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Calculating The Value Of Human Tissue Donation

Chris Truitt holds a photo of his daughter, Alyssa, who died when she was 2, at his home in De Forest Wis. After donating her organs and tissues, he decided on a career change that made him rethink tissue donation.
Narayan Mahon for NPR
Chris Truitt holds a photo of his daughter, Alyssa, who died when she was 2, at his home in De Forest Wis. After donating her organs and tissues, he decided on a career change that made him rethink tissue donation.

Part 1 of a four-part series

The story of how Chris Truitt went from being a tissue industry insider to an industry skeptic starts with a family tragedy.

In 1999, his 2-year-old daughter, Alyssa, died of a sudden health complication. Truitt and his wife, Holly, donated their daughter's organs and tissue, which saved the life of another young girl, Kaylin Arrowood.

A family photo of Alyssa Truitt.
/ Courtesy of the Truitt family
Courtesy of the Truitt family
A family photo of Alyssa Truitt.

The Truitts became close friends with Kaylin's family and then advocates together, telling others to donate. That led to a career change for Truitt, who took a job on the tissue side of the business for the organ bank in Madison, Wis., where he lived.

Most people are familiar with organ donation, especially as it's portrayed on television or in movies: There's the image of an organ getting thrown into a cooler, packed with dry ice. Then there's the race against time as it's flown off to some other hospital where a patient waits for lifesaving surgery.

"Tissue donation was totally different, and I knew it going into it," says Truitt, who worked in the tissue-donation industry for several years before quitting. "We're recovering skin, bones, tendons, heart valves, veins, those sorts of things."

Tissue is anything that's not a live organ and can be recovered from a dead body. It can then be turned into scores of medical products. Every year, 1.5 million of these products are given to American patients.

A tendon from a cadaver can be used to repair a torn ACL; veins are used in heart bypass operations. Dental implants can be made from ground-up human bone, turned into a paste. Bone also gets turned into screws and plates that look like something found in hardware stores. Surgeons can use them to repair a broken leg.

"When you die, you don't need your skin anymore. But that 6-year-old burn victim, lying in the hospital, could really use it," says Truitt. "Your heart valves can go to a father of four who's having some serious heart issues and without those valves could die. By giving what you no longer need, you're still helping and in a way, you're kind of still living on."

Still, while that may sound like he's endorsing tissue donation, this one-time industry insider no longer feels that way — at least, for now.

"I've struggled with that decision for many years now, and the answer is no: I will not donate my tissues," he says. "Tissue donation, at the base level, at what I described of helping somebody else live a better life is a phenomenal thing. But unfortunately, just as easy as your tissues can go to something like that, they can also go to penile implants, for example."

The human tissue industry is full of contradictions like that. Tissue can save or better someone's life, but sometimes it will go to plump up lips and smooth wrinkles.

It starts with an act of generosity. Families, like the Truitts, donate bodies. But that altruism can turn to profit. Tissue companies — by the industry's own estimates — make more than $1 billion a year.

It's estimated that the tissue off of a single body can generate revenues of $80,000 or more.

Tissue grafts help 50 times more people than the number who receive organ donations, and yet it's a little known and lightly regulated business.

For many people, the first time they think about tissue donation is when they get a phone call from someone at a tissue bank after a loved one has died. More than 101 million Americans have signed up to be organ and tissue donors —often when they get or renew a driver's license. That's a legally binding designation in every state, even though people who have signed up often don't know how tissue donation works or how tissue is used.

After someone dies, a representative of a tissue bank will first call a family member to go through a screening questionnaire to make sure the person didn't die of a disease that would rule out using that tissue. Often family members don't know that a loved one consented to donate tissue. Tissue banks will decline to take a body if family members raise objections. In the U.S., about 30,000 bodies are donated every year.

Tissue recovery has to start about 24 hours after a person dies. Then the body is turned over to people who work on tissue-procurement teams, like Truitt.

A Salvager's Job

Truitt was hired in 2000 onto one of the teams that, at a moment's notice, would jump onto a small plane, or into an SUV, and go where a dead body had just been donated.

He would go with hammers and metal wedges to pop out bones. He carried a special tool for cutting skin, called a dermatone.

"It's kind of like, to describe it very crudely, it's kind of a cross between a cheese grater and an electric razor," he says.

It takes a surgeon to remove an organ. If a heart, lung or kidney gets damaged, it can't be transplanted. But taking tissue is more of a salvage job.

Truitt received on-the-job training from his co-workers at Allograft Resources of Wisconsin.

