Adam Jardine doesn’t want this to be a sob story.
“There are obviously sad aspects to it, but I try to stay positive throughout the whole thing,” the 34-year-old congressional staffer said.
For most of his life, Jardine has dealt with the symptoms of Alport syndrome, which means that for most of his life, Jardine has known he would one day need a kidney transplant.
The genetic disorder — Jardine inherited it from his mother — damages the kidneys and often leads to renal failure in male patients before they turn 40. Alport syndrome can affect your eyes and ears; Jardine started losing his hearing around age 14.
Jardine grew up in rural Wisconsin and was the first person in his family to go to college, where he worked at a Pizza Hut, using the tip money to buy his first pair of hearing aids just before starting law school. “Completely changed my life,” he said.
Until recently, his kidney disease was mostly manageable; his biggest health scare was a sudden gut pain two years ago that turned out to be colon cancer. (He’s cancer free today.) But about six months ago, “the symptoms really started to pile up,” he said.
“High blood pressure, nausea, I take potassium binders twice a day — my medication list is huge,” he said. “My legs are starting to get water retention.”
A kidney transplant could change that. Unlike many kidney diseases, Alport syndrome’s renal issues are effectively fixed by a successful transplant.
Jardine’s first transplant appointment, where his doctors will assess if he is both physically and mentally ready to begin the process, is later this month. After that, he’ll join more than 90,000 Americans on the waiting list for a new kidney. According to the National Kidney Foundation, every day 12 people on that list die, still waiting.
Many patients try to avoid that fate by finding a living donor to give them a kidney. (You only need one.) That hunt usually begins with family, but for someone like Jardine, that path isn’t very promising.
“Half my family has the disease, and in order for [the other half] to donate, they have to get over here [from Wisconsin], do multiple appointments, take off the work,” said Jardine, who works on Capitol Hill as legislative counsel for Rep. Debbie Wasserman Schultz, D-Fla.
His kidney disease is partially what led Jardine to Washington. After law school, he worked for a firm in Milwaukee, hating nearly every billable hour he spent there. But in his spare time he served on the National Kidney Foundation of Wisconsin’s board of directors. That volunteer work included trips to Washington to lobby Congress on “Hill Days.”
“When I would come here and advocate, I felt empowered. As a patient, it felt like I was more in charge,” he said. “The thought of being able to do that full time and then also bring that empowerment to others — that, to me, felt like a purpose.”
Jardine hasn’t been able to bring himself to directly ask someone to donate. “I took this stance where I didn’t ask anybody individually, like I felt like that was too much pressure to put on somebody,” he said.
Instead, he wrote about his kidney failure on social media, hoping someone might see it and take action. “So far, no one has stepped up,” he said. “So, I feel like I need to keep broadening my net until hopefully I can find a donor.”
There are a few bipartisan proposals that would make the donation logistics less daunting, including two that Jardine’s boss, Wasserman Schultz, has signed on to as a co-sponsor.
One bill would prevent insurance companies from discriminating against living organ donors. And another bill, which has attracted media attention recently, would provide “non-directed” kidney donors (i.e., people who donate their kidney without earmarking it for a specific person) a fully refundable $50,000 tax credit over five years.
Advocates say that bill could significantly increase the number of “altruistic” kidney donors who give to a stranger from around 400 a year to 10,000 a year. And because dialysis is covered by Medicare, this could also save taxpayers billions.
“Donating a kidney is a great self-sacrifice that individuals do without recognition,” Rep. Don Bacon, R-Neb., one of the bill’s co-sponsors, said in a written statement. “This legislation will be the first step in saving American lives, money for taxpayers, and decreasing the need for dialysis.”
Some bioethicists oppose the measure, saying that providing a tax incentive is too akin to paying someone to donate, a first step toward a dystopian future where the impoverished sell their organs to the highest bidder.
Jardine doesn’t see it that way. “I definitely understand that concern,” he said. “A tax break is a lot different than just, you know, straight up paying somebody.”
This bill would make a selfless act that’s just too costly for many more feasible, he said.
“That’s a huge ask: to have somebody donate the kidney. It costs money — it costs time, wages, all of that,” he said. “How else can you make somebody whole financially?”
But he doesn’t think it’d be a panacea.
“Could it increase the number of donors significantly? Yes,” he said. “I just don’t think it would ever catch up to the waitlist.”
What would, Jardine said, would be America switching from an “opt-in” system of organ donation to an “opt-out” system. In the U.S., that system is set at the state level — the most common way to consent to donating your organs if you die is to check a box on your driver’s license. Jardine would like to see states adopt the system used in some other nations, where you need to check that box to deny consent. Some studies predict that simple default switch would increase donation rates dramatically, although others question how much, if any, difference it would make.
In the meantime, he’s using his position in Wasserman Schultz’s office to push for policies that might help others like him.
“Adam diligently advocates for policies that help our most vulnerable citizens, on this and many other fronts. His commitment to that is inspiring,” Wasserman Schultz said in a statement. “For instance, together we’re also working to start a pilot program to provide financial assistance for hearing aids for children, recognizing the financial burden many families face in accessing this critical healthcare. As Adam embarks on his journey toward a kidney transplant, my thoughts and constant encouragement are with him and his family.”
Unless he can find a kidney donor, Jardine will need to start dialysis in the coming months, which means either spending up to four hours in a lab three days a week, or two-hour-long treatments at home nearly every day. And while dialysis will keep Jardine alive, he won’t feel healthy — it leaves patients feeling drained. “It’s a time extender until you can get the transplant,” he said.
Like he said before, Jardine doesn’t want this to be a sob story. His health issues haven’t just afflicted him, they’ve helped define him. They’re what led him to Capitol Hill, what led him to becoming a Democrat. “I was Republican my whole life,” Jardine said. “When I was on my parents’ health care — because of me — they were paying like $1,200 a month just in premiums. Like, that killed me when I was in college, just knowing that.”
“And then Republicans won a trifecta [in 2016], and the first … thing that they wanted to do was repeal Obamacare … [and] take away that preexisting conditions protection.”
“That’s when I said, ‘Nope, I’m a Democrat.’”
For more information about kidney donation, see the National Kidney Foundation or the Johns Hopkins’ Comprehensive Transplant Center.
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