An Organ Donation Clarification Act is introduced again

 Here's a new bill introduced into Congress by Matt Cartwright:

To amend the National Organ Transplant Act to clarify the definition of valuable consideration, to clarify that pilot programs that honor and promote organ donation do not violate that Act, and for other purposes. 

The background material it refers to (cost savings, Israeli law, etc.) will be familiar to readers of this blog. (See my past posts about Congressman Cartwright's previous efforts.)  

Here's a press release from co-sponsor Joe Wilson:

CONGRESSMEN WILSON, CARTWRIGHT INTRODUCE BIPARTISAN LEGISLATION TO BOOST ORGAN DONATION  Jun 8, 2021 Press Release

"On May 28, Congressmen Joe Wilson (R-SC-02) and Matt Cartwright (D-PA-08) re-introduced the Organ Donation Clarification Act, a bill with Democratic and Republican support to reduce barriers to organ donation and allow for a pilot program to test the effectiveness of non-cash incentives to increase the supply of organs for transplantation.

...

"The Organ Donation Clarification Act would:

Clarify that certain reimbursements are not valuable consideration but are reimbursements for expenses a donor incurs; and

Allow government-run pilot programs to test the effect of providing non-cash benefits to promote organ donation.

This bipartisan legislation is endorsed by the American Medical Association, Americans for Tax Reform, American Transplant Foundation, Foundation for Kidney Transplant Research, National Kidney Donation Organization and Wait List Zero.

Additional co-sponsors in the U.S. House are Reps. Steve Cohen (D-TN-09), Brian Fitzpatrick (R-PA-01), Mike Kelly (R-PA-16), David McKinley (R-WV-01), Del. Michael San Nicolas (D-Guam-At Large), Jan Schakowsky (D-IL-09), Adam Schiff (D-CA-28), Jackie Speier (D-CA-14), William Timmons (R-SC-04) and Don Young (R-AK-At Large)"

Compensate living donors for lost wages and other expenses?

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

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

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

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

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

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

**********

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

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

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

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

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

Incentives can save lives (Washington Post op-ed with Congressman Cartwright)

The Washington Post published this week an opinion piece I coauthored with Congressman Matt Cartwright of Pennsylvania, in support of the new legislation he has proposed, H.R.6448 - Organ Donation Clarification Act of 2018.

Our piece ran under the headline
Student loan forgiveness and other incentives could save lives. Here’s how.
By Matt Cartwright and Al Roth
October 25
Matt Cartwright, a Democrat, represents Pennsylvania’s 17th District in the House. Al Roth, a professor at Stanford University, won the 2012 Nobel Prize in economics.

Here's the text as in ran in the paper:

"Every day 20 Americans will die waiting for an organ transplant, 13 of them waiting for a kidney. Hundreds of thousands will undergo painful and debilitating dialysis treatments to extend their lives in the hope that a kidney will eventually become available.

We are quickly marching in the wrong direction. As of mid-October,95,000 people remain on the kidney waiting list. Each year, approximately 17,000 patients are lucky enough to receive a transplant; however, 35,000 new patients are added annually to the national waitlist.

The average wait time for a new kidney is approaching five years , unless you have a family member or friend who can serve as your donor. During this time, your activity will be limited due to your fragile condition, and your schedule will be dictated by four-hour dialysis sessions several times a week. Because of this, 77 percent of dialysis patients are unemployed and reliant on social services.

The pain, suffering and death are overwhelming. And so is the cost: roughly 7 percent of the Medicare budget. Dialysis, on its own, costs Medicare more than $87,000 per patient per year. A kidney transplant, on the other hand, pays for itself in less than two years and saves an average of more than $745,000 in medical costs over a 10-year period, with 75 percent of those savings going to the taxpayers. If the supply of transplant kidneys could be increased to meet the demand, taxpayers would save more than $12 billion per year in medical costs.

Solving the organ and kidney waiting list issue is a true win-win: changing the lives of those suffering from kidney failure while relieving a significant burden on the American taxpayer.

