Celebrating clarity, saving lives

UCLA Former Users From the Founder

A few days ago, we celebrated a win for everyone affected by kidney disease as one of the uncertainties facing living kidney donors was erased.

In response to Congresswoman Jaime Herrera Beutler’s (R-WA) amendment of the Family and  Medical Leave Act, the U.S. Labor Department issued a legal opinion stating its agreement that kidney donation qualifies as a “serious health condition.”

The August 28 opinion’s introductory words are as follows:

“This letter responds to your request for an opinion letter concerning whether organ-donation surgery can qualify as a ‘serious health condition’ under the Family and Medical Leave Act of 1993 (FMLA). … we conclude that it can.”

Such a casual-seeming word – serious– and yet this word and the political will behind it has the real potential to expand the potential pool of donors and represents what we in the transplant community hope will be a reduction in the racial and socio-economic disparities we see in who donates a kidney and who gets one.

It bears repeating: In the United States, African American patients are 3.1 times more likely than Caucasian patients to have kidney failure, but they are much less likely to receive transplants, especially from a living donor.* In 2014, African American patients in Missouri, for example, comprised 40% of the total end-stage renal disease patient population, yet they received only 9% of the kidneys given by living donors. We see similar disparities in patients of all races with lower levels of education and income.

Disparities like these are created by a scaffold of obstacles to donation. One obstacle is a lack of education received by patients with chronic kidney disease. Many patients don’t understand kidney transplant – they may have been overlooked in dialysis centers, or they don’t understand materials they’ve been provided; the reasons any individual patient has not been reached are numerous. How to educate patients is a complex set of issues my lab studies.

Then again, some patients are aware they would live much longer and better if they received a kidney transplant, but they choose not to ask friends and family to consider donating a kidney because they are afraid the donor will suffer medical and/or financial harm.

This is where the labor department’s opinion letter comes in. Until now, it has been uncertain whether a living kidney donor would be covered by the Family and Medical Leave Act (FMLA), which offers job security, wage, and insurance protections. The answer to whether one’s employer would be required to honor the FMLA following the donation of a kidney has been “probably.”

As one human resources publication, the HR Daily Advisor, said in 2017, “Voluntary organ donation likely is covered by the Family and Medical Leave Act (FMLA) if the donation requires inpatient care for the donor.”

The words likely and if: These may not dissuade a son from donating a kidney to his mother, even if it meant he might lose his job. But a neighbor? A friend whose budget is tight and who has dependents? These words could be a deal breaker. These are words people who live on lean budgets, or people who feel they can easily be replaced in their jobs, cannot afford.

With clarity that kidney donation is “serious” – and with the banishing of likely and if– the once reasonable fear that donating a kidney could lead to insurance or workplace discrimination has been reduced.

The clarity achieved in the labor department’s recent opinion kicks away one of the joints in the scaffold of barriers to equal access to transplant for people who need a transplant to survive and thrive. Clarity – it’s what we seek when we conduct a study or explain its findings in a paper. And it’s what we celebrate when the language of a government agency’s language is tightened in a way that ensures protections for patients.

*Living donor kidneys are associated with significantly longer survival rates.