Delaware man advocated for kidney donation, but died before getting one

Moments after listening to the U.S. health secretary speak in the White House Rose Garden, Wilmington resident Bill Murray began to take his clothes off.

One by one, he took off his suit coat, his tie and his shirt to reveal his bright lime-green shirt underneath, which had the words "Got Kidneys" and a question mark shaped like the organ on it. People instantly began taking photos of him. 

Although he was at the White House to hear Health and Human Services Secretary Alex Azar discuss drug prices, Murray's friends say, no matter where he was, he found a way to tie in his advocacy work — specifically, the difficulty for thousands of Americans to find a kidney donation. 

Two weeks after that event, Murray died May 26 at age 56 from complications related to his chronic kidney disease, for which he never found a matching donor. 

"He didn't care what people thought," friend Jason Nothdurft said. "He wanted you to get the message, even if he was in the White House."

A fierce advocate for kidney disease awareness, Murray was never able to find a donor himself despite searching for more than five years — representing the harsh reality many in need of an organ transplant face. His funeral is Tuesday at St. John the Beloved in Milltown. 

Advocates say more than 100,000 Americans need a kidney, with 15,000 transplant surgeries occurring ever year. About 20 people die each day waiting for a transplant.

In Delaware, about 500 people are waiting for an organ transplant, said Howard Nathan, CEO of Gift of Life. 

That organization, for which Murray volunteered, coordinates all tissue transplants in Delaware, eastern Pennsylvania and New Jersey.  

Before being diagnosed with chronic kidney disease in 1996, Murray worked as a self-employed plumber. At first, Murray didn't want anyone to know he had the disease, keeping it a secret for about 16 years, he said in a video for the National Kidney Foundation. 

He didn't start telling people about his condition until he went on dialysis five years ago. He became involved in advocacy and volunteering when met others like him at a local kidney walk, said Marielle Van Thuyne, program manager for the Delaware Valley chapter of the National Kidney Foundation.

Years later, Murray became the foundation's "most active volunteer," she said. 

Six days every week, Murray woke up as early as 4:30 a.m. to undergo a three-hour at-home dialysis treatment, which would filter toxins out of his blood because his kidneys couldn't.

He completed his treatment early in the morning because his days were typically filled with meeting elected officials, attending advocacy meetings and driving throughout the state to talk to people who were also in need of a kidney, Van Thuyne said. 

Murray considered advocacy to be his full-time job once he stopped working as a plumber, she said. The dialysis began to take a toll on his body, though, making it difficult for him to work.

Van Thuyne recalls talking to Murray numerous times on the phone and how Murray would talk about how tired the dialysis made him. Hours later, she would see him at an event in Philadelphia, where he drove himself.

In addition to the foundation, he was also involved in groups such as the American Association of Kidney Patients, National Kidney Fund and American Kidney Fund. 

Attempts to reach Murray's family for comment were unsuccessful. 

Before he died, Murray met with lawmakers on Capitol Hill, urging them to pass legislation blocking insurers from limiting how much money dialysis patients can receive in charity to help pay for their treatment. 

He struggled to pay his medical bills and depended on nonprofits, such as the American Kidney Fund, to help cover insurance premiums, he said in a press release for the Chronic Disease Coalition. 

Murray also advocated for policies to make it easier for people to donate kidneys, including creating tax deductions, said friend Jason Nothdurft, who met Murray through volunteering for the National Kidney Foundation. 

Nothdurft, who lives in South Jersey, described Murray as "loud and obnoxious, but in a very endearing way." Murray was not afraid to speak his mind and was always looking to build relationships with those who had the power to make a difference. 

He recalls Murray talking to the Delaware congressional delegation in Washington as if they were his best friends, Nothdurfth said. When fellow advocates met with U.S. Sen. Tom Carper, Murray knew his way around the longtime senator's D.C. office, even the spots where Carper likes to take photos.

Murray had been there dozens of times before, Nothdurft said. 

Although Murray would, at times, become frustrated about not being able to find a donor, Nothdurft said, he never saw it slow down his volunteer efforts. A few months ago, Murray sent Northdurfth an email reminding him to set up a meeting with his Congress member. 

Murray was known to advocate for himself, said Todd Franzen, community relations team leader at Gift of Life. He created Facebook and Twitter accounts dedicated to finding a kidney, listing his age and blood type as well as a link for people to sign up to become potential donors. 

"It points to the fact that we need more people to say 'yes' to donation because there are a lot of Bills out there in need of an organ transplant to be healthy again," Franzen said.

Despite his connections and years of advocacy, Murray remained on a list of thousands until he died. His advocacy continued, in a way, following his death. 

His corneas were donated to two people, giving them the ability to see. 

Contact Meredith Newman at (302) 324-2386 or at mnewman@delawareonline.com. Follow her on Twitter at @merenewman. 

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