It Shouldn’t Be This Hard to Donate an Organ

Simon* was stunned to see how exhausted and ill his best friend Andre* looked when he met him after not seeing him for a few months due to work-related travel. Andre had been diagnosed with kidney disease and had to start dialysis treatments during that time. He was looking for a lifesaving kidney transplant but had several years to wait on the national list for an organ. Simon, deeply moved by his friend’s situation, offered to donate one of his kidneys, and was confirmed as a match and approved by his healthcare team.

However, he was told by his employers that they could not offer him unpaid leave to donate and recover. He decided to donate anyway and went through the stress of supporting his own family without a salary during that period by taking out a loan. Just what he needed: more stress.

The Need for More Organ Donation

Over 100,000 people are on the national transplant waiting list and 17 people die each day waiting for an organ transplant. In contrast to deceased organ donation, living organ donation is when a living person chooses to donate an organ or a part of an organ for transplantation into another person, usually one kidney or part of the liver. In 2023, more than 6,900 people were living organ donors. Living donation is a deeply impactful, selfless, lifesaving act of generosity that significantly enhances quality of life for the recipient who has end-stage organ disease.

Given the dire need for more organ donors, we should be reducing barriers to donation, right? That is far from the current reality. Studies have shown that living kidney and liver donors have faced difficulty with health insurance and life insurance, including higher premiums and denial of coverage. In many instances, donors need to travel for the surgery and take time off work (often without a paycheck); many people hoping to perform a selfless act for a friend or family member simply cannot afford to donate or risk facing financial toxicity.

Policy Reform Can Help

The Affordable Care Act already prohibits health insurance companies from charging higher premiums or denial of coverage based on pre-existing medical conditions. And the Family and Medical Leave Act (FMLA) allows eligible employees to take up to 12 weeks of unpaid leave annually for organ donation or other medical reasons. This protects an employee’s job and requires their employer to maintain their health insurance. Yet, not all employers are required to offer this coverage, and not all employees are covered. While some states have stronger protections and incentives (including tax credits) for living donors, several do not.

A few pieces of legislation have been introduced in Congress to expand access at a national level. The bipartisan Living Donor Protection Act, introduced in the Senate in 2021, would add an extra layer of reassurance for those interested in donating, without fear that insurers may deny, cancel, or otherwise impose conditions on policies for life insurance, disability insurance, or long-term care insurance based on an individual’s status as a living organ donor. This bill will also clarify that organ donation surgery qualifies as a serious health condition under FMLA, ensuring eligible employees can take time off from work to recover from surgery without fear of losing their job. The Honor Our Living Donors (HOLD) Act would require financial aid for organ donation to be determined solely by the donor’s income level — as opposed to the current situation where aid is based on the organ recipient’s income. Finally, the Living Organ Donor Tax Credit Act would offer up to a $5,000 one-time refundable tax credit to living organ donors who were not reimbursed for the costs related to organ donation by any entity.

To date, these legislative initiatives haven’t seen significant movement. Contributing factors may include that only a small fraction of the many bills introduced in Congress each session are passed. Meanwhile, increasing polarization makes working across party lines challenging. But these commonsense measures must be prioritized.

Passing one — or all — of these pieces of legislation will make it more likely that people who want to donate an organ will move forward with donation. It will reassure them of the ability to take job-protected, unpaid leave for the surgery and recovery process. No one should go through what Simon went through in the process of helping his friend.

Every organ makes a difference. Let’s start by encouraging and incentivizing more living donors.

*Person’s name has been changed for privacy.

Ravi K. Mallavarapu, MD, is a transplant nephrologist and clinical associate professor at the University of South Carolina School of Medicine in Greenville, South Carolina.