For individuals suffering with end-stage liver disease, liver transplants — true miracles of modern medicine — can save their lives. Yet every day in the U.S., seven people die while waiting for a liver transplant. Many more die awaiting hearts, kidneys, and other organs.
We have the technology, the high-tech operating rooms, the highly skilled clinical and surgical teams, all standing by. What we don’t have is enough organs.
In Southern California, the shortage is particularly acute. At Keck Medicine of USC, where I work, nearly 300 patients are waiting for liver transplants. They must be near death, with a high Model of End-Stage Liver Disease (MELD) score to make it to the top of the waiting list for a liver from a deceased donor. The MELD score ranges from 6 to 40; the higher the number, the more an individual needs a liver transplant. In Southern California, the average MELD score for transplant patients is 35; in other parts of the country, patients receive liver transplants with MELD scores as low as 28 or 30.
Living donors can change this.
The liver is the only organ in the body that can regenerate. That means an individual can donate a portion of his or her liver and completely recover, eventually returning to their studies, occupations, hobbies, and physical activities. The portion of the liver the donor retains and the portion that is donated both grow to normal size within a few weeks. Both donor and recipient livers are fully capable of performing the more than 500 functions this organ must do each day to keep the body healthy.
Living donation is also possible for kidney transplants, since most people are born with two kidneys but can function just fine with one.
As a surgeon in one of the few programs in the country that does living-donor liver transplants, I witness firsthand how individuals’ generosity can save lives. But without donors, my instruments and talents are useless, and I have seen far too many patients die waiting for the chance that advanced medicine can provide.
When a living donor matches a patient in need, surgery usually happens at a much earlier stage in the course of the disease. What’s more, that patient can be removed from the wait list and have surgery right away. This saves the patient years of dealing with end-stage liver disease, and potential death.
Living donors are usually friends or family members, but anyone can be a match. There are also anonymous donors — people who undergo major surgery and weeks of recovery to save the life of a stranger.
As a society, we admire living organ donors. What we don’t do is give them paid time off, guarantee their health care coverage, or pay for their travel or accommodations.
A hodgepodge of laws and policies across the country try to help. Paid time off to donate an organ is rare, and usually available only to government employees. A donor may be able to use the Family and Medical Leave Act, but that provides only unpaid leave. Some states offer tax credits to employers who provide paid time off for living donors. But donors are mostly on their own.
Here’s a best-case scenario: A recent anonymous donor at Keck was a teacher, so we scheduled the surgery during his winter break. He covered much of the rest of his recovery time with vacation and sick leave. He lives in Los Angeles near the transplant center, eliminating the need for costly travel and accommodations. But he is the exception, not the rule.
Potential living donors who are at poverty level can apply for a federal grant to cover travel and accommodation expenses, but that does nothing about their time off work. Those who have decent incomes receive nothing for travel or accommodations. In U.S. and Canadian studies of living donors, one-third or more reported lost wages of $2,500 to $3,000 in the first year after donation; in Canada, 15% incurred costs exceeding $8,000 Canadian.
It is also worrisome that living donors can end up in insurance limbo. The recipient’s insurance pays for the donor’s medical expenses, but the time frame varies. Some insurers cover the donor for 90 days, but who pays for any complications that happen after that? Only Medicare covers a donor for life. Frequently, the hospital covers donor expenses when insurance is lacking. Some donors may not have any insurance.
When President Obama signed the Affordable Care Act into law in 2010, insurers were required to cover pre-existing conditions. If the ACA is repealed, and the exclusion for pre-existing conditions goes with it, does the generosity of a living donor put him or her in jeopardy of never again being able to get health insurance?
President Trump last week called for revamping the country’s care for kidney disease, including increasing the number of living kidney donors by reimbursing living donors for expenses such as lost wages and child care. That is a great start, and should be applied to living liver donation.
The bottom line is that none of the existing remedies give donors enough paid time off to completely recover or to protect them from being financially vulnerable. This is not the way to encourage living organ donations.
We know there are people out there who would willingly donate a kidney or part of their livers but who simply can’t afford to do it. The decision to be a living donor should never be an economic one, but for many people it is. We must reduce every barrier possible — including economic ones — to ensure that anyone who wants to be a living donor can do so.
Yuri Genyk, M.D., is professor of clinical surgery at the Keck School of Medicine of the University of Southern California and chief of the division of hepatobiliary and pancreatic surgery and abdominal organ transplantation at Keck Medicine of USC.