Des Moines-area golfers chip in to drive awareness of kidney disease
National Kidney Foundation advocates for 'Living Donor Protection Act'
WEST DES MOINES, Iowa—Auto dealer and philanthropist Rich Willis spoke a simple message Sunday night to a group of golfers gathered by the National Kidney Foundation (NKF): consider giving up a kidney.
“God blessed us with two of these,” Willis said, pointing to his lower back during a ceremony where he received the Arthur P. Pasquarella Leadership in Action Award for his support of the group’s Iowa-Nebraska chapter. “We can all be a donor.”
Twenty years ago, an employee at Willis’ car dealership needed a kidney to survive. Willis recorded a voicemail to send to 250 employees asking for a volunteer to donate. Half an hour later, a co-worker walked into his office to answer the call.
“Sure enough, they were a match—as the Good Lord would have it,” Willis said in brief remarks accepting the award. “And one exchanged to the other… So, let’s all raise our glass and have a cheers to the work of the [National] Kidney Foundation—not just to raise money, but to save lives, to keep people off dialysis.
For years, Willis spurred donations for NKF’s Konica Minolta Golf Classic, an annual charity event founded in 1987 featuring thousands of golfers at 30 tournaments across America. Golfers, who raise more than $3.5 million each year for the nonprofit, compete for a chance to qualify for the national finals at California’s Pebble Beach.
Gene Dickey—the executive director of NKF’s Dakotas, Iowa and Nebraska chapters—is a numbers guy. Dickey, who organized the tournament featuring nearly 200 local golfers Monday at the Des Moines Golf and Country Club, speaks about shocking statistics and shares stories to spread the word about an unsexy but deadly serious topic: kidney disease.
One in seven Americans has kidney disease, but only 10 percent are aware of it. One in three people are at risk of developing kidney disease due to diabetes, hypertension and other factors.
Dickey knows this first-hand.
During college, he experienced a stress-related blackout. His doctor told him his kidney function dropped to 50 percent, and he would need to get a transplant or go on dialysis within 10 years. In 2008, he eventually received two kidneys—one from a living donor and one from a deceased donor.
“I was lucky to prepare myself. I knew this is the road that I have to go down, and this is where we're headed. Not a lot of people get that opportunity,” Dickey said in an interview. “That’s why it’s important to have a conversation with your doctor, know your numbers, know what’s going on with your health.”
Andrew “Thor” Herbert, a long drive athlete and entertainer, has raised money for NKF at their golf tournaments since 2020. He hit up foursomes on Hole 13 with a pitch to donate to fund glomerular filtration rate (GFR) screenings, a blood test that checks kidney function. Kidney disease often goes undetected for years until a patient experiences kidney failure.
“We're trying to raise money for a purpose,” Herbert said in an interview between drives. “We're simply trying to provide awareness to people. One in three people are at risk for kidney disease—so simple screenings, right? We’re trying to get people out there, knowing that it's accessible, and then providing resources for them to further get that support.”
Mike Ashley, a volunteer at the event, got his first kidney transplant in 2009. Seven days later, he joined NKF’s annual walk-fundraiser along with his wife, Dawn.
In 2020, Ashley’s transplanted kidney failed, requiring dialysis treatment five days per week until he became fortunate enough to receive another kidney. Ashley also raises money for NKF’s annual spring walk: his goal for the May 2023 Iowa walk is $10,000. During the COVID-19 pandemic, he shifted gears and raised more than $3,500 for NKF by collecting 70,000-some pop cans.
Ashley, a Des Moines resident, created the persona of “Kidney Man,” by sporting a mascot-like costume of a giant kidney to boost awareness of renal disease and spur others to act. Ashley lost two brothers and two uncles to polycystic kidney disease, an inherited disease in which cyst clusters develop within kidneys, causing them to fail over time.
“Get out there and get involved with something,” Ashley said in an interview. “I have this disease, so the way I look at it—I need to pay it forward. I’m going to do this until the day that I can’t do it anymore.”
M. Lee Sanders, a transplant nephrologist and board member of the group’s Iowa-Nebraska chapter, said one of NKF’s biggest legislative priorities is advocating for better protections for living kidney donors.
“People with kidney failure who are able to undergo kidney transplantation live longer and have a higher quality of life compared to remaining on dialysis. Unfortunately, there are many more people on the waiting list than kidneys available for transplant,” Sanders said.
The numbers in Iowa are staggering. Last year, 5,448 Iowans lived with kidney failure, and more than 3,000 required dialysis to survive. In 2019, the most recent year statistics are available, Iowa doctors diagnosed 899 new cases of kidney failure, but only 45 were able to obtain a transplant.
That’s why the waitlist of Americans waiting for a transplant is ever-growing: 105,929 (4,256 in Iowa) as of Thursday. Iowa surgeons performed 55 living donor transplants in 2021, a number that must surge to save the lives of those stuck in waitlist limbo. Living donors face real obstacles: 25 percent later denied or charged more for life insurance.
“Sadly, there are no current protections in place for living donors from current or future discrimination by insurance carriers,” said Sanders, a professor of internal medicine-nephrology at the University of Iowa Carver College of Medicine. “There is also no current requirement in place that mandates employers allow individuals to use Family and Medical Leave Act (FMLA) time to donate and recover from donor surgery. The Living Donor Protection Act could go a long way in correcting these deficiencies.”
The bill, first introduced by Rep. Jerry Nadler (D-N.Y.) in 2014, would remove barriers to living organ donation by prohibiting insurance companies from denying, limiting or charging higher premiums for life, disability and long-term care insurance for living donors.
The proposal has stalled in committee every session since then. NKF advocates hope to change that. The bill now has 42 co-sponsors in the U.S. Senate and 148 in the House—up from 32 and 102 last year, respectively.
In Iowa, Republican Sen. Joni Ernst and Republican Rep. Mariannette Miller-Meeks co-sponsored the law, as well as Rep. Cindy Axne, a Democrat. Republican Sen. Chuck Grassley and GOP Reps. Ashley Hinson and Randy Feenstra have yet to sign on.
“NKF volunteers met with the offices of Senator Grassley and Congresswoman Hinson during our 2022 Kidney Patient Summit [in March],” an NKF spokesman said. “Because Reps. Hinson and Feenstra are newer members, they don’t have a track-record on our issues, but Sen. Grassley has always been receptive to kidney patients’ needs. Hopefully all three will join their Iowa colleagues as LDPA cosponsors.”
NKF and a coalition of nonprofits backing the bill continue to work with committee staff to schedule a hearing this year with a goal to attach the measure to a must-pass, year-end legislative package. Predictive intelligence from Skopos Labs, Inc. pegs the bill’s chances of passing this Congress at just 4 percent, but proponents are optimistic that leadership assigned the bill to a single committee per chamber. Previous bills languished in as many as five committees.
While federal legislation has stalled, NKF is pressing forward state-by-state. Twenty-eight states have implemented versions of the Living Donor Protection Act, but not Iowa.
Of seven possible types of living donor laws, Iowa has only implemented two: a tax credit of up to $10,000 to cover the unreimbursed cost of medical expenses, lost wages, and travel related to organ donation as well as job-protected leave for state employees. Iowa does not require private-sector employers to protect the jobs of living donors, offer tax credits to employers for offering paid leave, mandate paid leave under the Family and Medical Leave Act, or protect living donors from insurance discrimination.
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