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?

Four recent calls for removing disincentives for organ donation

There are a number of efforts underway to reduce the financial dis-incentives to kidney donation, with more or less emphasis on opposition to, and how removing dis-incentives is different from, compensating donors.

The first I'll mention is a March 13 blog post from Kenneth A. Newell, the president of the American Society for Transplantation:  Why all the talk about incentives?
Here's his whole post:

Last summer, the ASTS and the AST held a workshop to discuss the financial barriers faced by living organ donors. All of us who are engaged in the practice of living donor transplantation realize that the entire healthcare delivery system (providers, hospitals, insurers, and the government), as well as the recipient and society as a whole, benefits financially from the practice of living donation. Disturbingly, the donors are the group most at risk for adverse financial events. In many cases, donors incur expenses related to travel, meals, and lodging, as well as lost wages. In addition to these concrete financial consequences, living donors also face very real concerns about the loss of employment and the impact their donation will have on future insurability. Programs such as the HRSA-funded National Living Donor Assistance Center (NLDAC) provide critical support to those donors with the most extreme financial need, but this support is limited to travel and travel-related expenses.

The aim of the first meeting was to explore whether the AST and the ASTS could articulate a common vision on the topic of financial disincentives and incentives as they pertain to organ donation. The two societies agreed to work to remove all financial disincentives to organ donation, and consider pilot projects to study what some might consider to be true incentives. These ideas are more fully articulated in a New York Times editorial authored by Daniel Salomon and Alan Langnas, as well as in a manuscript soon to be published in the American Journal of Transplantation.

As a second step, representatives of the two societies met last month in Minneapolis to discuss how the goals articulated at the first meeting could be operationalized. Presentation topics included the perspective of payers, overviews of NOTA and NLDAC, and consideration of how changes to NOTA could be effected. Attendees discussed where the societies might draw the line between the removal of disincentives and the provision of true incentives for living organ donation, and how an expanded program to remove all disincentives for all living donors might be administered (assuming that funding could be obtained). This second meeting focused almost entirely on the removal of financial disincentives with the goal of making the donor financially whole. This position was recently advanced by the AST Best Practices in Living Donation Consensus Conference. At this second meeting, there was little discussion about incentives or pilot projects to test the impact of true incentives, as these are more controversial and will require substantially more effort and time to engage a broader set of transplant stakeholders. In other words, both the AST and the ASTS agreed that the task of operationalizing the original workshop’s ideas must be strictly pragmatic and start with those changes that are largely agreed upon now: removing all disincentives.

So why all of the talk about incentives (and disincentives)? Because any changes to the current financial practices of organ donation will require the AST and the ASTS to engage in ongoing discussions with a larger set of stakeholders: patient groups, transplant professionals, government leaders, and society as a whole. Any changes must have the support of these groups as well as our membership, and any changes must meet the real needs of patients, donors and their families.

Over the next several months, the AST will reach out to our membership and these other groups to discuss the removal of financial disincentives, the definition of true incentives, and the challenge of possibly testing incentives in pilot projects. The conversation starts here: please share your opinions in the comment section.

Next, the open letter linked and excerpted below, is from the Declaration of Istanbul Custodian Group and signed by many prominent opponents of compensation to donors: the first signer is Frank Delmonico.
An Open Letter to HHS Secretary Burwell on Ethically Increasing Organ Donation

"In 1984, Congress passed the National Organ Transplant Act (NOTA). That statute not only established the Organ Procurement and Transplantation Network but also enshrined in law a principle that had guided the development of organ transplantation worldwide over the previous 30 years: organs from living and deceased donors are precious gifts, and should not be bought and sold as market commodities.

Remove the Obstacles to Donation

The growing demand for transplants currently exceeds the supply of donated organs. In the previous decade, a collaborative effort among the Department of Health and Human Services, organ procurement organizations, physicians, and community groups produced a 25% increase in the number of deceased donor organs. Yet, over the course of the past ten years in the United States, the number of kidney transplants (which account for more than two thirds of all transplants) made possible by living donors has declined by approximately by a thousand.One major reason for this decline is that living donors in the United States incur on average more than U.S. $6000 in out-of-pocket costs. Potential donors may not be able to afford these expenses and may either be unaware of, or not meet the strict requirements for, programs that cover some but not all of donors' financial costs and losses.If the United States wants to increase organ donation, we should begin by removing these financial disincentives. We are aware that some people have recently called on the President and Congress to repeal, or at least suspend, NOTA's prohibition on paying organ donors. However, when it looked at “Ways to Reduce the Kidney Shortage” (September 2, 2014), the New York Times rightly concluded that “there are lots of reforms that could be made without resorting to paying for kidneys.”

