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Heart Transplant Candidate Now A Reluctant Activist

Randy Shepherd, 36, shown with his wife, Tiffany, was authorized by an Arizona state agency to receive a heart transplant. But now, because of budget cuts, the agency says it's unable to pay for the procedure.
Ted Robbins
/
NPR
Randy Shepherd, 36, shown with his wife, Tiffany, was authorized by an Arizona state agency to receive a heart transplant. But now, because of budget cuts, the agency says it's unable to pay for the procedure.

This time of year can be tiring for anyone. But one Arizona man is in the middle of a whirlwind that has nothing to do with shopping or parties. Randy Shepherd has little energy for any of that: That's because he needs a heart transplant.

But last month, NPR reported that the state of Arizona had cut funding for him and 97 other transplant patients.

The first time NPR visited Randy Shepherd at his home in Mesa, Ariz., he was reluctant to put himself forward as the face of a controversy.

Now, he seems to be the "go-to guy." He's getting calls from Bloomberg News, MSNBC, the New York Times, Forbes magazine, ABC and local media.

"The amount of attention that we're getting. I really dislike attention," he says. "I'm a private guy, but it's leading to a greater end."

That end would be a new heart for Shepherd. He was authorized to receive a transplant by Arizona's version of Medicaid, called AHCCCS. Then, the Arizona Legislature and Gov. Jan Brewer -- in an unheard of move -- rescinded the authorization to help solve a budget deficit. The cuts took effect in October.

One patient has died since, though doctors say even a transplant would not have saved him. For Shepherd, the issue's exposure has led to good things.

I'm overwhelmed at what people have done on my behalf.

After NPR's first story, a woman started a Facebook page called "Give Randy Shepherd His Heart." That and other exposure has led to nearly $60,000 in contributions to help Shepherd through the National Transplant Assistance Fund.

"I'm overwhelmed at what people have done on my behalf -- you know, people that don't know me, not personally anyway," Shepherd says. "But somehow they relate to my story, I guess. They see something in me and my family that could be them. I guess they thought, 'There but for the grace of God go I.' "

Next month, because of his disability at age 36, Shepherd becomes eligible for Medicare, which could pay for 80 percent of his heart transplant. Being placed back on the active list for a donated heart through AHCCCS is still the best option.

So Arizona's transplant centers are still struggling with the state. Nance Conney, who heads the transplant program at the University of Arizona, says they compiled a study showing how some tests and procedures could be eliminated to make transplants cheaper.

"We picked each organ and said, 'We can streamline this. We can make this better,' " she says.

The Arizona Legislature may take another look at the issue when it convenes in January.

Meanwhile, Shepherd is home watching his 3-year-old son, Nathan, while his wife, Tiffany, works. When Nathan cries, Shepherd tells him, "Oh man, come here, you're tough."

In a way, Shepherd, too, has gotten tougher. He's gone from a reluctant interview subject to a reluctant activist. He joined Democrats at a news conference calling attention to the cuts, even though he's a Republican. The activism, he says, came after he and his wife prayed.

"And then, this right here opens up. To me that's a direct answer to my prayers," he says. "So if I'm not going to take this opportunity and raise awareness, get information out there, then why even bother praying about it?"

Shepherd is fighting for his life. He's become convinced that speaking out will give him a better chance of saving it.

Copyright 2020 NPR. To see more, visit https://www.npr.org.

As supervising editor for Arts and Culture at NPR based at NPR West in Culver City, Ted Robbins plans coverage across NPR shows and online, focusing on TV at a time when there's never been so much content. He thinks "arts and culture" encompasses a lot of human creativity — from traditional museum offerings to popular culture, and out-of-the-way people and events.