Calculating The Value Of Human Tissue Donation

Jul 17, 2012
Originally published on July 18, 2012 7:11 pm

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.

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."

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 2014 NPR. To see more, visit http://www.npr.org/.

Transcript

ROBERT SIEGEL, HOST:

From NPR News, this ALL THINGS CONSIDERED. I'm Robert Siegel.

AUDIE CORNISH, HOST:

And I'm Audie Cornish.

Today, we begin a four-part series that examines a fast-growing industry, one that makes medical products from tissue - skin, bones taken from human corpses. It's a billion-dollar business that begins with an act of generosity - willingness to donate one's body, for free, after death. Companies recycle the tissue for skin grafts, heart bypass operations and spinal fusion. But they may also use it for cosmetic implants or other plastic surgery. Often, people who donate have no knowledge or control over how their tissue will be used.

A warning here - descriptions in this story may be disturbing to some listeners. Here's NPR's Joe Shapiro.

JOE SHAPIRO, BYLINE: First, there's a difference between organ donation and tissue donation. We've got an image of organ donation from TV and movies.

(SOUNDBITE OF MOVIE, "JOHN Q")

UNIDENTIFIED MAN: What do we have?

UNIDENTIFIED WOMAN #1: A female donor...

UNIDENTIFIED MAN: Female donor.

UNIDENTIFIED WOMAN #1: ...26 years old...

SHAPIRO: Like the movie with Denzel Washington, "John Q."

(SOUNDBITE OF MOVIE, "JOHN Q")

UNIDENTIFIED WOMAN #1: Liver, kidneys - usable.

UNIDENTIFIED MAN #1: Liver and kidneys are both usable. Lungs?

UNIDENTIFIED MAN #2: OK.

UNIDENTIFIED MAN #1: The lungs are OK. Heart?

UNIDENTIFIED MAN #2: Heart is good.

UNIDENTIFIED MAN #1: Heart is good.

SHAPIRO: The organ gets thrown into a cooler. It's 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 a lifesaving surgery. It's dramatic.

(SOUNDBITE OF MOVIE, "JOHN Q")

UNIDENTIFIED WOMAN #2: John, it's a miracle. Thank (unintelligible)

(SOUNDBITE OF A HELICOPTER)

UNIDENTIFIED MAN #1: The heart is here. I repeat, the heart for little Mike Archibald has arrived. What an unbelievable ending to this incredible, tumultuous day.

(SOUNDBITE OF CHEERING)

SHAPIRO: And then, there's tissue donation.

CHRIS TRUITT: Tissue donation was totally different and I knew it going into it.

SHAPIRO: That's Chris Truitt. He worked in the tissue-donation industry for several years and then quit.

TRUITT: We're recovering skin, bones, tendons, heart valves, veins, those sorts of things.

SHAPIRO: Tissue is anything that's not a live organ. Tissue is recovered from a dead body and it's turned into scores of medical products.

TRUITT: 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. 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 you're - in a way, you're kind of still living on.

SHAPIRO: So that sounds like an endorsement from Truitt for all of us to donate tissue. But that's not how this one-time industry insider feels - at least not now.

TRUITT: I've struggled with that decision for many years now and the answer is no, I will not donate my tissues. 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.

SHAPIRO: The human tissue industry is full of contradictions like that. Tissue can save or better someone's life or sometimes it will go to plump up lips and smooth wrinkles. It starts with an act of generosity. Families donate bodies, then tissue companies, by the industry's own estimates, make more than $1 billion a year. Tissue grafts help more people, 50 times more the number who get organ donations, and yet it's a little known and lightly regulated business.

(SOUNDBITE OF RINGING PHONE)

SHAPIRO: For many people, the first time they think about tissue donation is when they get a phone call, like this one.

(SOUNDBITE OF RINGING PHONE)

SHAPIRO: Randy Eisenbeis of Lodi, California, died suddenly last year. It was a little after midnight when the phone calls started coming to his daughter, Mandy.

MANDY: Hello.

UNIDENTIFIED WOMAN #3: Hi, may I speak with Mandy, please?

MANDY: This is her.

SHAPIRO: There's 90 seconds of fumbling conversation until the caller from the tissue bank explains what she really wants: for the family to donate Randy Eisenbeis's body so his tissues can be recovered for transplant. Randy Eisenbeis was 57 with no history of health problems. That made him a good candidate for tissue donation.

Mandy liked the idea of donating her father's tissue. She thought it would honor his generous spirit. He was the kind of guy who'd leave work to come change her flat tire. He checked in on his elderly parents every day, even when his work shift ended at four in the morning?

MANDY: Now, is there like a deadline that you need? Just because right now, I'm just kind of going through - I'm trying to just get my wits about me still. Would it be possible to do it in the morning.

SHAPIRO: There is some urgency. Tissue recovery has to start about 24 hours after a person dies. In the U.S., about 30,000 bodies are donated every year.

