Organ Donation: A New Heart, A New Mission

Amway Cofounder Wants More People To Sign Up As Donors -- With A Little Financial Carrot As A Boost

By Patricia Anstett

Free Press Medical Writer

Grand Rapids -- A salesman to the core, 76-year-old Amway cofounder Rich DeVos has a new job and a new mission.

He's behind the push -- gaining ground in Congress and organ transplant circles -- to give a financial incentive or tax break to people who agree to donate their organs when they die.

Proposals include a lifetime exemption from paying income taxes for anyone who signs a witnessed donor card and a one-time financial contribution paid for by Medicare and other insurance benefits. Experts project annual savings of $1 billion for kidney dialysis and other medical care that transplant recipients no longer would need.

Donor cards with signatures of witnesses would be considered legally binding, compared with donor signatures on driver's licenses.

DeVos -- who had a heart transplant five years ago -- favors an insurance benefit of $10,000, though he endorses other incentives to end organ shortages, a problem that has persisted for 30 years. He explained it this way: "We will give you $10,000 to whomever you designate: Your parents, a spouse, whomever, to pay the hospital, medical or funeral bill.

"It's a spiff, I call it, a little inducement," said DeVos, who plans to make several yet-to-be-scheduled speeches on the topic. He is the new chairman of the speakers bureau for the United Network for Organ Sharing, a leading nationwide organ donation agency.

With 7,000 deaths among the 70,000 Americans waiting last year for an organ transplant -- five times the number of deaths in 1980 -- support for financial incentives or some other reward is growing among some groups.

And the problem is especially crucial among people on kidney transplant lists, who often wait as many as five years for a donor.

In June, UNOS voted to support federal legislation allowing studies that would explore the impact of financial incentives on organ donation. The American Medical Association's House of Delegates and the American Society of Transplant Surgeons also have approved a similar plan to begin studies.

But a 1984 federal law prohibits financial incentives for organ transplants. Many donor families, transplant groups and others find the incentive idea repugnant.

Last month, the National Kidney Foundation's board of directors unanimously opposed any effort to legalize payment for organs.

"Money is an insult to donor families," said Ellen Gottman-Kulik, chairwoman of the kidney foundation's family council.

DeVos remains hopeful. "We're trying to sell our idea to more people, to break down the resistance that has built up.

"I think this can happen in the next year or two," he said in October. "All we have to do is get a bill passed in Washington."

DeVos and Dr. Luis Tomatis, a heart surgeon who works as his chief aide on health issues, have visited Washington, D.C., to drum up support for bills introduced by U.S. Sen. Bill Frist, R-Tenn., a heart transplant surgeon, and U.S. Rep. James Greenwood, R-Pa., to increase the supply of donor organs through pilot studies or other measures.

"Some people think of this as selling organs, so we need to move the discussion to, 'I want to give my organ,' " DeVos said.

"I ask: How do you get people to take an action?

"You say, here's a little prize for you."

Serious Heart Trouble

The financial incentive idea befits a man who made his money selling vitamins and personal care items. His Ada-based Amway Corp., cofounded with his high school friend Jay Van Andel, is an international company with $4.1 billion in revenue in 2001.

DeVos is America's 113th richest man, with a net worth of $1.7 billion. He owns the Orlando Magic National Basketball Association team, a job he enjoys.

But DeVos lives with heart problems, which run in his family. His father died at 59 of a heart attack. His mother and several brothers also died of heart failure, he said.

Fifteen years ago, he found himself feeling unsteady on his feet. Then he found himself bumping into doorways or veering to the left when he moved. Eventually doctors told him he had experienced a mini-stroke, he recalls in "Hope from My Heart, Ten Lessons for Life," a book he published two years ago.

DeVos met the challenge by exercising more and watching his diet. He already had stopped smoking, a pack-a-day habit he had for 30 years.

It wasn't enough. From the late 1980s to 1992, he underwent six-way heart bypass surgery, had a stroke and then a heart attack. The events left his heart so weak that he measured his life in steps.

"I couldn't take 50 steps without stopping," he recalled, speaking of his health before the transplant.

"I couldn't go to the theater because it might mean steps. I had to be careful about going out to eat because steps would be involved.

"For five years, I was pretty well isolated. I resigned from the company. My son took over the presidency. I napped."

By 1997, DeVos was ready for a heart transplant, but no U.S. center would accept him because of his age, bad heart health history and rare AB-positive blood type.

He holed up for five months in London's Four Seasons Hotel, near Harefield Hospital. His surgeon, Sir Magdi Yacoub, agreed to operate on him if the right heart could be found.

DeVos was fortunate to get the heart of a 39-year-old woman deemed unsuitable for other British recipients because of her blood type -- AB-positive -- and the heart's large right side, he said. The woman gave up her heart as part of a heart-lung transplant she received.

"I needed a strong right-sided heart, because of previous heart attacks on my right side," DeVos said. "A regular heart in me wouldn't have worked. It took a strong right-sided heart."

The British tabloids cried payoff, but DeVos said none occurred or was needed.

A nasty infection slowed DeVos' recovery. Doctors couldn't close his chest properly for months. "For two years, I had two separate chests," he said. "No bone, just muscle holding the two sides together."

On The Mend

Five years later, DeVos is fit, talkative and upbeat. He's emerged from semiretirement to dabble in numerous projects. "I changed my exercise and diet, and I changed my parents," he said with a wink.

These days, his cholesterol is below 200, an acceptable level, and he walks a mile daily outside or on a treadmill. He eats no red meat and takes his company's nutritional supplements. He no longer naps.

The stroke left him with left-side weakness. He has some unsteadiness, and tingling and numbness in his feet, a problem related to diabetes called neuropathy.

It isn't his nature to complain. "Why talk about it?" he said. "There's nothing you can do about it. Some days, my legs and feet hurt, some days they don't. There are a lot of things that hurt in life.

"Some transplants don't work well but mine has worked perfectly, better than I could have hoped, praise the Lord," DeVos said.

"It's given me life -- a whole new life. Now I want to sell America on the idea of organ donation."

He pauses then adds, without missing a beat: "I have a heart for it."

Contact Patricia Anstett at 313-222-5021 or anstett@freepress.com.

Copyright © 2002 Detroit Free Press.

This article posted December 28, 2002.