Appeal for donor illustrates shortage

It’s a conveyance of our time; a poignant message scrawled across the rear windshield of a car or truck, often as a memorial for a lost friend or relative, a kind of rolling obituary.

This one, on the window of a Volkswagen, suggested something more urgent. But just as poignant. “In need of a kidney. 305-857-5999. Blood type O+”

And there you have it. American healthcare, circa 2019.

To be fair, there’s a worldwide shortage of organ donors. Except in the U.S., recipients lucky enough to be picked for one of those scarce organs can also face overwhelming hospital, doctor and drug costs.

“I loved being here for all these years, living my American dream, while I was in good health,” said Mathieu Seydewitz, the VW owner in dire need of a functioning kidney. “But now it’s a tough deal. There’s no safety net. There’s not much help for a situation like mine.”

Mathieu, who lives in Fort Lauderdale and has a three-year-old daughter, has added his name to the organ waiting list, but the math is daunting.

About 118,000 American men, women and children (as of January) are hoping they’ll be chosen for a lifesaving organ, according to the US Department of Health & Human Services. Every 10 minutes, another wretched hopeful adds his name to the registry.

Juxtapose those 118,000 Americans with failing organs against the 36,528 transplants performed in 2018 (82 percent involved kidneys). No wonder 20 people in need of a transplant die every day.

Ten years ago, an illness initially misdiagnosed as a sinus infection turned out to be Wegener granulomatosis, an autoimmune disease that attacks blood vessels and threatens vital organs. Mathieu was left with ever worsening kidney damage.

Among other symptoms, he suffers acute anemia and fading strength and endurance. No small thing for someone who made his living as a country club tennis pro and instructor.

Seydewitz, 40, a native of Paris, came to the U.S. two decades ago to play tennis for Tulane University and transferred to join the nationally ranked team at Mississippi State University. He earned a degree in international business, but his career since graduation has been based on his athleticism. Lately, this athlete is down to 145 pounds and suffers perpetual exhaustion. So much for his career as a tennis pro. (Seydewitz, who speaks six languages, has managed to stave off utter poverty as a freelance online translator.) Bills have been mounting fast. So far, he has been able to avoid dialysis but that’s not for long.

Here’s what sick Americans do. His friend Patti Blankenship launched a social media campaign to raise money for his medical bills and to seek a kidney donor who’ll allow him to bypass the waiting list. Her idea is that if enough people see his story, some kind soul will offer up a kidney.

It’s a long shot but maybe his best chance in America, where the organ transplant regime is plainly rigged to favor the wealthy.

The New York Times reported in December that U.S. transplant centers winnow out transplant candidates who can’t demonstrate they can cover the cost of the operation. (About $400,000 for a kidney. Seydewitz thinks he’d need between $35,000 to $55,000 beyond what his medical insurance would cover.) Plus, recipients often face the costs of a lifelong regime anti-rejection drugs, some of which aren’t covered by insurance or Medicare and can cost thousands a month. Pick a recipient without financial resources, the theory goes, and a precious organ could be wasted.

Most donated organs are derived from recently deceased donors. In 2018, among the 17,553 U.S. donors, 10,722 were deceased. Most had opted into the organ donation system (often by checking a box on their driver’s license application). But donor programs are hampered by a peculiar phenomenon. While about 95 percent of Americans say they’re willing donors, only 58 percent actually opt-in. (Only .03 percent of those potential donors die in a way that allows organ preservation.)

A number of European nations are changing to an “opt-out” system, creating the legal presumption that a deceased person had been a willing donor unless they had formally declared otherwise. But that’s a controversial notion in the U.S. Maybe we could try the Israel way, which confers priority on transplant lists to those whose deceased family members were organ donors. Either system would probably save more lives than the American system.

It’s such a complicated dilemma. But one man has condensed those wretched complexities to seven words and a telephone number across the rear window of a VW.