The post goes, on, you should read the whole thing, but here are the two concluding section heads:
Appoint a New Task Force on Organ Donation and Transplantation
and
Financial Incentives for Donation Would Violate Global Standards and Will Not Work
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Below is a statement from an organization whose very name reflects the complicated politics: it is called STOP ORGAN TRAFFICKING NOW!, and it describes its goal as "Working to Remove Barriers to Living Donations". That is, it is an organization seeking to remove disincentives to donation, that wants to distinguish itself from black markets, and perhaps from those proposing compensation. (Forming coalitions is hard, and politics is incremental...)

The SOTN Proposal In Simplest Terms
"• Increase penalties for organ brokering at home and abroad.
• Follow original intent of NOTA and have Medicare help patients in greatest medical need first and according to UNOS current wait list criteria by:
(a) paying expenses of donors willing to give to top match in their region, and
(b) paying the Organ Procurement Organizations (OPOs), which currently match deceased donor organs with recipients, to arrange living matches as well.
• Allow 501(c)(3) public charities (and recipients themselves) to cover all donation related expenses – The same expenses that currently can be deducted from state income taxes at the state level. Charities can help any donor, not just those giving to front of the list.
• Create living donor registry that puts donor AND one relative to the front of the list at any time donor chooses."
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Finally, I'm keeping an eye on a newly formed organization called Waitlist Zero, in part because its co-founder and executive director is Josh Morrison, a young lawyer and kidney donor (who thinks of kidney donation as an example of effective altruism), with whom I had the privilege to work when he was the general counsel at the Alliance for Paired Donation (Mike Rees' kidney exchange organization).

Here is their statement of goals, principles and policies:

Our Goals. We come together as a coalition to advocate that the Health Resources and Services Administration:

1. Publicly support the goal of increasing living kidney donation;
2. Allow grant funding, including that pursuant to 42 U.S. Code §274f–1(b), to go to projects intended to increase living kidney donation;
3. Allocate such funds in rough parity between living and deceased donation projects; and
4. Include metrics and goals related to the increase of living donation on HRSA’s FY 2016 Annual Performance Report.

Our Principles. Collectively, the Coalition believes:

• Deceased donation alone can never end the deadly kidney shortage, and any policy that takes that shortage as given is morally unacceptable.
• Living donation is a noble choice that is not right for everyone, but donors themselves can benefit from the better health of their loved ones and the psychic gains to donation. Since studies show the vast majority of living donors do not regret donating, federal policy should presume donation to be a positive choice worth promoting.
• Informed consent must be maintained for every kidney transplant. Any effort to coerce or pressure someone into donating is unacceptable.
• Improvements are always possible, but the current transplant system does an excellent job of ensuring informed consent for the thousands of living donors who give each year.
• Government programs to increase living donation should not and will not impinge on the ability of transplant centers to ensure informed consent and guarantee the absence of coercion.

Our Policies. Collectively, the Coalition hopes that HRSA’s support for increasing living kidney donation will lead to policies along the lines of the following:

• Donors should not be worse off for having donated. Government should: (1) guarantee the reimbursement of donor lost wages, (2) provide health insurance coverage to alleviate risks of donation, and (3) devote appropriate resources to ensure long-term donor follow-up.
• Transplant awareness and education should be increased for the public, patients, and patient families. All patients and patient families should receive comprehensive transplant education before they go on dialysis (when possible) and immediately thereafter (when necessary). Access to paired kidney donation should be universal.
• Members of the Coalition may have different views as to the advisability of incentives for living donation, but the Coalition believes there are many ways the federal government can increase living donation that do not raise the controversy of incentives, and this campaign is not intended to promote the adoption of incentives.

HT: Frank McCormick, et al.

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

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 Organ Donor Assistance Center (NLDAC)

I've recently joined the advisory board of the National Living Organ Donor Assistance Center (NLDAC), which gives certain forms of financial assistance--mostly travel assistance--to living organ donors.  I expect to learn more about what they do, and can do, in the months to come.

Here's a page outlining how to apply for travel assistance.

And here's a paper describing its history and experience:
Development of the National Living Donor Assistance Center: reducing financial disincentives to living organ donation, by
Patricia H. Warren, RN, CPTC, Kimberly A. Gifford, MBA, Barry A. Hong, PhD, Robert M. Merion, MD, and Akinlolu O. Ojo, MD, PhD, MBA

Abstract: Over the years, the transplant community has worked to advance the care of living organ donors; however, barriers remain, including the nonmedical expenses incurred by living donors. A new center, funded by a grant from the Health Resources and Services Administration (HRSA), was established to operate a nationwide system to remove these financial disincentives. The HRSA grant was awarded to an academic institution and the daily operations are managed by a transplant professional society. Expenses are reimbursed prospectively for financially needy living donors. Combining the legislative authority and economic resources of the federal government, the research experience of an academic institution, and the management know-how of a professional society has proven to be successful. To date, the center has received 3918 applications submitted by 199 different transplant centers and receives about 80 applications per month. On average, a donor spends $2767 for their travel expenses to the transplant center. Of the 3918 applications that have been submitted, 1941 of those applicants (50%) have completed their donor surgery.

