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."

##########

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

Legislative proposals to help living kidney donors

 Martha Gershun brings us up to date on various proposed pieces of legislation to help organ donors and increase access to transplants.

Legislative Efforts to Support Living Kidney Donors,  by Martha Gershun, Guest Blogger

"As a member of the Expert Advisory Panel to the Kidney Transplant Collaborative, I have been honored to provide input during the development of the organization’s priority legislation, the Living Organ Volunteer Engagement (LOVE) Act.  This legislation would help build a comprehensive national living organ donor infrastructure that would support a national donor education program, create a donor navigator system, ensure appropriate donor cost reimbursement, collect essential data, and improve all aspects of living organ donation across the country, substantially reducing barriers that limit participation today.

Key provisions of the LOVE Act would:

• Provide reimbursement for all direct and indirect costs for living donation, including lost wages up to $2,500 per week.
• Provide life and disability insurance for any necessary care directly caused by donation.
• Modify NLDAC rules so neither the recipient’s income nor the donor’s income would be considered for eligibility.
• Provide for new public education program on the importance and safety of living organ donation.
• Provide for new mechanisms to collect and analyze data about living organ donation to enable evidence-based continuous process improvement.

Numerous other federal proposals are also currently vying for support to address barriers to living donation on a national level.  They include:

Living Donor Protection Act (H.R. 2923, S. 1384)

• Prohibits insurance carriers from denying, canceling, or imposing conditions on policies for life insurance, disability insurance, or long-term care insurance based on an individual’s status as a living organ donor.
• Specifies that recovery from organ donation surgery constitutes a serious health condition that entitles eligible employees to job-protected medical leave under the Family and Medical Leave Act.

Organ Donor Clarification Act (H.R. 4343)

• Clarifies that reimbursement to living organ donation is not “valuable consideration” (I.e., payment), which is prohibited under the National Organ Transplant Act (NOTA)
• Allows pilot programs to test non-cash compensation to living organ donors.
• Modifies NLDAC rules so the recipient’s income would no longer be considered for eligibility.

Living Organ Donor Tax Credit Act (H.R. 6171)

• Provides a $5,000 federal refundable tax credit to offset living donor expenses.

Honor Our Living Donor (HOLD) Act (H.R. 6020)

• Modifies NLDAC rules so the recipient’s income would no longer be considered for eligibility.
• Requires public release of annual NLDAC report.

Helping End the Renal Organ Shortage (HEROS) Act

• Provides a $50,000 refundable federal tax credit over a period of five years for non-directed living kidney donors.

############

And here's one more, from the Coalition to Modify NOTA

Coalition to Modify NOTA (the National Organ Transplant Act of 1984)

 Elaine Perlman forwards the following discussion points:

Coalition to Modify NOTA Talking Points

modifyNOTA.org

What is the Coalition to Modify NOTA proposing? The Coalition to Modify NOTA proposes providing a $50,000 refundable tax credit to remove all disincentives for American non-directed kidney donors who donate their kidney to a stranger at the top of the kidney waitlist in order to greatly increase the supply of living kidney transplants, the gold standard for patients with kidney failure.

What is the value of a new kidney? The value of a new kidney, in terms of quality of life and future earnings potential, is between $1.1 million and $1.5 million.

What is the American kidney crisis? Fourteen Americans on the waiting list for a kidney transplant die each day. That number does not include the many kidney failure patients who are not placed on the waiting list but would have benefited from a kidney transplant if we had no shortage. The total number of Americans with kidney failure will likely exceed one million by 2030. 

Why not rely on deceased donor kidneys to end the shortage? A living kidney transplant lasts on average twice as long as a deceased donor kidney. Fewer than 1 in 100 Americans die in a way that their kidneys can be procured. Currently, the 60% of Americans who are registered as deceased donors provide kidneys for 18,000 Americans annually. Even if 100% of Americans agreed to become organ donors, this would raise donations by only about 12,000 per year. In the USA, 93,000 Americans are on the kidney waitlist. A total of 25,000 people are transplanted annually, two-thirds from deceased donors and one-third from living donors. The size of the waitlist has nearly doubled in the past 20 years, while the number of living donors has not increased.

