Opinion: Why organ donors need our help

Editor’s Note: Sigrid Fry-Revere is a medical ethicist with a focus on patients’ rights. She wrote the initial draft of the 1990 Patient Self-Determination Act and started the first non-profit to exclusively represent living organ donors, the American Living Organ Donor Fund. She also served as the ethicist on the Organ and Tissue Advisory Committee of the Washington Regional Transplant Community from 2008 to 2018. The views expressed here are her own. Read more opinion on CNN.

The national Organ Procurement and Transplant Network (OPTN) has long drawn criticism for its handling of the organ donation and transplant process in the US. Over 100,000 people nationwide are currently waiting for an organ transplant and some 6,000 die per year while waiting, according to the Health Resources and Services Administration. The system has always been managed by the nonprofit United Network for Organ Sharing (UNOS). But in July, the US House and the US Senate passed legislation to open up the national OPTN to other organizations through a competitive contract process. The bill is now on President Joe Biden’s desk to be signed.

The changes that could come with this legislation, however, will likely not be the saving grace that many are hoping for. Instead, passing this law is like Congress rearranging the deckchairs on the Titanic.

Of course, we should increase the efficiency of the deceased organ donation system, but it would be a mistake to assume that breaking up the UNOS monopoly will do much to solve the organ shortage.

The truth is, sometimes market solutions provide answers only if you allow resourceful people to look outside the box for those solutions. The problem we need to solve is the shortage of organs from living donors, not the better management of organs from deceased donors. The bill focuses attention on a solution that will make only the smallest dent in the supply of organs and will not solve it. There are better ways to save more lives.

Less than half a percent (0.3%) of people in the US die under conditions that make it possible to use their organs for transplants. Organs must be preserved immediately to be viable for transplant, so almost all transplantable organs are retrieved from people on life support in hospitals.

A more effective answer to solving the organ shortage is better preventative care or artificial organs — biotechnology that can replace a human organ that is no longer functioning — but until we develop the biotech needed, the next best solution is living organ donation.

Over 95% of people on the organ waiting list can be helped by increasing the number of living organ donors, according to the American Kidney Fund. Although the 3% of patients waiting for heart transplants can only be helped through deceased donation, those waiting for kidneys (more than 85%), livers (10%), lungs (1%) and even segments of intestines (less than 0.2%) can all be helped with living organ donors.

Other countries have done a much better job of encouraging living organ donations. In Iran, for instance, donors receive incentives in the form of cash, goods and services. While the Dutch system doesn’t offer cash or goods as an incentive, the US should look to that system as an example because it covers expenses and health care related to the procedures necessary for living donation and any complications.

In the US, insurance practices regarding organ donation have changed over time. Currently, the organ recipient’s and the organ donor’s insurance (assuming they have insurance) argue about who should cover what, often leaving the donor with huge unpaid bills, particularly if the donor has complications.

The most important advantage the Dutch system has over the US system is that it does more to reduce the financial and health risks associated with donation.

The Dutch have a universal healthcare system but living organ donors get even better benefits than other citizens; normally, when someone takes sick time away from work because of a health condition, they get at least 70% of their normal wages. In contrast, organ donors who need to take sick time related to their surgery receive 100% of their wages. Donors also get coverage for potential complications.

In the Netherlands, financial support during recovery and coverage of complications is not limited by what all Dutch citizens get under their medical system. There is also a fund to cover specifically organ donation-related costs, such as travel for donors and their families to the transplant center, housing and food at the transplant center, babysitting during surgery and recovery and other incidentals. These benefits, on top of more overall health care coverage than provided in the US, give financial and health security to all donors regardless of their socioeconomic class or health outcomes.

Providing a Dutch-style security for donors was my mission when I started the American Living Organ Donor Fund (ALODF) in 2014. It was, as far as I know, the first nonprofit in the US to represent donors and their needs exclusively. All other related nonprofits I knew of at the time concentrated on finding organs for those who needed transplants, and helping donors was secondary to their mission. The ALODF’s focus on the donor was important; it is hard to fairly represent both the interests of people needing organs and those considering donation. An organization focused on saving the lives of organ recipients may (even if unintentionally) downplay the risks organ donors face.

Donors came to the ALODF with questions about both health and financial risks. Arguably, they were a self-selected sample, but most were worried about how their bills would get paid while they were recovering from surgery and how their healthcare needs would be met if they had complications, particularly if those complications didn’t manifest for years. The Netherlands had much better answers to these questions than I could provide US donors. The Dutch system provides a safety net, while donors in the US largely lack one.

During the time I was CEO and president, the ALODF did what it could to provide money to cover donors’ household bills and focused on trying to get donors more healthcare coverage for all medical expenses indefinitely. The “all medical expenses” coverage is critical because potential donors with fewer financial resources can’t afford to wait for reimbursement that only comes if and when a connection between their ailment and their donation can be proven.

The current US kidney donation system puts donors on Medicare if they donate to a patient on Medicare (which is true of almost all dialysis patients), but that coverage only lasts if the kidney recipient stays on Medicare. Usually, if the transplant is successful, the organ recipient will go back to work and choose to be covered by their employer’s insurance, not Medicare. Coverage ends, as well, if the transplant fails, or the transplant recipient dies.

The US problem of healthcare insecurity for donors could be solved by putting them on Medicare permanently, regardless of whether their organ recipients is on, or stays on, Medicare — and whether or not they are a kidney donor or another type of living organ donor.

Until we make more substantial changes to our living organ donation system, we shouldn’t expect our long waiting list of patients in need of organs to get much shorter.

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