More on compensation for marrow donors

Representatives of the major world marrow donation clearinghouses come out against compensation for donors:

Remuneration of hematopoietic stem cell donors: principles and perspective of the World Marrow Donor Association by Michael Boo, Suzanna M. van Walraven^*, Jeremy Chapman, Brian Lindberg, Alexander H. Schmidt, Bronwen E. Shaw, Galen E. Switzer, Edward Yang and Torstein Egeland, Blood, 2010 Oct 4. [Epub ahead of print]

Abstract: Hematopoietic stem cell transplantation (HSCT) is a curative procedure for life threatening hematological diseases. Donation of hematopoietic stem cells (HSC) from an unrelated donor, frequently residing in another country, may be the only option for 70% of those in need of unrelated HSCT. To maximize the opportunity to find the best available donor, individual donor registries collaborate internationally. To provide homogeneity of practice among registries, the World Marrow Donor Association (WMDA) sets standards against which registries are accredited, and provides guidance and regulations concerning unrelated donor safety and care. A basic tenet of the donor registries is that unrelated HSC donation is an altruistic act; non-payment of donors is entrenched in the WMDA standards and in international practice. In the United States, the prohibition against remuneration of donors has recently been challenged. In this document we describe the reasons that the WMDA continues to believe that HSC donors should not be paid due to ethical concerns raised by remuneration, potential to damage the public will to act altruistically, the potential for coercion and exploitation of donors, increased risk to patients, harm to local transplantation programs and international stem cell exchange, and the possibility of benefiting some patients while disadvantaging others."

Previous posts:
Compensating donors: how about bone marrow? (in connection with which see Flynn v. Holder Challenge to the National Organ Transplant Act

Compensation for bone marrow donors: opposing views

HT: Rod Garratt (whose related papers are
“One Chance in a Million: Altruism and the Bone Marrow Registry” with Ted Bergstrom and Damien Sheehan-Connor, American Economic Review

and
Stem Cell Matching for Patients of Mixed Race” with Ted Bergstrom and Damien Sheehan-Connor


(About this latter paper he writes "Ted Bergstrom and I will be presenting this work at a session on The Economics of Blood, Stem Cell and Organ Donation at this year's winter meeting of the American Economic Association in Denver.  If you are interested in attending, the session will take place Jan 08, 2011 10:15 am at the Sheraton, Director's Row H.

Kidney paired donation conference: financing kidney exchange

A conference in Philadelphia today will take a look at a so far unresolved aspect of kidney exchange: how to finance it. Since transplantation is far cheaper than dialysis, this shouldn't in principle be a big problem, but there are still lots of kinks to iron out in determining who pays for what. I spoke to a similarly constituted group in Minneapolis in 2007...
Kidney Paired Donation Conference, Philadelphia, Pennsylvania, WEDNESDAY, OCTOBER 27, 2010

8:00 a.m. Welcome and Opening Remarks, Chris Pricco, Chief Operating Officer, Complex Medical
Conditions, OptumHealth Care Solutions

8:05 a.m. Introduction and Conference Overview, Dennis Irwin, MD, National Medical Director, Transplant Solutions, Complex Medical Conditions, OptumHealth Care Solutions

8:15 a.m. Kidney Transplantation: Alternative Donors, Lloyd E. Ratner, MD, New York-Presb - Columbia
Campus

8:35 a.m. The Unmet Need for Kidney Transplantation as Viewed by the National Kidney Foundation,
Bryan Becker, MD, University of Illinois-Chicago

8:55 a.m. The OptumHealth/UnitedHealthcare Experience with End Stage Renal Disease, Kidney
Transplantation and the Unmet Need, F. Gregory Grillo MD, National Medical Director, Kidney
Resource Services, OptumHealth Care Solutions

9:15 a.m. The United Network for Organ Sharing (UNOS) Pilot, Kenneth Andreoni, The Ohio State
University Hospitals