Innovations in science and health-care management have undoubtedly increased donations. Last decade, groundbreaking registries and matching programs were created to allow incompatible patient-donor pairs to join a pool of other patients and donors so that each patient received a compatible kidney. The kidney-exchange model has saved thousands of lives and helped earn one of the co-authors of this article a Nobel Prize in economics.

The kidney wait list is now one and a half times the size it was in 2004, when the New England Program for Kidney Exchange began. This is partly because medical progress extending the lives of those on dialysis has failed to address the fundamental issue of organ failure. Meanwhile, innovation in our approach to transplantation has not kept pace with dramatic increases in the demand for kidneys. We are clearly in need of a new approach. Effective legislation can help solve the problem.

The Organ Donation Clarification Act, introduced by the other co-author of this article, proposes a new and innovative path toward increasing both deceased and living organ donation. The bill clarifies the definition of a “valuable consideration” — cash payments for donation, which are currently prohibited for organ donors — to eliminate misunderstandings and delays in reimbursement for valid donation-related expenses, which have hampered living organ donation. This bill also allows government-run, ethics-board-approved pilot programs to test the effectiveness of providing noncash incentives to promote organ donation.

What might such pilot programs look like? Perhaps a living donor might receive health insurance, forgiveness of student loans, a donation to a charity of choice, a contribution to retirement savings. The family of a deceased donor might get funeral benefits.

We do not know exactly what the effects of incentives would be on organ donation, which is exactly why these pilot programs are necessary. Would they help? What incentives would be most effective? What are the unforeseen circumstances? Let’s allow the scientific community to experiment, test creative solutions and see what might solve this crisis.

Public opinion firmly supports compensating organ donors. The pilot programs under the bill would ensure the noncash incentives would not come from the organ recipient and that organs would be distributed fairly, in the same manner they are now. With those parameters, more than 80 percent of people in a recent national academic study of nearly 3,000 voiced their support for a successful program of compensating organ donors.

There are many factors to consider when tackling the issue of organ donation. We must preserve dignity, avoid exploitation and be careful about incentives. We must ensure that the poor and desperate are not treated unfairly.

We can do this right, and these pilot programs will help us get answers to fix the organ shortage that costs us 20 American lives every day. We can save lives, end suffering and save billions in the process. The time to act is now."
**************

The bill is is designed to make healthcare more accessable. And it is pro-science as a way for finding out how to do this.  It is likely that it will meet with some opposition ... but it's good to know that we have representatives like Mr. Cartwright who keep trying.

Two bills aimed at increasing the number of transplants

The Niskanen Center has a post on two proposed pieces of legislation (together with some thoughts on why incremental policy oriented work is important):

TWO NEW BILLS WILL HELP WITH THE KIDNEY SHORTAGE. BUT PAYING DONORS COULD HELP EVEN MORE.
BY SAMUEL HAMMOND

Here's the  first paragraph of their article, and the  last.


"Last week, the Organ Donation Clarification Act was released by Rep. Matt Cartwright (D-PA) with 14 cosponsors. The bill would clarify the National Organ Transplant Act’s (NOTA) definition of “valuable consideration,” making it clear that donors can be compensated for medical expenses and lost wages. It would also permit the U.S. government to run pilot programs to test the viability of noncash rewards to incentivize donors. And now this week, Rep. Tom Rice (R-SC) has announced a set of amendments to NOTA that seek to orient the Health Resources and Services Administration toward increasing organ procurement, rather than simply distributing an inadequate supply."

...
"At the same time, the Niskanen Center’s overall mission eschews ideal theories in favor of pragmatic policy change. Thus, as much as I’d love to see someone like Al Roth appointed as the organ transplant czar, with a mandate to design an optimal market in organs, politics is a long game of persuasion and compromise. That’s why the two new bills from Reps. Cartwright and Rice remain immensely important, even if they don’t nearly go far enough."

