Transplant Update: End the Wait: Making a difference in organ donation

Transplant Update: End the Wait: Making a difference in organ donation
By Matthew Cooper, MD

It seems simple and almost frighteningly obvious. Everyone-patients, organ donors, and caregivers-want the same thing: to end deaths among individuals with kidney failure. But why can't we get there?

In an industrialized nation like the United States, how can it be that several thousand people on the United Network for Organ Sharing (UNOS) waitlist will die each year because the opportunity for transplantation never arrives? The National Kidney Foundation's campaign to "End the Wait" for the more than 80,000 Americans waiting for a kidney transplant is worthy of praise and support.

But the Foundation has been criticized by some for its position against payment for organ donation. Its opponents cite the dire need for a solution to the organ shortage problem that demands thinking outside the box.

The NKF's "End the Wait!" program's recommendations seek not only to answer the critics with opportunities to increase the quantity of donors and the quality of transplant outcomes, but also to remove the disincentives to living donation, of which there are many. This perspective is a broader, more comprehensive and practical approach that deserves more discussion.

Living donation demonstrated tremendous promise with numbers exceeding deceased donation within this current decade. It seemed a solution to the supply and demand problem that haunts transplant professionals was on the horizon. But as quickly as the answer seemed to be upon us, it was soon a distant memory. Trends in living donation have demonstrated steady declines over the last five years. Although many inquire as to why this may be, the NKF recognizes the issues and provides an approach to reverse this trend safely within the End the Wait! campaign. The major issues are donor out-of-pocket expenses, donor medical and psychological safety, and medical insurance issues following donation.

Living donation, we've learned, is not without its cost. The medical community has spent decades since the first living donor transplant in 1954 seeking to demonstrate the medical and psychological safety of organ donation. We've only come to realize that an individual's ability to demonstrate the ultimate act of altruism is often fraught with many hurdles before, during, and after the surgical procedure. Many of these we've found out the hard way, after the fact-when our ability to intercede or to actively participate is lost. Living donors spend on average $400 in non-reimbursed expenses (travel, lodging, lost wages) and have lost their jobs, their salaries, and their livelihood due to the needed time away that may not fall under the auspices of the Family and Medical Leave Act of 1993. Although seemingly reprehensible to the onlooker, it is perfectly legal in many instances.

Many donors (for that matter, many Americans) do not have health insurance. Although the donor evaluation and hospital costs have long been covered by the recipient's insurance plan, whether that is privately funded or governmental support, no coverage exists beyond three to six months from donation even for conditions that may be related to the donation. This lack of personal insurance, however, often correlates with 'lost to follow-up' when clinicians seek to gather objective and subjective data on the short and long-term health consequences of living donation. This fact has been a contributor to our lack of more detailed knowledge of the effects of donation in people from different backgrounds and cultures. We act in good faith, utilizing information published in peer-reviewed journals using data-driven evaluation protocols, and we aim to the highest ethical standards to ensure the first rule of the Hippocratic Oath-first, do no harm-is preserved. But we need more comprehensive data.

Knowing this, many transplant centers will not evaluate individuals who are unable to demonstrate insurance coverage. They cite the non-reimbursable cost to the center for living donor follow-up visits and the real need for long-term health maintenance exams beyond the mandated two years of United Network for Organ Sharing reporting following donation. Few can expect this to occur with regularity or comprehensive testing in the absence of third-party payers.

Equally concerning are the documented difficulties that previous living donors experience with obtaining life and health insurance after the donation as a form of pre-existing condition.

With this in mind and responding to a host of concerns from previous living donors and their families, the Organ Procurement and Transplantation Network (OPTN) sought to strengthen and refine the evaluation and consent process for living organ donors. Through the work of many, including those that had acted as living donors, guidelines were created based upon center's best practices, the medical literature, and public comment that convey the inexact nature of donor evaluation, the potential complications of the procedure, including financial, and the absolute need for ongoing communication and follow-up with the health care team. Perhaps it's not surprising in this current state of affairs that living donation rates are declining.

But who suffers?
Obviously the intended recipient who sees the chance of freedom from a dialysis-dependent life suffers the greatest impact. And certainly society, both from an economic (compared to dialysis) and ethical (I would hope) standpoint, feels a degree of loss. But have we thought about the donor and what he/she stands to 'lose' by withholding the opportunity to see someone they care about deeply restored to their state of good health through transplantation-ultimately for financial reasons? Have we thought about the improved quality of life a family member or friend may have with a healthier transplanted relative or companion? How can we deny the health care (which we should demand for our donors) following their surgery for either post-donation complications or the completion of standard health maintenance, for what has previously found to be a healthy individual capable of proceeding with a surgery they neither personally benefit nor experience financial or health-related gain?

It is time for a change. The NKF's End the Wait! Campaign recommendations fall broadly into four categories.

improve the outcomes of first transplants
increase deceased donation
make the donation system and processes more efficient and equitable, and increase living donation.

The first three, albeit intuitive, are progressive and complementary and seek to improve opportunities for individuals with kidney disease based upon the tenants of the Final Rule-equality, fairness, and best utilization of limited resources.

The NKF includes living donation as a priority in its efforts to increase the number, quality, and outcomes of kidney transplantation for recipients on the waiting list-an important part of the solution to end the wait for a transplant. The NKF speaks of reimbursement for all expenses involved in the donation, including lost wages. The guarantee of access to health care coverage for medical expenses or disability and life insurance coverage for death related to the donation is highlighted. Furthermore, the NKF details the need to assure that donors will maintain their job, or an equivalent job available to them following donation.

In addition, overall possibilities for living donor systems improvements are discussed. These include the creation of a Living Donation Break-through Collaborative to highlight best practices (similar to the previously sponsored HRSA Collaboratives on Organ Donation and Transplantation); establishing/supporting a national program of paired kidney exchange, providing access to minimally invasive techniques for kidney donation, and supporting a system of ongoing collection and critical analysis of data for living donors.

Author bio: Dr. Cooper is an associate professor of surgery at the University of Maryland School of Medicine and the director of the school's Kidney Transplantation and Clinical Research division. He is also a member of the National Kidney Foundation's "End the Wait!" campaign taskforce.