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Encouraging Organ Donation: Removal of Disincentives & Consideration of Incentives

Part Three of a Three-Part Series

The shortage of organs for donation has been a long standing issue facing transplantation for years. As a resource for transplantation and patient advocacy, the AST must work to contribute to finding a solution. And after some thoughtful consideration, I believe there are two clear paths that AST can and should explore again in discrete and constructive steps.

The first path is toward increasing deceased donor donation. There can never be enough community education and engagement to explain the "miracle of transplantation" to the public. The latest endeavor on this front is called "Power2Save". This is far more than the fundraising concert of the same name. It is the next logical step in the AST's development as a Society and honors the dramatic expansion of our membership's diversity that has only been accelerating. We are now embracing the entire challenge of transplantation today and that must include the voices of our patients and their families when it comes to organ donation. Our audience is now becoming the entire nation and our first objective is to explain the human intersection between transplantation science and medicine, public policy and the impact of all the changes in health care.

Success should be benchmarked by how well we create new grass roots support for advancing clinical transplantation, funding science and making progressive public policy that benefits everyone involved in the process. Increasing organ donation in this process is now a logical and compelling piece of supporting transplantation for all of the stakeholders. The AST should also continue to strongly support scientific efforts to improve the quality of deceased organ donation and increase the number of available organs. A perfect recent example is the AST's support for the HOPE Act that was approved by the Senate and is now being considered in the House. It will allow HIV+ organs to be used for in clinical trials to prove their safety as the next critical step to their routine use in selected populations.

The second path is toward increasing living donor donation. The incredible growth of living donation over the last decade has nearly doubled the number of possible transplants and yet, still we remain far below the needed total numbers. This situation begs the question about what can we do to remove more of the disincentives in the process. First, there remain concerns in the public regarding the safety of living organ donation as well as the transparency of the process of donor selection. Several communities within the AST are working on addressing these challenges already. I support in principle the creation of a new AST web presence on living donation for the general public on this topic, as my recent forays to other available websites is scary (quite frankly) in the depth of misinformation and personal agendas.

But a new possibility for the AST to creatively reconsider the current situation in the US was suggested by recent discussions with the ASTS regarding a joint response to the follow-up conference in April organized by the TTS and their partners in Doha, Qatar on the 5-year impact of the original Declaration of Istanbul. The Declaration outlined an international position on the ethics of paid organ donation intended to send a clear message that exploitive, paid living donation practices that were sometimes even criminal in nature, were not acceptable. The AST signed a letter supporting the Declaration. In the intervening 5 years, the Declaration had a significant impact on reducing and marginalizing these exploitive practices.

However, even at the time, concerns were raised here that opposing those specific practices as documented then in developing countries was not equivalent to banning any future consideration of examining financial incentives for living organ donation in the United States. I now think the time has come for a joint AST/ASTS effort to review the current status of living organ donation in the US. I think this effort should consider the problem from the perspective of disincentives that can be removed and from incentives, including but not limited to financial ones that could be acceptable. The effort should harmonize with the ethical principles embodied in the Declaration of Istanbul, but should reflect the real situation of clinical practice and ethics in the US today. The effort should be inclusive of all the major stakeholders in transplantation, not just the AST and ASTS. It is way beyond me to advocate for any particular outcome at this point, but I will be actively exploring the principle of organizing the effort next. 

The solution to fair access to transplantation for all patients remains simple yet daunting. As a community and a nation, we must do more to close the gap between supply and demand of donor organs. It may sound trite, but the real answer remains, "It's donation stupid." It is exciting that there are a number of new and potentially productive steps on both paths forward for the AST to take. I am looking forward to your ideas and critical discussion of these plans in response to this Presidential blog series.


Surely the central issue is to avoid financial loss to the donor. This starts with time off work, for the work up, the donor operation and recovery. Plus follow up visits and form filling. Then there are medical costs associated with the procedure. Finally, there is damage to the insurance position of persons with only one kidney. These donors live a lifetime with a disability inflicted by lovingly giving 4 or 5 ounces of flesh. Reimbursement of the real costs of donation, rather than reward or incentives, seem to me to be the way to go, without crossing any of the lines drawn by Istanbul.

1. The commonest cause for requiring a renal transplant in the US is diabetes, with the risk of ESKD from Type II Diabetes increasing with age. Thus (i) There is a significant risk in the number of young living donors in the US, as a number are likely to develop diabetes given weight gain etc with increasing age (ii) A significant improvement in the waiting list could be achieved by reducing the incidence & severity of diabetes All professional medical societies need to lobby harder to facilitate public health measures w.r.t food content & distribution, activity within schools etc 2. Another contributor to the kidney wait list is a failed graft. There needs to be a redoubling of efforts to improve graft survival which includes the continued lobby of govt for maintenance immunosuppression 3. DCD/NHBD The largest contributor to growth in organ donation for kidneys & lungs in Australia

Money for organ donation - is very controversial. Reimbursements of donor expenses due to donation (both medical and non-medical, for donors and their families, if applicable) must be done completely, including future follow-up visits, insurance payment increase, etc. But reward for organs to living donors and deceased donor families - put everything into completely different field. Paid gift is not a gift anymore. Moreover, let's be realistic. Are you sure that you can not be forced to donate any organ under threats to you or your family? That could possibly happen in any country, not only in "third world". Donated organ pool will never meet demand. We can just slightly decrease this disproportion. (For example, graft failure due to absence of immunosuppression needs so called immuno-bill acceptance to shorten waiting list. Some borderline quality organs could be used to increase donor organ pool.)

There is a difference between removing disincentives and giving monetary incentives. If we start paying "donors," they are no longer donors (gift-givers). This sets us all up for approaching donors for use, i.e., exploitation, instead of accepting their gift. Being in a "first-world" country does not remove the threat of exploitation. We do plenty of exploitation, using people, in America.

Another way to consider increasing the donor pool is to focus attention on the motivations of and benefits to the families of deceased organ donors. The transplantation community is very aware of the benefits of donation for recipients, but this message does not resonate with all healthcare providers. However, every hospital is a potential donor hospital. Hospital staff have immense potential to increase both the quantity and quality (critical care) of donors after neurologic/circulatory determination of death. We may be able to encourage timely referrals for imminent brain death, improved critical care of catastrophic brain injured patients, and better collaboration with OPOs after authorization for donation by highlighting the end-of-life and grieving benefits for the families of potential donors. We may also be able to dispel some of the myths that inhibit people from registering to be organ donors. I have heard indirectly from many OPO staff members as well as directly from donor families that honoring their loved one's desire to be a donor and save lives is their main motivation. For families of patients who are not on state registries, the desire to create "meaning" and "purpose" in the setting of a tragedy is a powerful driving force. While I have often said that you have to have a recipient to have a donor, I don't actually believe that any more. Along those same lines, patients and families who say "yes" to donation are honored in donor ceremonies regardless of whether or not any organs are transplanted into recipients. I imagine that living donors have similar altruistic thoughts about the meaning of donation and trying to incentivize other motives may undermine the more powerful ones. Removing disincentives is a different matter that warrant attention. By adding "preserve the option of organ donation for every patient and their family" to the national montra of "ending deaths on the waiting list", we may be able to reach a wider audience and increase the donor pool. While this may seem like a self-serving message coming from the AST, organ donation doesn't really have a specific home in any professional physician society yet; parterning with trauma, critical care, emergency medicine, and palliative care societies to deliver this message may be helpful.

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