Wednesday, March 18, 2015

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
Financial Incentives for Donation Would Violate Global Standards and Will Not Work

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."

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.

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