Over 120,000 adults and children are waiting for an organ in the United States, and another patient needing an organ is added to the transplant list every ten minutes. On average, about 20 Americans die every day from the lack of available organs for transplant.
Specific to kidney transplant, it has been estimated that by 2015, over 700,000 Americans will have end-stage renal disease and over 26 million will have some form of chronic kidney disease. Kidney transplantation is the most effective therapy for kidney failure, which inevitably occurs in people with chronic kidney disease. Its benefits include significantly better quality of life, fewer medical complications and longer survival. Furthermore, transplant is more cost-effective than the only other alternative, dialysis. Successful kidney transplantation for donors awaiting transplants could save $10 billion per year — approximately $55,000 per year for the life of every functioning transplant recipient.
Therefore, there is great need to increase the number of organs available for transplant. Past efforts have focused on education, but these have been inadequate and not cost-effective. Herein I present the following four strategies to increase the number of organ donations:
- Repeal the dead donor rule.
- Change the United Network for Organ Sharing (UNOS) measurement from all-cause mortality to donation-specific mortality.
- Remove disincentives and provide incentives for organ donation.
- Increase living will usage and include organ donation.
From the earliest days of transplantation, surgeons have been held to the “dead-donor rule,” which posits that organ procurement should not cause a donor’s death. This was established by a committee at Harvard Medical School that aimed to increase organ donations, believing that setting a guideline regarding the appropriate time to harvest organs would make it easier to do so. They decided that a patient with no brain function could be “brain-dead” and therefore able to donate organs. This rule led to the Uniform Determination of Death Act, a model state law drafted in 1980 and subsequently enacted by most states, which says that brain-dead patients are legally dead. Prima facie, this seems to make sense.
However, upon further examination, there are some issues. First, the dead-donor rule is based on the false assumption that people must be dead to donate organs; obviously this is not true, as living people donate kidneys all the time. Second, almost all people that are “brain-dead” still retain hypothalamic function, and are therefore not truly “brain-dead” — perhaps what we mean by “brain-dead” is lack of cortical activity. Today, terminally ill patients’ best, and often only, chance of donating organs is by donation after circulatory death (DCD), where all life support is withdrawn while an organ-recovery team stands by. In order for these organs to be successfully transplanted in this manner, the donor needs to die within the first two hours of being taken off life support, or else the lack of perfusion would make the organs unsuitable for transplant. Even when DCD organ donors do die in the allotted time, we tend to recover fewer organs from them than from brain-dead donors, whose bodies aren’t subjected to this drawn-out process. Repealing the age-old dead-donor rule would allow organs to be procured before the patient “dies.” However, if surgeons are procuring organs before the patient is “dead,” this would make transplant centers look bad; this leads to my second point.
The United Network for Organ Sharing needs to change its method of assessing living donor programs by changing from measuring 30-day all-cause to donation-specific mortality. Under the current system someone could donate a kidney, die in a car accident on the way home, and be considered having a donor-related death — a check mark against that institution’s organ donation program. If the donor death rate increases, the transplant center is at risk of being put on probation or shut down. If UNOS changes this assessment criterion, one could imagine the following situation: a patient with a chronic disease that will eventually take their life but would have no effect on the health of their kidneys could donate a healthy kidney when his or her physician(s) feel that death is imminent. People with cystic fibrosis (CF) and amyotrophic lateral sclerosis (ALS) are great examples of qualifying patients. Another benefit is that it provides these patients with a meaningful, rewarding experience and legacy at the end of their lives.
Thirdly, we need to do better at removing disincentives from, and possibly provide incentives for, live organ donation. Live organ donors face multiple disincentives to donation, including medical expenses, travel expenses and lost wages which may not be covered under the Family Medical Leave Act (FMLA). The American Society of Transplantation (AST) and the American Society of Transplant Surgeons (ASTS) recently released a report calling for immediate movement through an “arc of change” in our nation’s attitudes and policies around organ donation including the immediate removal of disincentives and the need for expedited public discussion concerning the use of incentives to increase the national organ donor pool.
Providing incentives could include any of the following. For example, a lifetime “credit” at the top of waiting lists in the future for donors or their family members can be earned. Also, donors could possibly qualify for reimbursements directly proportionate to the recognized medical risks of organ donation or earn tax credits; “valuable considerations,” such as one-time honorarium payments to donors, through regulated third-party entities, could also be introduced. Survey data has shown a general public acceptance of and increased likelihood of becoming a donor if disincentives are removed and incentives are enacted. Some might argue that this will incentivize only poor people to donate and assume these risks; however, our society routinely pays people to take on extra risks, such as payment for construction workers and firemen. In addition, it is already accepted to pay for egg and sperm donation. Egg donation is not a benign procedure, as it carries the risk of ovarian hyperstimulation and thromboembolic events; some even believe that the hormonal treatment could result in a higher incidence of ovarian cancer later in life. Lastly, a recent cost-benefit analysis revealed that compensating kidney donors could save $46 billion per year; this figure includes the lives saved, the decreased dialysis expenses and the better quality of life in people getting transplants instead of chronic dialysis. Of this amount, taxpayers would save about $12 billion per year.
Lastly, our medical system needs to improve and expand end-of-life planning and advanced directives. Specific to organ donation, all living wills should contain a statement about what to do with their organs if they should be amenable for transplant. There are a substantial number — although to my knowledge, this number has not been well documented — of patients that die in hospitals with healthy kidneys that could be suitable for transplant. Examples include the aforementioned patients with CF and ALS. These patients have many years to think about donating organs before they reach the point of “imminent death.”
At the end of the day, there remain over 120,000 people waiting for an organ, and an average of 20 people die every day waiting for an organ. Unfortunately, our previous efforts to increase organ donation have been ineffective. Now is the time for implementing innovative solutions to save lives.
Contributing Writer
University of Wisconsin School of Medicine and Public Health
Ryan is a Class of 2020 MD/PhD student at the University of Wisconsin School of Medicine and Public Health. He graduated in May 2012 from the University of Wisconsin-Madison with a BS in molecular biology. He enjoys thinking and writing about health care policy, and is also an avid tennis player, instructor, coach, umpire, and fan.