Proposed new legislation: Organ Donor Clarification Act

Here's an Act that would encourage evidence-based policy towards reducing the dis-incentives to donate a kidney or part of a liver for transplantation.  (Evidence is not so popular these days, and compensation for donors is a red flag, so I expect it may yet meet with opposition, as did a differently composed previous attempt in 2016 .  So far I can't find the current version online--it looks like it will eventually be here-- but the offline version I've seen looks like something I will support:)

CARTWRIGHT ANNOUNCES LEGISLATION TO INCREASE ORGAN DONATION

Jul 19, 2018 

Press Release

Effort Comes Amidst Shortage, Resulting in Thousands of Preventable Deaths Every Year

Washington, DC – Addressing our nation’s dire organ transplant shortage U.S. Representative Matt Cartwright (D-PA) introduced the Organ Donor Clarification Act on July 19th.There are 115,000 people on the organ transplant waiting list and 20 people die every day as they wait for an organ. This bipartisan legislation will remove existing hurdles for donation and test out new ways to increase donations.

“This is life and death; 20 people die every day because they could not survive the wait for a viable organ,” Rep. Cartwright said.  “Kidney waiting lists in major cities can last from five to ten years, which is often longer than a patient can survive on dialysis.”

The number of people in the United States with kidney failure has increased by nearly 20% since 2000 and there are currently over 95,000 Americans on the national waitlist for a kidney. Each year 17,000 patients receive a kidney transplant, while about 35,000 new patients are added to the kidney waiting list. As many as 80,000 additional patients may be good candidates for kidney transplant, but have never even been listed. 

This legislation removes existing barriers that donors face under current law and allows for a pilot program to test the effectiveness of non-cash incentives to increase the supply of organs for transplantation.

Currently, 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 hampers donation by scaring people away from reimbursing organ donors for things like medical expenses and lost wages,” said Rep. Cartwright.  “Reimbursements are legal under NOTA, but the law’s lack of clarity and criminal penalties have created uncertainty that has prevented or delayed reimbursements in many cases. Additionally, this bill will allow experts and scientists to run pilot programs – subject to ethical review and government oversight – to test the effect of non-cash incentives in reducing the organ transplant waiting list.”

The expanding kidney wait list has also become a burden on our nation’s finances, as costs for dialysis and other intermediary treatments become more expensive each year. The taxpayer ends up footing the bill through Medicare and other social service programs. Experts project that eliminating the waiting list would save taxpayers well in excess of $5.5 billion per year in medical costs and billions of dollars more in savings to other social programs.

The Organ Donor Clarification Act would:

• Clarify that certain types of payments are not valuable consideration but are reimbursements for expenses a donor incurs.
• Allow government-run pilot programs to test the effectiveness of providing non-cash incentives to promote organ donation.  These pilot programs would have to pass ethical board scrutiny, be approved by HHS, distribute organs through the current merit based system, and last no longer than five years.

The Organ Donor Clarification Act has been endorsed by the following organizations:

• American Medical Association
• American Liver Foundation
• Americans for Tax Reform
• American Foundation for Donation and Transplantation
• American Transplant Foundation
• Chris Klug Foundation
• Donor to Donor
• Flood Sisters Kidney Foundation
• Foundation for Kidney Transplant Research
• Transplant First Academy
• WaitList Zero

The Bill is cosponsored by the following bipartisan members of the House of Representatives:

Rep. Jason Lewis (R-MN), Rep. Sanford Bishop (D-GA), Rep. André Carson (D-IN), Rep. Steve Cohen (D-TN), Rep. Brian Fitzpatrick (R-PA), Rep. Raul Grijalva (D-AZ),  Rep. Lynn Jenkins (R-KS), Rep. E.B. Johnson (D-TX), Rep. Mike Kelly (R-PA), Rep. Ro Khanna (D-CA), Rep. Tom Marino (R-PA), Rep. Jim McGovern (D-MA), Rep. Jared Polis (D-CO), Rep. Bill Posey (R-FL), Rep. Don Young (R-AK)

