'What if this was us?' The question that prompted a kidney donation and created a living donor advocate

In February 2019, Beth Burbridge was scrolling through her neighborhood's Facebook page before work when she saw a post from a neighbor who said his son, Jackson, was dying from a rare genetic kidney disease. Because of the genetic component of the disease, neither the man nor his son's mother were able to donate a kidney to Jackson. "They were looking for someone outside the family to be a kidney donor," Beth said.

The rare disease Jackson has is called dense deposit disease (DDD), a type of C3 glomerulopathy. This disease was previously called MPGN type 2. People with this disease have an overactive immune system that causes a buildup of proteins in the kidneys, damaging the fibers that filter blood. Jackson was diagnosed when he was 10 years old and the long-term prognosis was not good.

The Facebook post was accompanied by photos of Jackson and his sister growing up, playing with each other and living seemingly normal lives. They reminded Beth of her three boys and suddenly she thought, "What if this was us?"

"I can't imagine being in the predicament where you'd do anything to save your son, but you can't," said Beth. "I couldn't imagine what that feeling was like for them."

Beth went to work that day but thought about Jackson and his parents all day. That night, after her kids had gone to bed, she sat her husband down and told him she was thinking about donating her kidney.

After a lot of research about the process, including learning that there would be a transplant coordinator dedicated solely to her health, Beth and her husband agreed to move forward with testing to see if she was a match for Jackson.

In mid-April, Beth got to surprise Jackson and his parents with the good news – she was a match!

"That day is one that will stay with me forever, as well as them," Beth said. "I took cupcakes because I love to celebrate, and I got to share that I was a match. There were a lot of tears and it was just wonderful."

Beth and Jackson's transplant surgeries took place on May 14, 2019. Before Beth had even woken up from her surgery, Jackson's new kidney was working.

Unfortunately, just six days later, Beth was also working.

"As I prepared for surgery, my company responded back to my request for short-term disability stating that the surgery would actually be considered elective," explains Beth. "So, I could not use medical leave and had to use four vacation days and returned to work six days after surgery."

Beth was fortunate that she worked remotely, even before the pandemic. However, returning to work after a major surgery was still a challenge.

"It was painful to return to work so quickly and not just focus on recovery and the joy involved with saving someone's life," Beth said. "I made it happen, but I wouldn't want anybody else to have to go through that experience if they didn't have to."

With that goal in mind, Beth started writing letters to her state legislators in Kentucky.

"Honestly, the first time I ever wrote a letter to a legislator was in that week after my surgery," said Beth. "But I kept thinking that nobody else should have to do this. This surgery should absolutely not be elective. It's not elective to the person receiving my kidney – and it's a major surgery that really changed the trajectory of this other family forever."

Rep. Jerry T. Miller responded to Beth's letter, wanting to learn more about her experience and discuss what they could do to make changes in Kentucky. The two teamed up with AKF and Sen. Julie Adams to introduce new legislation to help living organ donors in Kentucky. They crafted and helped pass House Bill (H.B.) 46, which provides a separate paid leave for living organ donation and bone marrow donation to Kentucky state employees, and H.B. 75, which prevents life, disability and long-term care insurers from discriminating against living organ donors based solely on their gift.

"AKF staff have been absolutely wonderful partners in the state of Kentucky," said Beth. "They have provided data when required to legislators, made calls and sent letters. They have been great at ensuring that there's a spotlight on the bills to help them get passed."

For H.B. 75, Rep. Shawn McPherson joined their effort and in the 2022 legislative session, he introduced H.B. 47. This new proposed legislation would provide a tax credit for companies that provide employees with a separate paid leave for living organ and bone marrow donation. It would also improve Kentucky's grade on AKF's State of the States: Living Donor Protection Report Card from a C to a B. (The average grade for the U.S. is a D.)

H.B. 47 would also provide a tax credit for 40 hours of paid leave for organ donors and a credit for the expenses related to hiring a substitute employee to come in and do the work for that time.

"I've not met anyone who isn't a fan of living organ and bone marrow donation, it's just when you're a company, you're very focused on results. You may want to do the right thing, but it's hard financially to figure out how to do it. House Bill 47 helps that conversation along," Beth said.

Beth has worked hard to help these bills become law. In addition to writing to and meeting with her elected officials, she has also done research on comparable laws in other states, been interviewed for various media outlets to highlight the issue and has testified on behalf of the legislation multiple times. The first time she testified was on behalf of H.B. 46.

"I was incredibly nervous," Beth remembers. "I practiced my story and my testimony multiple times because I knew how important it was to get it right. One night, my boys left out their wrestling figures on the kitchen table, so I set all those little guys up and I practiced to them. I knew I needed to be able to verbalize this story that is so personal to me. I wanted to be able to share it and have the legislators understand what an important piece of legislation this was. So, I tried to bring my whole story, including emotion, to testimony that day."

One thought that helped Beth through testifying was knowing that "putting a face with the story and with the numbers and the statistics that legislators can see makes such a huge difference."

"Yes, these are all legislators, but they're also moms, dads, grandmothers, grandfathers, aunts, uncles to individuals who may have a connection to kidney disease or may someday have a connection to kidney disease," says Beth. "So, adding a personal story, I think is so important just because it helps legislators relate to what we're going through."

Unfortunately, H.B. 47 did not pass the Kentucky legislature this session. However, it will be reintroduced in next year's session. In the meantime, Beth reminds us that there is still work to do.

For those considering becoming an advocate for living organ donors, Beth says: "If I had to give any advice, I would say absolutely do it! It's one of the best things you can do, not only for yourself but in trying to enact change. You have the possibility to make an impact for everybody else who comes along after you and it's an incredibly rewarding experience."