Until 2014, a living organ donor could be refused health insurance on the grounds that the donation constituted a pre-existing condition. While the Affordable Care Act effectively eliminated that discrimination, some donors still have trouble getting insurance. It could be that smaller companies don’t know the law, or others continue to charge donors higher premiums. Donors can also have trouble getting life, disability, and long term care insurance.
A proposed law, the Living Donor Protection Act, could solve those problems. Introduced in the House at the end of February by Congressman Jerrold Nadler (D-NY) and Congressman Michael Burgess MD (R-TX), and in the Senate by Kirsten Gillibrand (D-NY) and Mark Kirk (R-IL), the act would do three things.
First, it would prohibit life, disability, and long term care insurance companies from denying living donors coverage or charging them higher premiums for that coverage. Second, it makes it clear that donors can use Family and Medical Leave Act time to recover from donation surgery and know their jobs will be there when they return. Lastly, the proposed law requires the Department of Health and Human Services to update all materials related to living donations to reflect the new rules and encourage more living donations.
“While I was the Vice-Chair of the UNOS Living Donor Committee, our committee would hear stories about specific individuals facing insurance or employment challenges after donating a kidney,” says Amy Waterman, Ph.D., founder of Explore Transplant. “These stories were rare, but very concerning.”
According to a 2007 study in the American Journal of Transplantation (ncbi.nlm.nih.gov/pubmed/17430400), as many as 11% of living donors had trouble getting or paying for insurance after their donations, and more than that worried about the possibility.
“The men and women who generously offer to be living donors must be protected and guaranteed the opportunity to return to work after their recovery,” Kirk told Explore Transplant. “This bipartisan legislation helps remove barriers so more people, like the one million patients in Illinois suffering from chronic kidney disease, can receive the lifesaving donations they need while donors receive the support they deserve.”
The bill, which is supported by organizations like the American Society of Transplant Surgeons, the American Society of Transplantation, the National Kidney Foundation, and the American Society of Nephrology, is currently in committee.
In the interim, potential donors should check their current policies to see if donating an organ will have any effect on any coverage. They are also encouraged to check out their state laws regarding living donors. A listing is available at transplantliving.org. For life insurance, and disability insurance related to donor surgery, the Living Organ Donor Network provides an option. There are often other financial repercussions for living donors. There is some help available through the National Living Donor Assistance Program. And Federal employees should note that they are eligible for 30 days paid leave when they donate an organ.
“This law is so important because it will protect people who are donating from being negatively affected from doing a generous thing,“ says Waterman. “It will also educate more people about the possibility of donating organs while they are alive.”