Representation and Overview from UNOS Coordinating Centers

9:45 a.m. Ruthanne L Hanto RN MPH, New England Program for Kidney Exchange

10:00 a.m. Dorry Segev, MD, PhD, Johns Hopkins Hospital

10:15 a.m. Michael Rees, MD, PhD, Alliance for Paired Donation

10:30 a.m. Jeffrey L. Veale MD, Ronald Reagan UCLA Medical Center

Successful Single Center Experience with Paired Kidney Donation

10:45 a.m. John Friedewald, MD, Northwestern University Hospital

11:00 a.m. Adam Bingaman, MD, PhD, Texas Transplant Institute

11:30 a.m. National Kidney Registry, Garet Hil, National Kidney Registry (Invited)

11:45 a.m. Kidney Paired Donation from the Donor’s Perspective, John Milner, MD, Loyola University
Medical Center

12:00 p.m. The OPO perspective, Speaker TBD

12:15 p.m. Summary of the recent Living Kidney Donor Follow-Up: State of the Art and Future Directions
conference, Alan Leichtman, MD, University of Michigan

12:30 p.m. National Marrow Donor Program (NMDP): 23 Years of Experience in Establishing and
 Managing a Successful Program for Matching Willing Donors to Recipients, Jeffrey W. Chell,
MD, Chief Executive Officer, National Marrow Donor Program

1:30 p.m. Facilitated Discussion, Clifford Goodman, PhD, Vice President, The Lewin Group

4:00 p.m. Closing Remarks

Note: OptumHealth reserves the right to make any necessary changes to this program. Efforts will be made to keep presentations as scheduled. However, unforeseen circumstances may result in the substitution of faculty or content. Last Updated: 10/05/10

Organ donation legislation in California

Judd Kessler (who you could hire this year) writes about changes in CA law regarding organ donation, including live donation:

On Tuesday, October 5, California Governor Arnold Schwarzenegger ceremonially signed new organ donor legislation. There are two new bills that make a variety of changes to policy for both live and deceased organ donation in California. Here is a summary.


SB 1395 makes two changes. First, it authorizes the creation of an:
"Altruistic Living Donor Registry" where individuals can state their willingness to be a live kidney donor. (The bill allows for the possibility of extending the registry to other organs and tissues in the future.) The living donor registry would make information about potential donors available to facilitate pairwise exchanges and donor chains. According to the bill: "(a) ... The donor registry shall be designed to promote and assist live kidney donations, including donor chains, paired exchanges, and nondirected donations. The registrar shall be responsible for developing methods to increase the number of donors who enroll in the registry. (b) The registrar shall make available to the federally designated organ procurement organizations (OPOs) and transplant centers in California information contained in the registry regarding potential altruistic living donors. This information shall be used to expedite a match between identified organ donors and potential recipients."

Second, SB 1395 changes how the department of motor vehicles asks people whether they would like to register to be an organ and tissue donor upon death (i.e. a deceased donor). Currently the DMV allows potential donors to opt in. The application for a new or renewal driver's license or ID card has space to indicate a willingness to join the registry. Starting July 1, 2011, the donor registration question will require an "active" or "mandated" choice. According to the bill, the application will now: "contain a space for the applicant to enroll in the Donate Life California Organ and Tissue Donor Registry. The application shall include check boxes for an applicant to mark either (A) Yes, add my name to the donor registry or (B) I do not wish to register at this time." In addition, the DMV: "shall inquire verbally of an applicant applying in person ... at a department office as to whether the applicant wishes to enroll in the Donate Life California Organ and Tissue Donor Registry."

In Governor Schwarzenegger's speech at the bill signing he called this change to mandated choice "the next best thing" to an opt out system, where individuals would be deceased organ donors by default. He said an opt out system had been suggested to him by Steve Jobs, who recently received a liver transplant and was also in attendance at the bill signing, but that an opt-out system was not plausible due to constitutional concerns. In the Governor's words: "And we have to give [Steve Jobs] a lot of credit, because he came back, apparently from Europe or from somewhere where he called me and he said that, you know, in Europe, in Spain, they have no waiting list because you can only opt out; that if you don’t opt out then you are automatically on a donor list. So we tried to copy the same thing and we talked about that seven months ago. But our Constitution in the United States is different than the Spanish Constitution, so we could not legally do that. So we did the next best thing."