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.

Many groups are starting to advocate experiments on compensating organ donors

There's a lot of discussion these days about clinical trials of incentives for organ donation as a way of increasing supply.

Here's a blog post from the AST, the American Society of Transplantation, on removing financial disincentives:  The Cost of Giving

" it is increasingly obvious that we impose on donors’ financial risk, a concept that threatens our perceptions of donation as an altruistic act. Gill et al (JASN, 2014 Jul 17, epub) documented, in the recent economic downturn, greatest decline in living donation among those most challenged socioeconomically, indicating the role of financial risk in discouraging “altruistic” donors.
All this is occurring against a backdrop of intense controversy regarding “incentives” for donation that has raged for years, incorporating both national and global perspectives on ethics, economics, black markets, free markets, and so on. Amidst so much controversy, though, some light is beginning to emerge. Strong ethical and economic arguments can be advanced for and against incentives. The Declaration of Istanbul outlines important precepts that address unethical practices, including underground markets, on a global basis. However, in the United States, with a well-developed organ recovery infrastructure and rule of law, examples from the underground market (as were the basis of a recent New York Times expose) may be less relevant. There is emerging support in the US for a regulated infrastructure that could address the financial implications of organ donation. The National Living Donor Assistance Center (NLDAC) already offers limited assistance for those means-tested as unable themselves to underwrite the cost of donation. Extending assistance to eliminate all financial costs regardless of means, including access to healthcare, is now considered a mainstream view (far from the reception for a similar proposal from a small working group eight years ago: Gaston et al, AJT 6: 2548, 2006).
...
"Participants in two recent meetings (both held in Chicago in June and sponsored in part by AST) will soon be publishing white papers that seek to clarify the discussion regarding compensation of living donors in the US. It is obvious that a great deal can be done within NOTA to remove disincentives (as both white papers are likely to endorse). In medicine, it is usually desirable to address controversy with evidence, as might be obtained via limited demonstration projects of targeted incentives. Though these would likely require amendment of NOTA, such has already occurred twice with the Charlie Norwood and HOPE acts, both crafted in response to a changing environment and both endorsed by AST. Our task, if we are to do everything possible for our wait-listed patients and protecting all the interests of potential donors, is to make sure we get the nuances right."


And here is an open letter, signed by a variety of interested parties
HOW TO END THE WAIT FOR ORGAN TRANSPLANTS

"We support current efforts to prevent diabetes and hypertension and to make the donation process fairer and more efficient, but they will not resolve the shortage. Additional approaches must be tried. Sadly, transplant policy has been governed by an unsubstantiated assumption: that donors cannot receive benefits for donating without being exploited or coerced. It is critical to examine that assumption. We hereby call for the swift initiation of evidence-based research on ways to offer benefits to organ donors in order to expand the availability of transplants."

Global kidney exchange and repugnance in the AJT: comments and replies

The forthcoming issue of the American Journal of Transplantation is going to have a number of conflicting views about Global Kidney Exchange (GKE).  Just as yesterday's post showed how Kidney Exchange faced some repugnance at the turn of this century, these interactions show that GKE will have to overcome some repugnance too. (I just returned from Geneva where I talked about GKE among other things, in an attempt to start bridging this divide.)


It all started with our article proposing GKE and reporting the case of a Philippine patient-donor pair, which came out in March, along with an accompanying editorial suggesting that maybe the whole idea is repugnant.

Here's the original article:

Kidney Exchange to Overcome Financial Barriers to Kidney Transplantation
by M. A. Rees, T. B. Dunn, C. S. Kuhr, C. L. Marsh, J. Rogers, S. E. Rees, A. Cicero, L. J. Reece, A. E. Roth, O. Ekwenna, D. E. Fumo, K. D. Krawiec, J. E. Kopke, S. Jain, M. Tan, S. R. Paloyo
American Journal of Transplantation, Volume 17, Issue 3 March 2017, Pages 782–790

And here's the accompanying editorial:
Walking a Tightrope or Blazing a Trail?
by A. C. Wiseman, J. S. Gill

Here is our forthcoming reply to the editorial

Global kidney exchange: Financially incompatible pairs are not transplantable compatible pairs

M. A. Rees, S. R. Paloyo, A. E. Roth, K. D. Krawiec, O. Ekwenna, C. L. Marsh, A. J. Wenig and T. B. Dunn

Version of Record online: 1 SEP 2017 | DOI: 10.1111/

And here is a letter saying that GKE is essentially organ trafficking…

Opposition to Irresponsible Global Kidney Exchange

Francis L. Delmonico and Nancy L. Ascher

Accepted manuscript online: 21 AUG 2017 09:05AM EST | DOI: 10.1111/ajt.14473

·        Abstract  Article  PDF(63K)