UNIDENTIFIED WOMAN #3: And this gift is not going to interfere with any of your viewing plans. And if the arm bone is donated, again, that requires long sleeves for viewing. The body is carefully reconstructed after recovery, but it does require long sleeves for a viewing.

SHAPIRO: The legal permission to donate is given usually over the phone, which is why these calls were recorded. Then the body is turned over to people who work on tissue procurement teams, like Christ Truitt. The story of how he went from being a tissue industry insider to an industry skeptic starts with a family tragedy.

(SOUNDBITE OF FLIPPING PAPER)

SHAPIRO: In the living room of the Truitt house, near Madison, Wisconsin, there's a poster-sized, framed photograph of a young girl in pigtails. She's laughing with a big, impish grin.

TRUITT: That's her, little Alyssa. She's our little angel now.

SHAPIRO: Alyssa Truitt was just two when she died of a sudden health complication. Truitt and his wife donated their daughter's organs. Those organs saved the life of another young girl. And after Truitt got to know that girl, he decided to change careers. He went to work at that organ and tissue bank.

Truitt was hired under 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. And this is where we need to warn you about the language you're about to hear. Some of the descriptions are graphic.

Truitt would go with hammers and metal wedges to pop out bones. And he'd carry a special tool for cutting skin.

TRUITT: It's called a dermatome. It's kind of like - to describe it very crudely, it's kind of a cross between a cheese grater and an electric razor.

SHAPIRO: It takes a surgeon to remove an organ. If a heart, lungs, kidney gets damaged, it can't be transplanted. But taking tissue is more of a salvage job. Truitt got on-the-job training from his co-workers at Allograft Resources of Wisconsin.

TRUITT: 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. 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.

SHAPIRO: Tissue recovery teams, like Truitt's, pride themselves on their ability to take skin and bones and then reconstruct a body so that no one can tell at an open casket 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 loved his job at Allograft Resources and the chance to do good work.

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

SHAPIRO: But the small nonprofit tissue bank had problems. It had been 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 another change: a bigger emphasis on profit-making. And he says that led to the start of a bizarre competition.

TRUITT: It was called the Golden Dermatome Award for getting as much skin as you could off a donor.

SHAPIRO: Truitt says 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 of one donor. At first, Truitt, tried to win these contests.

TRUITT: 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 exactly we were doing. That's just - that's when I couldn't do that. It was just wrong.

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

TRUITT: 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.

SHAPIRO: Truitt started clashing with his bosses. 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 us a statement. The company says it did award plaques, the Golden Dermatome Award, 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 statement says, the plaques were discontinued as recovery skills with all of our tissue banks improved.

JOSEPH SHAPIRO, BYLINE: Chris Truitt struggled financially since leaving his old job. He'd been making close to six figures. Today, he manages a bank branch. He has self-published a book called "The Dark Side of Tissue Donation." Truitt doesn't want to stop tissue donation. He says he wants to fix it. For starters, he says tissue banks need to be more open about what it means to donate a loved one's body.

(SOUNDBITE OF BEEP)

SHAPIRO: This is one of the calls we got from that family, the Eisenbeis family in California.

UNIDENTIFIED WOMAN 1: Oh, my goodness.

UNIDENTIFIED WOMAN 2: I know.

UNIDENTIFIED WOMAN 1: I'm just so sorry for the family.

UNIDENTIFIED WOMAN 2: You know, everything happened around here and it was such a nightmare the way that it happened.

LAURA SIMINOFF: So your mother's died and maybe it was a lengthy illness. Maybe you're exhausted. You're upset.

SHAPIRO: Laura Siminoff and her colleagues listened to over 1,400 phone calls. She's a professor at Virginia Commonwealth University. Siminoff argues that tissue donation may be more important than organ donation because so many more of us will get tissue grafts. She studies these calls because she wants to understand why people say yes or no when asked to donate.

SIMINOFF: You get a phone call and you say, hello, and a stranger gets on the phone and starts talking to you about, you know, I'm from so-and-so, a tissue bank, and now is asking about this and, you know, people are like, what? What are you talking about? What are you asking me about?

SHAPIRO: It turns out that people who know more about tissue donation are more likely to donate, but for most people, the person calling from the tissue bank turns out to be the primary source of information about tissue donation.

And Siminoff's study found that only 29 percent of the time does the caller say the skin may just 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 thought it was not acceptable for donated tissue to be bought and sold for any purpose.

And that brings us back to Mandy Eisenbeis who, last year, agreed to donate the body of her father Randy.

MANDY EISENBEIS: There was nothing extravagant about my dad. A pair of cowboy boots and a hat and he was good to go.

SHAPIRO: His Mazda pickup truck with 240,000 miles on it was the most valuable thing he left to his family. Randy Eisenbeis didn't know it, but he was worth more in death than he was worth alive. It's estimated that the tissue off of one body can generate revenues of $80,000 or more.

Joseph Shapiro, NPR News.

CORNISH: This story and our entire series on human tissue donation was co-reported with the International Consortium of Investigative Journalists, a project of the Center for Public Integrity. Transcript provided by NPR, Copyright NPR.