Another bill generated protections for employees who want to be living organ donors or bone marrow donors. SB 1304 requires private employers to provide paid leave for their employees who are organ donors (up to 30 days) or bone marrow donors (up to 5 days) and prevents private employers from blocking such donations by its employees or punishing them for donating. State employees already had this paid leave.

Compensation for bone marrow donors: opposing views

In November I wrote about a lawsuit to overturn the ban on compensation for bone marrow donors: Compensating donors: how about bone marrow? . Commentary in support of the lawsuit suggested that perhaps bone marrow had been unintentionally included in the more general ban on compensation for organ donors.

More recently, some of the organizations connected with bone marrow have come out against compensation: Leading Transplant and Transfusion Organizations Join Forces in Effort to Keep Bone Marrow Donation Voluntary .

"Voicing concern about the potential impact on patient and donor safety, nine leading international health organizations have formed a coalition to oppose compensating people who provide bone marrow for transplantation.

"The organizations — each a leader in the field of transplantation and transfusion therapies — have joined forces in the face of a lawsuit aimed at overturning current U.S. law regarding bone marrow donation. The Institute for Justice is seeking to reverse the National Organ Transplant Act of 1984, as it applies to the prohibition on compensating bone marrow donors. ...

"The coalition includes the NMDP, America’s Blood Centers, AABB (formerly American Association of Blood Banks), the American Society for Blood and Marrow Transplantation, American Society of Histocompatibility and Immunogenetics, the American Society of Transplantation, International Society of Cellular Therapy, The Transplantation Society, and the World Marrow Donor Association.
They oppose changing the current law, citing these reasons:
Protecting Recipient and Donor Safety
A complete and truthful health history is critical to ensure that individuals are eligible to donate and that donated cells are free from infectious diseases. There is a substantial body of experience that people wanting to sell their body parts are more likely to withhold medical details and information that could harm patients.
Maintaining Altruistic Motivations
Studies have shown that compensating donors would deter those who are willing to donate for purely altruistic reasons. The eight million members of the Be The Match Registry® — in addition to the five million volunteer donors on international registries — are proof that people do not need material incentive to save a life. Current law already allows donors to be reimbursed for out-of-pocket expenses and lost wages. The NMDP and other organizations maintain funds expressly for this purpose.
Avoiding the Creation of Markets in Marrow Donation
Compensation has the potential to create markets for marrow, which could have detrimental effects for both donors and patients. Sellers influenced by possible financial gain could ignore the health risks associated with donation or be coerced by third-party organizations that would profit from a marrow sale. In addition, markets put physicians in the morally dubious position of carrying out medical procedures solely so that sellers may profit.
”The creation of markets is likely to elicit criticism from groups that oppose treating the human body and its parts as property,” said Art Caplan, professor of bioethics at the University of Pennsylvania. “To risk potentially undermining support for marrow donation by allowing donor compensation is irresponsible and short-sighted.”
Ensuring Patients’ Access to Treatment
While the Institute for Justice’s lawsuit alleges compensation might increase patients’ access to bone marrow, the opposite is true.
Changing the U.S. law to allow compensation for marrow donors would set a precedent that could hurt the current voluntary systems for organ and blood donation, potentially undermining some patients’ access to safe organ transplants and blood transfusions. If donors were compensated, the United States would no longer conform to international standards for the use of volunteer donors in cell therapies. Thus, patients in the United States may be unable to have access to the worldwide search process. This would restrict Americans’ chances of finding a match and lives may be lost. "

Today is (also) National Donor Day

Happy Valentine's Day! Isn't it good to love and be loved?