What is the extra value that non-directed kidney donors provide? Non-directed kidney donors often launch kidney chains that can result in a multitude of Americans receiving kidneys. Fewer than 5% of all living kidney donations are from non-directed kidney donors who are an excellent source of organs for transplantation because they are healthier than the general population. 

 

How much does the taxpayer currently spend on dialysis? Kidney transplantation not only saves lives; it also saves money for the taxpayer. The United States government spends nearly $50 billion dollars per year (1% of all $5 trillion collected in annual taxes) to pay for 550,000 Americans to have dialysis, a cost of approximately $100,000 per year per patient, a treatment that is far more expensive than transplantation.

 

How many more lives will be saved with the refundable tax credit for non-directed donors? The number of non-directed donors increased from 18 in 2000 to around 300 each year. After our Act becomes law, we estimate that we will add approximately 7,000 non-directed donor kidneys annually. That is around 70,000 new transplanted Americans by year ten. 

 

How much tax money will be saved once the Act is passed? The refundable tax credit will greatly increase the number of living donors who generously donate their kidneys to strangers. We estimate that in year ten after the Act is passed, the taxpayers will have saved $12 billion. 

 

What is a refundable tax credit? A refundable tax credit can be accessed by both those who do and those who do not pay federal taxes. 

 

What do Americans think about compensating living kidney donors? Most Americans favor compensation for living kidney donors  to increase donation rates. 

 

Who is able to donate their kidneys?  Donation requires potential organ donors to undergo a comprehensive physical and psychological evaluation, and each transplant center has its own rigorous criteria. Only around 5% of those who pursue evaluation actually end up donating, and only about one-third of Americans are healthy enough to be donors. Providing financial incentives will encourage more Americans to donate their kidneys to help those with kidney failure.

 Do kidney donors currently have expenses that result from their donation? The medical costs of donation are covered by the recipients' insurance, but donors are responsible for providing for the costs of their own travel, out-of-pocket expenses, and lost wages. Programs like the federal NLDAC and NKR's Donor Shield can help offset these costs, making donation less expensive.

Is it moral to compensate kidney donors? Compensation for kidney donors can be viewed as a way to address the current kidney shortage and save lives. Americans are compensated for various forms of donation such as sperm, eggs, plasma, and surrogacy, all of which involve giving life. 

How long do we need to compensate living kidney donors? Compensation should continue until a xenotransplant or advanced kidney replacement technology becomes available. In the meantime, it's crucial to prevent further loss of lives due to the shortage.

 Will incentivizing donors undermine altruism?  Financial compensation for donors can coexist with altruism. Donors can opt out of the funds from the tax credit or choose to donate those funds to charity. The majority of donors support financial compensation, and relying solely on altruism has led to preventable deaths.

 In addition to ending the kidney shortage, what are other benefits of the Act? The Act can help combat the black market for kidneys and reduce human trafficking because we will have an increased number of transplantable kidneys. It can also motivate individuals to become healthier to pass donor screening, potentially further reducing overall healthcare costs.

 Why provide non-directed donors with a refundable tax credit of $50,000? The compensation is designed to attract those who are both healthy and willing to donate. Given the commitment, time, and effort involved in the donation process, this compensation recognizes the value of those who save lives and taxpayer funds.

 When more donors step forward, can transplant centers increase the number of surgeries?  There is considerable unused capacity at most U.S. transplant centers, and increasing the number of donors is likely to lead to more surgeries. The goal is to perform more kidney transplants and reduce the waitlist, benefiting patients in need.

 In what way does the Act uphold The Declaration of Istanbul?  While the Act deviates from one principle of the Declaration of Istanbul by offering compensation, it aligns with the other principles and is expected to standardize compensation and reduce worldwide organ trafficking.

 What about dialysis as an alternative to transplant?  Dialysis, while a treatment option, can be a challenging and uncomfortable process for patients. For those who could have been transplanted if there were no kidney shortage, dialysis can result in needless suffering and an untimely death.

