Sen. Kelly Hancock opens up about rare kidney disease, as he advocates for Texas bill to increase living organ donors

Sign up for The Brief, The Texas Tribune’s daily newsletter that keeps readers up to speed on the most essential Texas news.

For 30 years, Sen. Kelly Hancock kept his battle with a rare genetic kidney disease quiet.

But last July, he received a lifesaving kidney transplant from his son-in-law, and now Hancock wants more Texans to know that they too could save someone’s life by becoming a living organ donor.

To that end, Hancock has filed Senate Bill 1249 to create a state program that would educate the public about becoming a living organ donor.

“That’s why we’re bringing it to life,” Hancock said in an interview. “We have a chance to make a positive difference.”

The Senate approved the bill unanimously and it now heads to the House.

At driver’s license offices, the state already asks Texans if they want to donate their organs upon their death. But Hancock’s bill would require the state to also educate Texans about becoming donors while they live by posting information about how to register in the offices and on websites of the Texas Department for State Health Services and the Texas Department of Public Safety, which runs the state’s driver’s license offices.

Approximately 10,000 Texans are awaiting a lifesaving organ donation, and 85% of them are waiting for a kidney. Most people can live normal lives with just one healthy kidney, according to the National Kidney Foundation.

Hancock, a North Richland Hills Republican, was diagnosed at age 27 with a rare genetic kidney disease that occurs when the immunoglobulin A antibody builds up in the kidneys. That leads to inflammation, which can harm the organ’s ability to filter waste from blood.

The disease varies from person to person, with some eventually achieving remission and others experiencing kidney failure. No cure exists.

When he was diagnosed, doctors told Hancock his kidney would eventually give out. For three decades, he managed the disease with a strict diet and exercise regimen and tried to live as normal a life as possible. He’s run six marathons in his life and been an elected state official for the last 16 years, all while his kidney has been functioning at less than 50%.

Seven years ago, Hancock’s doctor told him he was a few years away from needing dialysis, a procedure that removes excess water and waste from the blood when kidneys can no longer do that naturally. (Usually, a patient will go on dialysis when they only have 10% to 15% of their kidney function left.) He shared the news with his family but otherwise doubled down on his strict diet and exercise routine to stave off dialysis a few more years.

“[It] was funny because everybody thought, golly, he’s really getting healthy, and it was kind of the opposite,” he said.

But during the last legislative session, Hancock, who tests his kidney’s function on a daily basis and drinks a gallon of water a day to keep his levels where they need to be, started realizing his kidney was giving out. He had difficulty putting his shoes on every day. When he did his regular testing with his doctor at the end of the legislative session, his doctor called him back almost immediately and told him his kidney’s function had dropped to unsustainable levels.

That Thanksgiving weekend, Hancock, now 59, told his family the news. Eight of his family members, including his wife, siblings and three adult children, got tested to see if they were matches for a kidney donation.

In the end, two of Hancock’s daughters and one son-in-law, Greg Cox, were matches for a kidney donation. Both of those daughters had recently given birth and Cox, who doctors said was the best match, offered to give his kidney to Hancock.

“I found out and just immediately thought, ‘Yeah, I was made to do this. This is why I’m here,’” said Cox, 35, who still tears up talking about his decision to give his kidney to his father-in-law. “It’s just one of those moments where, a moment of clarity and feeling like this is what God has for me.”

The two men put themselves through a slew of tests and appointments to prepare for the transplant. On July 13, the two underwent the procedure at Medical City Fort Worth and Hancock was cleared to return to normal activities by October.

Cox, who testified in support of the bill in a Senate committee last week, said he hopes the bill will normalize people signing up to be living donors. He said he gets two reactions when people learn he donated his kidney to his father-in-law: adoration or utter disbelief.

“These surgeries are very common. The outcomes are extremely good, especially if you’re younger and in relatively good health,” Cox said. “For some minor discomfort and minor inconvenience, a chance to save somebody’s life and to improve somebody’s life 180 degrees is absolutely worth it. I hope that the reaction to living kidney donation is less of a weighty thing to people.”

The discussion was weighty even for Hancock’s family. After Cox signed up to donate his kidney, Hancock would tell him if he got a kidney from a deceased person, he would take that instead.

“I would tell him, ‘I’m giving my kidney to somebody, so you might as well take it,’” Cox said.

Chad Carroll, executive director of Donate Life Texas, which manages the state’s organ and tissue donor registry, said he supports Hancock’s bill because it could make more people aware that they could save someone’s life through organ donation while they are alive.

“If we only leverage what we run in Donate Life Texas in terms of the deceased registry, we just won’t be as effective getting after that problem of saving Texans’ lives,” he said. “So we must leverage living donation as an option to save additional lives.”

The general public is familiar with organ donation upon death, for which 14 million Texans have registered, Carroll said, but many Texans don’t know they could donate an organ such as a kidney while they are still alive.

“What this bill does is allows us to update the way we communicate with Texans about living donation, give them information on the various options out there,” Carroll said.

Hancock and Cox are now both fully recovered, and save some changes to Hancock’s taste buds (he’s picked up a liking for coffee since the surgery that didn’t previously exist) the two men are in fine health.

In testimony before the Senate Health and Human Services Committee approved the bill unanimously, Hancock took some legislative privilege to thank his son-in-law for giving him his kidney.

“Just to sort of, have it on the record,” Hancock said in front of his Senate colleagues, “Greg, thank you. You did literally save my life.”

We can’t wait to welcome you Sept. 21-23 to the 2023 Texas Tribune Festival, our multiday celebration of big, bold ideas about politics, public policy and the day’s news — all taking place just steps away from the Texas Capitol. When tickets go on sale in May, Tribune members will save big. Donate to join or renew today.