More on compensation for donors

It's hard for anyone to say anything new in the long (and long-running) debate about whether we should try to increase the supply of kidneys by crafting some form of ethical, non-coercive compensation for donors, or whether this should remain illegal.
Frank McCormick points me to this recent article, which ends with what I hope is a fairly noncontroversial link to the deceased donor registries:

It May Sound Awful, but We Really Do Need to Pay for Human Organs
by Mark Joffe

It concludes:
"While there is little support for an Iranian-style organ market in the United States, there is an increasing realization that finding more live donors will involve offering them incentives to give up a kidney. A reform that compensates donors without allowing recipients to pay for organs is a viable middle ground. The government could fund such a program with cost savings on dialysis. One estimate puts the potential savings at as much as $12 billion a year.

Last year, Rep. Matt Cartwright (D-Penn.) introduced the Organ Donation Clarification Act, which would have allowed state and local governments to implement pilot programs offering non-cash benefits to live organ donors. These in-kind benefits might include a tuition voucher, loan forgiveness or a contribution to the organ donor’s designated charity. In addition, Cartwright’s legislation would have clarified language in NOTA to establish that cash reimbursement for donor travel expenses, medical costs and lost wages is permissible. The bill attracted 11 bipartisan cosponsors but did not move out of committee.

Cartwright’s office told me that he plans to reintroduce the legislation in the current Congress. Once he does, he will have the support of a group of D.C. policy wonks who have created the Organ Reform Group and Network. One of the group’s members, economist Kurt Schuler, donated a kidney to a stranger in 2014 under the current system, but believes that incentives are needed to end the nation’s kidney shortage.

Whether or not you agree that live donors should be compensated for their kidneys, I hope we can all agree that donating our organs at death is no sacrifice. While this issue is on your mind, consider signing up for the organ registry at https://organdonor.gov/register.html."

Obstacles to Organ Donations: The Dire State of Kidney Transplantation--Cato Institute

Here's a panel discussion at the Cato Institute (pointed out to me in a comment on a previous post by Haksing Zimik):
Obstacles to Organ Donations: The Dire State of Kidney Transplantation

Featuring Ike Brannon, Visiting Fellow, Cato Institute; Jeremy Marcus, Legislative Director and Deputy Chief of Staff, Rep. Matt Cartwright; Sally Satel, M.D., Senior Fellow, American Enterprise Institute; Keith Melancon, M.D., Director, George Washington Transplant Institute; Kurt Schuler, Kidney Donor; moderated by Peter Russo, Director of Congressional Affairs, Cato Institute.

The video is 38 minutes of interesting, moderate discussion, and ends rather abruptly--I gather the discussion continued beyond the video.

Proposed legislation offers incentives to living organ donors

The Pittsburgh Tribune Review has the story
Proposed legislation offers incentives to living organ donors in Pa.

"A Pennsylvania lawmaker plans to introduce legislation this week that would allow pilot programs to give non-cash rewards to people who donate a kidney or part of their liver.

The proposal from U.S. Rep. Matt Cartwright, D-Moosic, includes potential rewards for donors such as health insurance, tax credits, contributions to the donor's favorite charity and tuition reimbursement.

Federal law prohibits buying or selling organs for transplantation, but Cartwright said his proposal aims to address a dire organ shortage while saving the government money.

He estimates that eliminating the nation's bloated organ wait list could save more than $5.5 billion per year in medical costs for people with end-stage renal disease.

Cartwright said it's “a national outrage that 22 people die every day waiting for a transplant.”

“The current system is not working, and the only way to find out what would make it work is to try something new,” Cartwright told the Tribune-Review. “I have support on both sides of the aisle because people understand we need to try something different.”

The congressman emphasized that his plan would not pay donors for their organs but simply provide an incentive to donate. To avoid corruption, an ethics control board would monitor the program, and the rewards would not be transferable to other people, he said.

The legislation also would call for donors to be reimbursed for time off work and travel and costs associated with the surgery, which can be prohibitive."