Why All of the Talk About Incentives?

Kenneth A. Newell, MD, PhD, Emory University School of Medicine – AST President

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 in the American Journal of Transplantation titled "AST/ASTS Workshop on Increasing Organ Donation in the United States: Creating an “Arc of Change” From Removing Disincentives to Testing Incentives."

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.

Comments

As a practicing Transplant Nephrologist I support anything that will help improve the lives of our living donors. They selflessly undergo extensive evaluation, take time out of their lives to meet with the donor team and then undergo general anesthesia and a donor nephrectomy. I have met donors who years after donation have lost their medical insurance and seek care with untreated CKD, hypertension or diabetes. We as a society owe it to our donors to ensure they don't keep paying a recurring toll for the decision they made to help their loved one and their society. Donors are heroes, they must be honored for their selfless act.

I applaud the AST for this undertaking. It won’t be easy, and clearly it will be a legislative and bureaucratic slog, as it threatens our present yet inadequate comfort zone on living donation matters. No one likes to feel uncomfortable… just ask those awaiting a transplant. However, I suggest we consider another approach as well… Besides getting the disincentive/ incentive formula right, we would do our world a major service by nudging our society towards a cultural change: a transplant world of offering vs. a world of asking. Why can’t the desire to help a friend or family member in need be encouraged? Let’s get media, i.e. PSA’s, ads, discussions, etc. active in planting the seeds for considering living donation. Certainly our society has no problem encouraging and honoring those who volunteer as firefighters and soldiers. They volunteer to help and love. We too can do the same, without compromising any standards. Let’s proactively promote the assumption of some risk by willing and able living donors, just as we do to for other societal needs. Rick Antosh The Gift of Living Donation ("The GOLD")

Rick, I could not agree with you more. Living organ donors are heroes and we need to recognize them as such. This is another area where the AST should provide leadership through education and advocacy. Ken Newell

Indeed, why all the talk about incentives? Such talk right now seems to detract from what we can all agree upon - that removing financial disincentives should be a priority of the AST and ASTS. Energy/resources spent debating and discussing incentives right now is energy/resources NOT spent removing disincentives. Let's leverage the consensus opinion that we should remove financial disincentives and use AST and ASTS resources to implement the recommendations put forth at the "other" June 2014 consensus conference (organized by the AST's Living Donor Community of Practice), which had much broader representation from both AST and ASTS than the two incentives meetings. Let's work toward financial neutrality for living donors - something that many other countries have done quite successfully. The AST Board should establish a strategic plan for how this will be done by July 2016. Why wait? Why spend so much time on incentives, when so much work still needs to be done to remove disincentives? Follow the Living Donor COP's lead...they seem to be on the right course. Jim Rodrigue, PhD

Jim - I believe that many members of the AST board of directors as well as many of those who attended the "incentives" meetings agree with you. At this time what we can do is work to remove the well-recognized expenses associated with living donation that many of our patients experience. To this end, the AST and the ASTS are not waiting until 2016 but are already working on new strategies that could allow the reimbursement of donors for expenses such as travel and lost wages. Our societies also need to develop a strategy to ensure that every living donor has access to medical care. However, while we work diligently to achieve financial neutrality, many believe that it is appropriate to have open and transparent discussions about whether limited pilots of what some might consider to be incentives is appropriate. I recall from the excellent meeting that you and your colleagues organized that there was not a uniform opinion as to whether or not something like providing healthcare to former living donors would be an incentive. It seems that there is still room to discuss topics like this. Ken Newell

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