 Why not compensate living liver donors? Liver donation is riskier and not as cost-effective as kidney donation. While the Act currently focuses on kidney donors, it's possible that compensation for liver donors could be considered in the future.

 What about the argument that providing an incentive to donate will exploit the donors, especially low income donors? 

Primarily middle and low income kidney failure patients are dying due to the kidney shortage. People with lower incomes tend to have social networks with fewer healthy people because health is related to income level. In addition, being placed on a waitlist often costs money. Kidney donation also costs money, an estimated 10% of annual income. The refundable tax credit will help low income donors and recipients the most by making donation affordable and increasing the number of kidneys for those waiting the longest on the waitlist, frequently middle and low income Americans. The tax credit aims to help those most affected by the kidney shortage, as poorer and middle-income individuals often bear the brunt of the kidney crisis’s consequences. The Act will level the playing field, making it easier for those at all income levels to receive a life-saving kidney. 

Please examine this chart:

 

The high out-of-pocket cost of donating a kidney. By Martha Gershun

 Martha Gershun continues to write eloquently about the obstacles to kidney donation.  

Here she is in Stat:

The high out-of-pocket cost of donating a kidney. By Martha Gershun 

"Five years have now passed since I donated my kidney, and both Deb and I are doing well....

"My husband and I are comfortable financially. We could afford the $5,000 in gasoline, hotels, and food for the 19 nights we spent travelling to the Mayo Clinic for my medical evaluation, surgery, recovery, and six-month follow-up visit. Our children are grown and our parents are gone, so we had no child care or elder care expenses (though we did have to pay a cat sitter for the time we travelled). And neither of us had to forgo any wages: At 61, I had already retired from paid work, and the generous PTO policy at the nonprofit where my husband was CEO covered the 128 hours of work he missed to travel with me and help with my recovery.

 "We did not qualify for assistance from the National Living Donor Assistance Center (NLDAC), because my recipient’s income was more than 300% of the current Health and Human Services (HHS) Poverty Guidelines (this has recently been raised to 350%). In fact, my recipient generously insisted on reimbursing us for our out-of-pocket expenses. This is not considered direct compensation for an organ, so is legal under the National Organ Transplant Act (NOTA).

But all of that was just our good fortune. What about potential organ donors without our resources? It is very easy to imagine someone in a low-wage hourly job who wants to donate a kidney to their sister, a married mother of two, who, along with her spouse, has an annual household income slightly above $105,000, which is 350% of the current HHS Poverty Guidelines. That potential donor, unable to access help from NLDAC, would be unable to afford the out-of-pocket expenses or lost wages. There would be no living donation; the patient would remain on the kidney transplant waiting list, along with 93,000 others.

Every living kidney donor saves private insurance or Medicare significant expense — experts estimate between $250,000 and $500,000 over the lifetime cost of dialysis for each kidney patient they help. Every living kidney donor enables the hospital and the surgeons, nephrologists, nurses, and other staff who work there to earn money for their transplant work. But the kidney donor — the one person who gives away a part of their body to make this miracle possible — is forced to incur financial losses to participate.

Recognizing this problem, New York state recently passed the Living Donor Support Act, the first law that provides living organ donors in the United States reimbursement for donation-related expenses, including lost wages, travel, lodging, and child care.

"Congress just revised the 1984 law that set up the United Network for Organ Sharing (UNOS) as the sole contract holder to run the country’s organ transplant system. Hopefully, this will have a tremendous impact on the way the system procures, allocates, and distributes organs from deceased donors. A better functioning transplant system, with improved technology and a better process for wait list management, could help living donors, but this legislation does nothing to help living donors overcome the financial barriers to organ donation.

...

"Individuals should not have to pay out of their own pocket to save someone else’s life."

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.

Representatives Matsui and Wilson have introduced legislation that, if passed, could allow pilot programs involving compensation of organ donors.

  Congresswoman Doris Matsui (D-CA) and Congressman Joe Wilson (R-SC)  have introduced legislation that, if passed, could allow pilot programs involving compensation of organ donors.

