Liver Patients Find Hope with Living Donors

Yuri Genyk, MD, is professor of clinical surgery at the Keck School of Medicine of USC and chief of the division of hepatobiliary, pancreatic and abdominal organ transplant surgery at Keck Medicine of USC. He is an expert in living donor liver transplantation, adult and pediatric liver transplantation laparoscopic donor nephrectomy for kidney transplantation, pancreas transplantation as well as non-transplant hepatobiliary and pancreatic surgery.

Seven people die while waiting for a liver transplant every day in the United States. In fact, the single biggest risk to a patient in end-stage liver disease is dying while waiting for a liver to become available.

Because the number of people who need a liver is so much higher than that of available organs for transplant, a patient in end-stage liver disease must go on a wait list, with those in the greatest need at the top. Under the current system, to get to the top of the liver transplant list, one must get very sick, and usually one must wait for years.  

There is a relatively easy solution for this situation if the patient has someone who is willing to be a living donor. Most transplanted livers are from deceased donors, but that doesn’t have to be the case. Because the liver can regenerate, a living donor can give up to 60% of their liver and it will grow back over the course of three or four months. The donor can completely recover, eventually going back to their normal level of activity.

With a living donor, a patient does not have to wait on the list, becoming sicker and sicker. The operation takes place at an earlier stage of the disease, while the patient’s body is better able to handle major surgery. A living donor saves the patient from years of coping with end-stage liver disease, and very probably saves the patient’s life.

As a liver transplant surgeon at Keck Medicine of USC, one of the few medical centers in the country that performs living-donor transplants, I have witnessed firsthand how remarkable this gift of life can be. A living donor may be a close family member, a friend or a total stranger. It is always a moving experience for both the patient and the donor. Every living donor I have spoken to said that the recovery was difficult, but they are glad they did it.

But without donors, my surgical skills are useless. And our health system is not set up to help people who might wish to donate. We do not guarantee health coverage for donors. We don’t pay for their travel and accommodations. And we don’t give them paid time off from work.

Naturally, a living donor must have the time and resources to heal. He or she must take time off of work immediately after the surgery, and may have to do so more often while the liver regenerates. A donor may be able to use the Family and Medical Leave Act to get time off of work to recover, but that time is unpaid. Paid time off for an organ donor is rare. In a study of organ donors in the United states, more than one-third reported lost wages of up to $3,000 in the first year after donation. It’s a burden many potential donors simply can’t bear, particularly if they have lower incomes.

Donors also end up in a precarious situation with health insurance. The donor’s medical expenses are paid by the recipient’s health insurance for the surgery, and for varying amounts of time afterward. Many plans cover the donor for 90 days after surgery – exactly enough time for the liver to regenerate if the donor heals with exceptional speed and everything goes perfectly. There is no room for setbacks or complications after the 90-day period.

Under the Affordable Care Act, insurance plans are required to cover patients with pre-existing conditions, but if the ACA is repealed, the requirement to cover pre-existing conditions goes with it. People who have done one of the most generous things a human being can do will be penalized with a lifetime of being unable to get affordable insurance.

Our current system simply does not do enough to protect the physical and financial health of living donors. That renders thousands of willing donors financially unable to do so, and keeps the wait lists far too long. We must do everything we can to remove the obstacles that prevent people from giving the gift of life.