Food for thought: Today is also National Donor Day.

"February 14 is the 10th National Donor Day -- a day to give the gift of life.
Fill out an organ and tissue donation card, register with your State Donor Registry and make sure your family knows you want to be a donor.
Join the National Registry of potential volunteer marrow and blood stem cell donors.
Learn how you can donate your baby's umbilical cord blood stem cells at birth.
Donate blood.
Why be a Donor?
The need is great and growing.
Almost 95,000 people are in need of an organ for transplant.
Approximately 35,000 children and adults in our country have life-threatening blood diseases that could be treated by a marrow/blood stem cell or cord blood transplant.
Every two seconds someone in America needs blood, more than 39,000 units each day, according to the American Red Cross.
Why do it Today?
Valentine's Day is the day of love and donation is the gift of life. Can you think of a more loving gesture than making February 14 the day you join thousands of Americans in making the donation decision?

National Donor Day was started in 1998 by the Saturn Corporation and its United Auto Workers partners with the support of the U.S. Department of Health and Human Services and many nonprofit health organizations. "

Compensating donors: how about bone marrow?

The National Law Journal reports: Cancer patients seek to overturn ban on paying for bone marrow

"Prohibiting someone from making money for donating an irreplaceable kidney is one thing. But what about donating bone marrow, which replenishes itself within weeks?

That question is at the heart of a new lawsuit, filed Monday, challenging the constitutionality of the federal law that prohibits compensating bone marrow donors. The plaintiffs want to make modest recompense for such donors legal — say, paying partial tuition for a college student or making a mortgage payment for a first-time home buyer.

In the lawsuit filed Oct. 26 in the U.S. District Court for the Central District of California, cancer and blood disease patients and health care advocates are suing U.S. Attorney General Eric Holder Jr. to enjoin enforcement of provisions of the National Organ Transplant Act of 1984 that criminalize compensating donors. They argue the statute violates due process rights and interferes with public health.

"This constitutional challenge is about an arbitrary law that criminalizes a promising effort to save lives," the complaint states. A bone marrow transplant is often the "only hope" for tens of thousands of Americans diagnosed with a deadly blood disease such as leukemia. "There is a desperate shortage of unrelated marrow donors, particularly for minorities," the complaint says.

Offering modest incentives to attract more donors could end that shortage, argued Jeff Rowes of the Arlington, Va.-based Institute for Justice, who is the lead attorney for the plaintiffs. "

Megan McArdle links to the Institute of Justice press release, and suggests that inclusion of bone marrow in the National Organ Transplant Act was simply a mistake.

A paper on bone marrow donation recently appeared in the American Economic Review, you can find an ungated version here: One Chance in a Million: Altruism and the Bone Marrow Registry
by Ted C. Bergstrom, Rod Garratt, and Damien Sheehan-Connor.

The paper argues that (because of the need for bone marrow matches to be perfect on the 6-vector of Human Leukocyte Antigens, and because of different distributions of these by race and ethnicity), we would get more bang for the buck by investing in recruiting more minority donors than additional random donors.

As it happens, for non-minority donors, the present policy in many places is just the opposite of compensating donors; if you want to register as a bone marrow donor you may have to pay the costs, presently around $65.

HT: Mary O'Keeffe and Steve Leider

Update, 11/4/09: Some comment on the legal theory of the case over at the Volokh Conspiracy, with a second and third post here and here and more to come...

Misc. organ transplant links

The links below, which I collected over some time but never turned into blog posts, all have something interesting to say about transplantation.

Should We Legalize the Market for Human Organs? An NPR debate among Sally Satel, Amy Friedman, and Lloyd Cohen (arguing for), and James Childress, Frank Delmonico, and David Rothman (arguing against).

Lingering myths discourage organ donation from American Medical News:
"Only 38% of licensed drivers have joined their states' organ donor registries, with many deterred by long-held misconceptions about how the transplant system works, according to poll results released in April."