Here's the press release:

WASHINGTON, D.C. – Today, Congresswoman Doris Matsui (D-CA) and Congressman Joe Wilson (R-SC) introduced the Organ Donation Clarification Act, a bipartisan bill to reduce barriers to organ donation and increase the supply of organs for transplantation.

Every day, 17 Americans die waiting for a lifesaving organ transplant. As of this month, over 114,000 Americans are on the national waitlist. In 2022, although over 42,000 patients received a transplant, over 68,000 additional patients were added to the national waitlist.

With over 95,000 patients in need of a kidney transplant, the average wait time is between three to five years. Those delays cause tens of thousands of Americans to go through lifesaving yet burdensome and disruptive dialysis treatments in the hope that they live long enough for a kidney to become available.  However, thousands of Americans every year will become too sick to receive a transplant and die waiting for one. Not only can thousands of lives be saved, but getting everyone the lifesaving transplant they need can also save billions of dollars a year in dialysis costs.

“Every day that our country suffers from an organ donation shortage means more preventable loss of life,” said Congresswoman Matsui. “By removing disincentives and barriers for prospective donors, we can reach more patients and save lives. The Organ Donation Clarification Act is a bipartisan solution that will help us bridge the gap in organ donations and give hope to patients and families waiting for a lifesaving transplant.”

“I am grateful to introduce this bipartisan bill with Congresswoman Matsui to address the severe organ donation shortage in our country,” said Congressman Wilson. “An average of 17 people in the U.S. succumb to their illnesses every day because they could not survive the wait for a viable organ. In certain parts of the country, the waitlist can be over five years for a kidney. Current law lacks clarity and prevents potential organ donations. This legislation addresses those issues by removing the hurdles for potential donors and allowing new, innovative ways to increase organ donation. This would not only save taxpayer dollars but, most importantly, it would save lives.”

“We appreciate Congresswoman Matsui’s leadership on this bill, which improves the chances that a living donor can make the choice to save a life,” said Dr. David Lubarsky, CEO of UC Davis Health. “UC Davis Health is enormously proud of our Transplant Center, which is one of the largest in the country and has saved more than 5,000 lives in its 38 years of operation.”  

Organ transplantation is governed by the National Organ Transplant Act (NOTA) of 1984. This law prohibits buying or selling organs for “valuable consideration.” Confusion about what constitutes valuable consideration has hampered donation by scaring people away from reimbursing living organ donors for things like medical expenses and lost wages. Both are legal under NOTA, but the law's lack of clarity and its criminal penalties have created uncertainty and prevented reimbursements in many cases.

Moreover, current law does not allow for any entity to test the efficacy of providing benefits to encourage donation. The bill would allow for government run pilot programs to test the provision of non-cash benefits in order to increase organ donation, subject to ethical review, and mandates a report so the broader transplant community can understand best practices for encouraging additional organ donation. These benefits could include funeral benefits for deceased donors and health insurance, tuition assistance, or other proposals to increase the number of living donors. A 2019 American Economic Review survey indicates that between 65 and 80 percent of Americans would support such a program to encourage additional donation.

Finally, when determining eligibility for reimbursements for donation expenses such as travel and medical costs, current law requires the government to take into account the income of the recipient, rather than solely focusing on the income of the donor. This often disqualifies potential donors by creating additional financial burden.  

The Organ Donation Clarification Act would:

• Clarify that certain reimbursements are not valuable consideration but are reimbursements for expenses a donor incurs;
• Allow government-run pilot programs to test the effect of providing non-cash benefits to promote organ donation;
• Clarify that the National Living Donor Assistance Center (NLDAC) can’t consider the organ recipient’s income when determining whether to reimburse a donor’s expenses.

This bipartisan legislation is endorsed by the Americans for Tax Reform, American Transplant Foundation, Foundation for Kidney Transplant Research, National Kidney Donation Organization, Transplant First Academy, Chris Klug Foundation, Flood Sisters Kidney Foundation, American Liver Foundation, National Kidney Donation Organization, Kidney Transplant Collaborative and Wait List Zero.

Text of the legislation can be viewed here.

**********

HT: Frank McCormick

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 "

***********

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."

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."

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

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?

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