Published on March 9, 2021 | More than ever, living donors are coming forward and generously volunteering to give the gift of life to hundreds of PKD patients across America. These living donors make up a vital portion of the kidney transplants performed in the U.S. each year. About one-third of the kidney transplants in 2020 were living donations.

Right now, there’s no federal legislation protecting living organ donors from losing their jobs just for taking recovery leave for transplant surgery. Living donors also experience higher premiums and even denial of coverage for most forms of insurance. In fact, 25% of living donors are denied or charged more for life insurance.

The Living Donor Protection Act

To address this insurance discrimination, the Living Donor Protection Act was first introduced during the 113th Congress (2013-2014) by Rep. Jerry Nadler (D-NY-10). Since then, the bill has been introduced four more times. But it has yet to pass Congress and be signed into law. However, the PKD, kidney disease, and transplant communities have seen growing support for this legislation. Last Congress, the LDPA received 26 bipartisan Senate co-sponsors and 101 bipartisan House co-sponsors.

We’re excited to see the Living Donor Protection Act reintroduced in the 117th Congress by Sen. Kristen Gilibrand (D-NY) and Sen. Tom Cotton (R-AR). With more momentum than ever, the chances of passing this critical legislation for PKD patients have never been better!

LDPA: What would it do?

The LDPA would have a seismic impact among the PKD and transplant communities. It prohibits discrimination in insurance practices based on an individual’s status as a living organ donor. This includes the offering, issuance, cancellation, breadth of coverage, price, and any other condition of a life insurance policy, disability-insurance policy, or long-term-care insurance policy.

Additionally, the LDPA federally designates recovery from organ-donation surgery as a serious health condition. This entitles covered private-sector and federal employees to much-needed medical leave. With the passage of this legislation, living organ donors may use time granted through the Family and Medical Leave Act (FMLA) to recover from their gift of donation, a small gesture that will undoubtedly result in better outcomes and reduced barriers to transplants for PKD and kidney patients.

Raising Awareness

The LDPA also requires the Department of Health and Human Services (HHS) to conduct public awareness campaigns that educate Americans on the benefits of living organ donation and these changes in insurance that would arise from this new law. Public awareness campaigns like this are critical to promoting living donations among potential donors who will no longer face insurance or workplace discrimination.

Additionally, this campaign will ensure existing donors are aware of their rights to access the necessary insurance without fear of exorbitant premiums or denied coverage.

The LDPA will lead to increased numbers of living donors by removing disincentives for living donation. That level of impact is critical, especially for kidney patients. There are currently over 100,000 individuals on the kidney transplant waiting list; however, just 22,817 transplants were performed in 2020.

This is an issue that acutely affects the PKD community. With so few treatment options and no cure available for PKD, transplant or dialysis are the only options for PKD patients with the onset of kidney failure. Often, the most functional treatment is a living donor. By righting the wrongs in coverage and encouraging living donation in the U.S., the LDPA will result in undoubtedly better outcomes for PKD patients and allow patients and their living donors the opportunity to thrive with proper care and an increased quality of life.

To get involved in advocating for the LDPA, take action by contacting your legislators through this PKD Foundation Advocacy Alert. With your help, this can be the year the Living Donor Protection passes Congress and is signed into law. We can finally protect living donors and their generous gifts to society.