rigor,” noted Robert M. Merion, MD, president and CEO of Arbor Research Collaborative for Health. “When the study is completed, we will know much more about the role played by lost wages as a barrier to living organ donation, and the extent to which removal of that barrier leads to more living donor transplants and improved lives for patients. We are delighted that the Laura and John Arnold Foundation has recognized the societal importance of this question.” The trial will begin in 2017 and is projected to run through 2018. ### About NLDAC The National Living Donor Assistance Center (NLDAC) was established in 2007 to provide greater access to transplantation for persons who want to donate, but cannot otherwise afford the travel and subsistence expenses associated with donation. The program is funded by grant number U13HS07689 from the Healthcare System Bureau, Health Resources and Services Administration, U.S. Department of Health and Human Services. It is administered by the American Society of Transplant Surgeons, University of Arizona Health Sciences, Arbor Research Collaborative for Health, Washington University – Missouri, and Mayo Clinic – Arizona. For more information, visit LivingDonorAssistance.org.   About ASTS Established in 1974, the American Society of Transplant Surgeons (ASTS) is the oldest abdominal organ transplant society, serving approximately 1,800 surgeons, physicians, scientists, pharmacists, coordinators, and advanced transplant providers. ASTS is committed to fostering the practice and science of transplantation and guiding those who make policy decisions by advocating for comprehensive and innovative solutions to the needs of our members and their patients. ASTS is a nonprofit organization in Arlington, Virginia. For more information, visit ASTS.org. About Arbor Research Arbor Research Collaborative for Health is committed to improving patient care through research that shapes medical policies and practice. In particular, Arbor Research conducts health outcomes research on chronic disease and end-stage organ failure, with expertise in biostatistical analysis, clinical practice, health economics, public policy, database management and integration, and project coordination. Through research projects that are national and global in scope, Arbor Research’s scientific collaborations provide valuable and timely information to the worldwide health care community. A full description of the project portfolio is available at ArborResearch.org.   About the Laura and John Arnold Foundation LJAF is a private foundation that is working to improve the lives of individuals by strengthening our social, governmental, and economic systems. It has offices in Houston, New York City, and Washington, D.C. www.arnoldfoundation.org.

National Living Donor Assistance Center (NLDAC) Links

If someone you know in the U.S. needs travel assistance to be a living kidney donor, let them know about NLDAC:

National Living Donor  Assistance Center

Each year, the NLDAC Advisory Group meets to review program information and make recommendations for improvements. This year, the Advisory Group meeting was led by their new chair, Zoe Stewart, MD, PhD, MPH. We would like to thank this dedicated group of volunteers for their time and expertise: Brenda Dyson; Cathy Garvey, RN, BA, CCTC; Adam Gray, LCSW, CCTSW;  Maryl Johnson, MD; Marie Morgievich, BS, BSN, MSN, CCTC; Lisa Morrison, Kay Payne, PhD; Al Roth, PhD; Jennifer Steel, PhD; Jane Tan, MD, PhD, MS; Betsy Walsh, JD, MPH; Errol Williams; Alexander Wiseman, MD; Warren (Kip) Wright, MSW, LCSW; Mesmin Germain, MPH, MBA (Ex Officio); and Frank Holloman (Ex Officio).  NLDAC Advisory Group and Program Team Members  September 30th, 2016 Arlington, VA NLDAC Survey Comments - September 2016 "I am so appreciative that this program exists to help the process run smoothly!! Thank you SO very much!"-Living Donor, Methodist Specialty & Transplant Hospital, San Antonio, TX "Over all this was wonderful experience and I would do it again if was able."-Living Donor, Walter Reed Army Medical Center, Bethesda, MD "Very helpful - would have been very difficult financially without the help."-Living Donor, Rochester Methodist Hospital - Mayo Clinic, Rochester, MN "You guys were amazing. I could not have donated without your help!" -Living Donor, University of Utah Medical Center, Salt Lake City, UT "You all do a great job. I cannot see anything to improve the NLDAC. Thank you so much for helping me and my family. Thanks!!!" -Living Donor, University of Maryland Medical System, Baltimore, MD "This is a wonderful program that made a huge difference in my life. It made it possible not to worry about the fact that I was not supporting the rest of my family because I was spending so much on the process. HUGE BLESSING!"-Living Donor, Abbott Northwestern Hospital, Minneapolis, MN Contact Us! If you have questions or comments about our program or need assistance completing an application, please contact the NLDAC team at Toll Free: 1-888-870-5002, Phone: 703-414-1600, Fax: 703-414-7874 or E-mail: nldac@livingdonorassistance.org. We are located in Arlington, VA and are available M-F 9:00am-5:00pm ET. NLDAC provides services via a HRSA grant awarded to the University of Arizona and the partners listed below.  Health Resources and Services Administration | American Society of Transplant Surgeons | University of Arizona Health Sciences | Arbor Research Collaborative for Health | Washington University - Missouri | Mayo Clinic - Arizona Funding for this project is supported by grant number U13HS07689 from the Healthcare System Bureau, Health Resources and Services Administration, U.S. Department of Health and Human Services.  The contents of this electronic newsletter are solely the responsibility of the authors and do not necessarily represent the official views of the funder.   Educational Videos #1 Who is Eligible for NLDAC? #2 How to Apply for NLDAC #3 After NLDAC Application is Approved NLDAC Brochure and Poster Order Form Transplant Center Application Activity Report Order Form Worksheets English NLDAC Eligibility Screening Tool Donor Application Worksheet Recipient Application Worksheet Financial Hardship Waiver Worksheet Worksheets Spanish Donor Application Worksheet Recipient Application Worksheet Financial Hardship Waiver Worksheet