Living Donor Protection Act of 2023

By Melissa R. Collum

According to the Organ Procurement and Transplantation Network (OPTN) there are currently close to 104,000 Americans on the organ candidate transplant waiting list. There are almost 89,000 people waiting for a kidney, just over 10,000 people waiting for a liver, just under 4,000 waiting for a heart, and the list goes on.
In Wisconsin there are 1,553 people who are registered to need organ donations and 1,448 people who are active candidates.
Nationwide, according to the Mayo Clinic, every nine minutes another person is added to the organ donation waiting list and every day, 17 people die while waiting for an organ transplant. Most people who are on the waiting list have to wait between three and five years for before a qualifying transplant becomes available.
What many people are not aware of are the issues that come with trying to be a living organ donor. The total number of transplants that took place in the United States between January and May 2023 was 19,060, just over 16,000 from deceased donors and close to 3,000 from living donors. Many people know about registering to be an organ donor when you get your drivers license but what is not known is that only three in every 1,000 people die in a way that allows for deceased organ donation.
For Sara Hicklin and Jeff Nelson, the wait for their kidney organ donations was an arduous process. Both have polycystic kidney disease (PKD) which is an inherited disorder in which clusters of cysts develop primarily within your kidneys, causing your kidneys to enlarge and lose function over time.
The journey to find a kidney for Nelson started in 2012. He registered with the state and national organ procurement organizations. Nelson even went as far as to put up a billboard in the Milwaukee area where he lived at the time that read “I need a kidney. Can you share your spare? jeffskidney.com.” This brought media attention and worked to raise awareness about PKD.
In 2014, Nelson received a transplant from a living donor, his cousin Mary, but the transplant was not unsuccessful. “There was an error during surgery and a blood clot developed and the kidney failed,” notes Nelson. “I was on dialysis for almost four years and then received a deceased donor transplant in July of 2017. That transplant came from Missouri. It was a nation wide search, because of complications from the prior donation.”
For Hicklin, she was much more direct in her asking for a kidney. “It is hard to ask a perfectly healthy person to cut open their body,” notes Hicklin, “That is why it is called the Big Ask and in turn it is the Big Give. The women who donated on my behalf, her kidney did not come directly to me,” states Hicklin. “When she donated in my name, it activated me on a special list. My kidney came from Ohio. The number of the ways that they can do these donations, whether some is donating directly to one recipient or all of these different variations of paired exchanges.”
When an organ is found, the transplant centers contact the person on the waiting list and make an offer of the organ. “It is kind of like making an offer on a car,” notes Nelson. “The transplant center will call you and asks if you will accept the kidney. I will be honest with you, I have turned down deceased donor offers because of the narrative that was given about the kidney.” A comprehensive physical history of the person who is donating the organ is provided to the organ recipient in order to see if it is a viable match. For Nelson one the of the kidneys he turned down was because of the many potential physical problems it may have caused him in the long run.
When someone contacts a transplant center to be a living donor, they have a transplant coordinator. The identification of both the recipient and donor is kept confidential so that there is no undo influence. The majority of the time, when a donor is going through the rigorous testing it takes to qualify, the cost is covered by the recipients insurance. All you have to do to be a living organ donor is to contact a donation center of your choice.
Even though the front end testing and surgery is covered by the recipient’s insurance it is the recovery time  is not. This is what the Living Donor Protection Act 2023 (LDPA) is addressing.
In Wisconsin, there are two state statures that address living organ donation. First, that State employees are allowed up to 30 days of paid leave for organ donation, and five days for bone marrow donation. Second, an employee (non-state) is entitled up to six weeks of unpaid leave for organ donation. To be eligible, the employee must have worked with the same employer for 52 weeks and the employer must have at least 50 employees.
Currently there is no federal legislation protecting living organ donors from losing their jobs when taking recovery leave for transplant surgery. Living donors also experience higher premiums and even denial of coverage for most forms of insurance. In fact, according to OPTN, 25% of living donors are denied or charged more for life insurance.
To address this insurance discrimination, the Living Donor Protection Act (LDPA) 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.
In April 2023, the LDPA was once again reintroduced. It prohibits discrimination in insurance practices based on an individual’s status as a living organ donor. This includes the offering, insurance, 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 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.
“When my sister-in-law decided to donate a kidney,” comments Hicklin, “she was told that she had to be back to work in two weeks or she would lose her job.”
Nelson’s brother-in-law was going to donate a kidney to him, but when the family started researching, they found that he would not be eligible for long-term care or life insurance in the future.  “A lot of people have good intentions,” notes Nelson, “but they have to know what is going to happen.”
Kevin Longino, CEO of the National Kidney Foundation and a transplant recipient states on the National Kidney Foundation website “There is a critical shortage of deceased organs for transplant in this country. To fill that gap, Congress must do everything possible to promote living donation. We applaud our Congressional champions for reintroducing the Living Donor Protection Act and for recognizing the critical need to support living organ donors.”
On April 27 the bill was referred to the Committee on Energy and Commerce, and in addition to the Committees on Oversight and Accountability, House Administration, Education and the Workforce, and Financial Services. Since the first introduction in 2013 there have been no members who have picked up the bill to have a hearing to move it out of committee.
If you are interested in becoming a living organ donor you can contact www.organdonor.gov or talk to your physician.
“Having my kidney transplant has enabled me to live my best life,” comments Nelson. “I am able to work, I am earning a salary, I am not on disability. I am getting better, stronger, and I got a whole other life back. I am living my best days. I am so happy and so thankful.”