"It's actually a very brutal procedure and there really isn't a way to do it to make it less brutal. I mean we had to pull the bones out. That's all there is to it," he says. "Pulling out arm bones or pulling out leg bones. We're cutting the chest open to pull the heart out to get at the valves. We're peeling veins off the inside of skin."

Tissue recovery teams pride themselves on their ability to take skin and bones and then reconstruct a body so that no one can tell at an open-coffin funeral. A skilled team can shave a layer of skin so thin that the body looks like it's just got a mild sunburn. Or take out bones, but replace them with wood or plastic pipe and then stitch up the surrounding skin. A long-sleeve shirt and pants will hide the stitches.

Truitt says he loved his job and the chance to do good work.

A Golden Incentive

"When things first started out, Allograft was a not-for-profit. It was very altruistic. It was a very, very noble thing to do," he says. "So folks that wanted to give back, that wanted to be part of that incredible process were the ones that joined the teams."

Instead of being stewards of the gift, instead of recovering what the family wanted and treating each donor with the ultimate in respect, the company was actually looking at each donor as a profit machine, as nothing more than raw resources, and it was our job to take as much of those resources as we possibly could.

But the small nonprofit tissue bank had problems. It was cited by the federal Food and Drug Administration for sloppy record keeping and casual safety procedures.

Then, one of the tissue bank's biggest customers — RTI Biologics — bought it. The for-profit tissue company emphasized better training.

But Truitt says there was also a bigger emphasis on profit-making, which led to the start of a bizarre competition.

"It was called the Golden Dermatone Award for getting as much skin as you could off a donor," Truitt says.

He explains that a representative of LifeCell, a company that bought skin, would show up at staff meetings and hand out certificates for the technician who got the most square feet of skin off one donor.

At first, Truitt, tried to win these contests.

"I was actually pretty into it at first. I thought it was a pretty incredible thing, until I started thinking a little bit more about ... what we were doing," he says. "That's when I just couldn't do that. It was just wrong."

After all, Truitt had once been a donor dad, himself; that had once been his daughter on the cutting table. He says he became horrified by the contests and tried to get the tissue bank to treat donated bodies with more respect.

"Instead of being stewards of the gift, instead of recovering what the family wanted and treating each donor with the ultimate in respect, the company was actually looking at each donor as a profit machine, as nothing more than raw resources, and it was our job to take as much of those resources as we possibly could," he says.

In 2005, after five years as a tissue-procurement technician, Truitt says, he was forced out of his job.

RTI declined to comment on Truitt's story. But LifeCell sent NPR a statement. The company says it awarded the Golden Dermatome to tissue banks, but that this was not a contest; it was part of a training effort to improve the skills of tissue bank technicians. The more usable skin they recovered, the more patients the company could help.

"The plaques were discontinued as recovery skills with all of our Tissue Banks improved," the statement says.

Truitt says he has struggled financially since leaving his old job, where he made close to six figures. Today, he manages a bank branch. He has also self-published a book called The Dark Side of Tissue Donation.

Truitt says he doesn't want to stop tissue donation, he wants to fix it. For example, he says, tissue banks need to be more open about what it means to donate a loved one's body.

Right now, a caller from the tissue bank will probably explain that donated skin can help save the life of a burn victim, but the caller is unlikely to say that the skin might also go to someone's plastic surgery. Or that someone else will make money from a donated body.

Studying Donation Calls

Laura Siminoff, a professor at Virginia Commonwealth University, and her colleagues have listened to more than 1,400 phone calls that representatives from tissue banks have made to potential donors' families. The legal permission to donate is usually given over the phone so the calls are recorded.

She argues that tissue donation may be more important than organ donation because more people receive tissue grafts. She studies these calls because she wants to understand why people say yes — or no — when asked to donate.

People who know more about tissue donation are more likely to donate, she says. But for most people, the person calling from the tissue bank is likely the primary source of information about tissue donation.

Siminoff's study found that only 29 percent of the time does the caller say the skin may go for cosmetic surgery.

Only 18 percent of the time are people told the tissue might go to a for-profit company only. Even though in another study Siminoff found that 73 percent of donors felt it was "not acceptable for donated tissue to be bought and sold, for any purpose."

Siminoff also says that families are more likely to regret not donating a loved one's body than they are to have doubts after they have donated. The most common reason people say they donate is to make something positive come from death.

This story was co-reported with the International Consortium of Investigative Journalists, a project of the Center for Public Integrity. Radio story produced by Sandra Bartlett; research by Barbara Van Woerkom.

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

Joseph Shapiro is a NPR News Investigations correspondent.
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