National Kidney Foundation Position on Increasing Organ Donation and Transplantation
There are 100,000 Americans waiting for a kidney transplant; but only about 19,000 will receive one this year. With a five-year average on the transplant list, more than 4,200 patients died waiting in 2016 alone. One-third of all transplants come from living organ donors who selflessly give the gift of life to family members, friends and other recipients they may not even know. However, the need for kidneys is outpacing the availability of organs, creating an organ supply crisis which the National Kidney Foundation (NKF) is working to solve.
NKF strongly believes that all expenses directly related to donation should be covered, so that donors and families end up cost neutral—prospective donors should neither incur any expenses nor engage in profiteering as a result of their life-changing gift. Expenses include anything related to the organ donation, such as:
Lost wages for the living donor during their surgery and recovery.
Travel expenses related to the donation including transportation, lodging and food.
Child care or dependent care expenses incurred during the donor’s recovery.
Living donor medical care and follow-up care for donation.
Short-term insurance related to death or disability because of donation-related complications, which will provide a safeguard for their dependents.
Paperwork or legal costs related to the donation.
Other expenses related to donation.
Alleviating Donor Concerns
In addition to ensuring that the donor is made cost-neutral, as described above, NKF seeks to alleviate other concerns a potential donor may have. In this regard, NKF would support:
Guaranteed access to follow up care, including lab work at appropriate intervals, if the organ recipient’s insurance or donor’s insurance cuts off coverage after a certain period of time. This follow-up care would be used to ensure that donors are protected.
A short-term health insurance policy could be provided to the donor as some donors are turned away by transplant centers because they do not have insurance. A limited policy with a set expiration date would guarantee that the donor’s medical needs are covered to meet post-transplant requirements.
Peer-mentoring from trained living donors to better explain the donation process and experience.
NKF does not believe that organ donors, or recipients, should engage in profiteering. Profiteering is defined as any payments above and beyond actual donation-related expenses, including cash, lifetime insurance coverage unrelated to donation, tuition or student loan payments, contributions to a retirement account, or similar options. Profiteering, as a result of organ donation, means that people could be coerced or forced into donation. Exploitation of donors worldwide is a serious issue that takes advantage of those who are most underprivileged and vulnerable. It has been demonstrated that selling kidneys has little long term impact on the sellers’ financial security and many actually end up worse financially, medically and psychologically:
The World Health Organization’s “Guiding Principles on Human Cell, Tissue and Organ Transplantation” maintain that payment for organs is “likely to take unfair advantage of the poorest and most vulnerable groups, undermines altruistic donation, and leads to profiteering and human trafficking”.
A study from Iran showed that the majority of people who sold their kidney regretted the decision.
The Institute of Medicine expressed concern with payment leading to human rights abuses and “manipulated consent”.
In addition, organ quality from donors who engage in profiteering could be lower since they are more likely to withhold important medical information (such as high-risk sexual behavior, drug use, or a family history of cancer) in order to receive some financial gain. This introduces medical risks to transplant recipients.
These are significant ethical and practical issues; and both the donor, and recipient, must be protected.
The National Kidney Foundation believes there are proven, safer, underutilized alternatives to increasing kidney donation which protect both the donor and the recipient. These include:
Promoting and expanding opportunities for matched donation on a national level (such as paired exchange and/or donor chains). Several years ago NKF helped enact legislation in Congress to clarify that paired exchanges do not violate the National Organ Transplant Act, helping more individuals serve as a living kidney donor who otherwise would not have been able to donate.
Removal of barriers to living donation. NKF is a longtime leader in organ donation and transplantation in the U.S. and believes that in order to increase the national pool of organ donors, it is critical that living organ donors do not bear any unnecessary burdens or restrictions which would serve as barriers to donation.
Most recently, NKF has supported the Living Donor Protection Act (LDPA) to promote organ donation and protect the rights of living donors. This bill prohibits insurance companies from denying or limiting life, disability and long term care insurance and from charging higher premiums to living organ donors. The bill also clarifies that living organ donors may use time granted through the Family and Medical Leave Act (FMLA) to recover from transplant.
Ensuring donors are cost neutral. Coverage of all costs associated with living donation evaluation and recovery, including lost wages, travel expenses, and dependent care is essential to ensuring that donors are cost-neutral.
Providing coverage for lost wages resulting from living donation could be in the form of paid employer leave, a tax credit for employers or the individual donor, or other means.
More than a decade ago, NKF recommended the establishment of a federal grant program to assist lower income individuals with travel and subsistence expenses related to living donation. This resulted in the creation of the National Living Donor Assistance Center (NLDAC) and more than 3,400 individuals have benefitted from it to date. NKF recommends an expansion of this program in order to assist more living donors.
Guaranteeing living donors access to life, disability and long-term care insurance and ensuring that donors do not lose their job after time off for surgery and recovery.
Increasing donation from Expanded Criteria Donors (ECD) and Donation After Cardiac Death (DCD) donors to make more organs available for transplant.
Covering the cost of immunosuppressive drugs for the life of the transplant for kidney recipients whose Medicare coverage ends 36 months post-transplant. This will enable recipients to receive immunosuppressive drugs that they are required to take daily to help reduce the likelihood of organ rejection. For many patients the costs associated with immunosuppressive drugs are prohibitive; leading patients to skip doses and risk organ rejection.
Assisting those who are considering living donation with practical information and support. NKF has extensive information about donation on our website www.kidney.org/livingdonation to educate kidney patients and families about the possibility of living donation.
Providing Peer mentoring through NKF Peers, a completely confidential program which connects potential donors with other donors who have already been through the process.
Educating patients, families and friends how to help find a living donor match through The Big Ask/The Big Give program. This educational campaign promotes awareness of living kidney donation for both the kidney patients who have difficulty asking someone to consider a kidney donation (The Big Ask) and potential donors (The Big Give). Free for patients and professionals, the program provides factual, unbiased information addressing common concerns and offers support in making a decision about living kidney donation. More in-depth training programs, designed to teach patients and families how to find a living donor, have begun pilot testing.
Increasing utilization of organ discards from deceased donors. Approximately 3,000 kidneys are discarded every year. Many of the discarded kidneys have an acceptable donor risk index, which means there are quality organs being discarded that could otherwise be used for transplantation.
The recently held NKFConsensus Conference to Decrease Kidney Discards aims to reduce the number of kidneys that are discarded in the U.S. The Conference brought together patients and families, transplant surgeons, nephrologists, organ procurement organization leadership, federal government officials and payers to identify the reasons donated kidneys are discarded, as well as develop practical solutions to increase the use of these kidneys.
NKF is working with various patient organizations and professional medical societies, collaboratively, to support these initiatives, and to push forward initiatives to address barriers to living donation.
In addition to these important first steps, NKF as an organization is focused on efforts to increase the early diagnosis of kidney disease in the primary care setting. This effort may be the best tool we have to reduce the kidney waiting list. By ensuring proper diagnosis, care and treatment, we can prevent, or delay, kidney failure and the need for transplants in the first place.
By maximizing the potential of these areas, donation and transplantation rates can be greatly increased, both safely and effectively.