And our replies:

You have free access to this content

People should not be banned from transplantation only because of their country of origin

Alvin E. Roth, Kimberly D. Krawiec, Siegfredo Paloyo, Obi Ekwenna, Christopher L. Marsh, Alexandra J. Wenig, Ty B. Dunn and Michael A. Rees

Accepted manuscript online: 1 SEP 2017 09:25AM EST | DOI: 10.1111/ajt.14485

• Abstract
• Article
• PDF(65K)

1. 
   
2. You have free access to this content

   Open dialogue between professionals with different opinions builds the best policy
   

   Ignazio R. Marino, Alvin E. Roth, Michael A. Rees and Cataldo Doria

   Version of Record online: 11 SEP 2017 | DOI: 10.1111/ajt.14484

   • Abstract
   • Article
   • PDF(119K
    have free access to this content
3. Here's the text of the Roth et al. letter:

"Previously [1,2], we described how a Filipino husband-and-wife patient–donor pair were included in an American kidney exchange.1,2 Delmonico and Ascher object in the strongest terms.3 They write that ethical Global Kidney Exchange (GKE) with patient–donor pairs from the developing world “is not feasible when the culture is so experienced with organ sales.”

Among the proposers of GKE are experienced surgeons and clinicians, a senior lawyer, and a veteran market designer. We take black markets with the utmost seriousness. That’s why the first GKE pair was started with a husband and wife. We think the right course of action is to proceed carefully, slowly at first, and with constant monitoring. The second GKE pair from Mexico were cousins cared for by Dr. Ricardo Correa-Rotter, a world-renowned nephrologist and signatory of the Declaration of Istanbul.4,5

We also take seriously long-term postoperative care for both patients and donors. That’s why we propose GKE in partnership with developing countries that already have some first-rate hospitals that perform living donor transplantation. Rees et al. describe how we coordinated care with the Philippine General Hospital and St. Luke’s Medical Center in Manila.2 We also provided an escrow fund for long-term continuing care. Ivan Carrillo describes our care of the donor and recipient in the second GKE and it is clearly celebrated by Mexican media as a beautiful way to help citizens of both Mexico and the United States.4,5

Kidney exchange (KE) itself is a relatively new “matching market,” of a kind that does not involve any payments to donors. It has been successfully launched in many countries, and proposals for international cooperation are underway.6 What makes KE special is that two or more patient–donor pairs help each other. What makes GKE special is that helping first-world patients get transplants saves money, because dialysis is so expensive, and these savings can benefit poor patients and donors in poor countries who would otherwise be unable to help themselves, but can participate in GKE for free.

Delmonico and Ascher propose that poor people with ESRD in poor countries, and the donors who love them, must all be regarded as potential criminals who would inevitably corrupt first-world medicine by being included in it. In the current political climate this is a bit like proposing a blanket ban on granting asylum to refugees from some countries. We do not adopt this point of view. On the contrary, GKE is a proposal that says there are many deserving patients who need our help, who we can help, and who can help us—if we invite them carefully and take care of them attentively.

Fear is not the path forward. Bold, careful innovation has led transplantation to where it is today, and remains our best collective future.

Disclosure The authors of this manuscript have no conflicts of interest to disclose as described by the American Journal of Transplantation.

References
1. Rees MA, Paloyo S, Roth AE, et al. Global Kidney Exchange: Financially Incompatible Pairs Are Not Transplantable Compatible Pairs. Am J Transplant. 2017;17:782-90.
2. Rees MA, Dunn TB, Kuhr CS, et al. Kidney Exchange to Overcome Financial Barriers to Kidney Transplantation. Am J Transplant 2017;17:782-90.
3. Delmonico FL, Ascher NL. Opposition to Irresponsible Global Kidney Exchange. Am J Transplant 2017;17:IN PRESS THIS ISSUE.
4. A bridge of life: Global kidney exchange between Mexico and the U.S. (Accessed 8/23/2017, at http://marketdesigner.blogspot.com/2017/04/a-bridge-of-life-global-kidney-exchange.html.)
5. Carrillo I. Un puente de vida (English Translation: A bridge of life). Newsweek en Español 2017 April 14, 2017:16-25.
6. Biró P, Burnapp L, Haase B, et al. Kidney Exchange Practices in Europe, First Handbook of the COST Action CA15210: European Network for Collaboration on Kidney Exchange Programmes (ENCKEP)2017.
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Today I'm in D.C. at a meeting of NLDAC, the National Living Donor Assistance Center.

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:

 

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 

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.

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HT: Frank McCormick