Organ donations decline with economy from the Miami Herald.
The numbers of organ donors is down, and experts say one reason may be the recession. But "Because of legislative action, Floridians starting in July will be able to register online to be an organ donor at donatelifeflorida.org ."

In the Kidney Trade: Seller Beware
"Need a kidney? You may be able to buy one in Pakistan, which has become one of the world’s largest “kidney bazaars,” according to an article published in the May-June issue of The Hastings Center Report, a bioethics journal.
But who sells their kidneys, and what becomes of these people afterwards? The article, by two doctors and a psychologist from Karachi, paints an ugly picture of the kidney business and challenges the argument made by some that selling organs is a great financial boon to the poor and that they are grateful for the chance to do it. "

A Better Way to Get a Kidney Daniel Rose in a NY Times OpEd proposes we shift to "opt out" for deceased donors.

National Paired Donation Network (Steve Woodle) does an exchange in Pittsburgh: Kidney exchange benefits boy, 5, and woman

Larissa MacFarquhar: Paying for Kidneys
Megan McArdle: Department of Bizarre Arguments

"Exploitation" of the Poor is a Poor Reason to Ban Organ Markets from the Volokh Conspiracy

Milford men take part in four-way kidney swap (when we helped start NEPKE, only pairwise exchanges were initially feasible, but NEPKE became a pioneer in including 3- and 4-way exchanges in its optimization algorithm...)


Britain's only saviour sibling twins: At the age of two, little do they know it but Amy and Anthony Maguire are Britain's only 'saviour sibling' twins, created to be donors for their sick older brother.
Bone marrow donation requires a perfect match.
"The twins were born after IVF treatment was used to select embryos which are a match for their brother Connor so that blood taken from their umbilical cord at birth may one day be used to offer him life-saving treatment."

Organ donation to get halachic approval
A uniquely Israeli obstacle to organ donation wends its way towards resolution:
"Chief Rabbinate tries to encourage religious public to become organ donors by resolving halachic quandaries surrounding process, issuing special donor card "

Public call for organ donations (China Daily), and
China Announces Voluntary Organ Donor System (NY Times)
CD: "China launched a national organ donation system yesterday in a bid to gradually shake off its long-time dependence on executed prisoners as a major source of organs for transplants and as part of efforts to crack down on organ trafficking."...
"Currently about one million people in China need organ transplants each year while only 1 percent receive one, official statistics show.
Only about 130 people on the mainland have signed up to donate their organs since 2003, according to research on the promotion of organ donation after death by professor Chen Zhonghua with the Institute of Organ Transplantation of Tongji Hospital."...
"China issued an organ transplant law in 2007 that bans organ trafficking and only allows donations from living people to blood relatives and spouses, plus someone considered "emotionally connected."
However, organ middlemen have been faking documents in order to make a person who is desperately in need of money be considered "emotionally connected" to the recipients, reports said.
Living transplants increased to 40 percent of total transplants from 15 percent in 2006, Chen Zhonghua said.
"That's one of the daunting tasks facing us as we try to end the organ trade by establishing this system," Huang noted.
Other goals include preventing organ tourism, improving transplant quality, better defining donors' rights and satisfying patients' needs for transplants in an ethical manner."

NYT: "At least one million people in China need organ transplants each year, but only about 10,000 receive them, according to government statistics. Dr. Huang said that most of those organs — as high as 65 percent, by some estimates — are taken from death row inmates after their executions."...
"The practice of harvesting organs from executed Chinese convicts has been widely reported in the past, although it was only confirmed in 2005, by Dr. Huang, at a medical conference in Manila. The government has routinely denied other allegations that prisoners’ organs regularly found their way to the black market, often for sale to wealthy foreigners, and that executions were sometimes scheduled to coincide with the need for a specific organ.
At a news conference in Shanghai held Wednesday to unveil the new organ-donation system, one transplant surgeon was quoted by the newspaper as saying that the taking of organs from convicts was sometimes subject to corruption. "