Banking on the gift of tissue

By Renie Schapiro

Special to the Journal Sentinel

May 1, 2005

James Wendt was a 32-year-old Milwaukee real estate appraiser when he tumbled down some house stairs and fractured his left femur. It seemed like a freak accident. Then doctors discovered a large benign tumor eating away at the bone connecting his pelvis to his knee, weakening his leg.

Gift of Tissue

Photo/Joe Koshollek

When Debi Woolard of Lake Geneva needed cervical fusion surgery last year, she received donated bone from her son, Shea Biederman, who died in 2002. His tissues helped 60 to 80 people, she said.

Photo/Dale Guldan

Jeremy Colson, a surgical technologist at Froedtert Memorial Lutheran Hospital, holds up a fibula bone segment that can be used in a transplant or grafting operation.

Photo/David Joles

When James Wendt fell down some stairs, he broke his femur. A surgeon’s use of donated human bone helped save his leg.

How To Donate

For more information about becoming a tissue donor upon death, contact the Wisconsin Coalition on Donation at (414) 805-4695 or www.donatelifewi.org/.

Orthopedic surgeon Donald Hackbarth of the Medical College of Wisconsin used donated human bone to rebuild the femur and salvage the limb. "Without that donor, I wouldn't have my leg today," Wendt said.

Hackbarth said his patients are often "astounded" when he tells them about donated bone. "What do you mean, someone donated this?" they ask.

Donations of cadaver skin, bones and other tissues, such as tendons, ligaments, corneas and heart valves, are far more common than donations of solid organs such as kidneys and hearts. Almost any patient who dies is a potential tissue donor, while few can donate organs.

Last year, Wisconsin had 194 deceased organ donors and more than 1,000 tissue donors. After tissue recovery, the body is returned to the family for traditional burial or cremation.

A single donor's tissue can go to as many as 100 recipients. This bequeathed bounty is used to treat an array of medical conditions. Besides helping some burn victims and correcting malformations, donated skin can, for example, repair vocal cords damaged by radiation treatment. Bone is used in orthopedic, oncology and dental surgery to treat bone loss and damage from tumors, trauma or infection. Tendons, cartilage and ligaments are used primarily in sports injury repairs.

Yet families are often surprised when, within hours of their loved one's death, they are asked to donate tissue.

"In many cases, a family is very familiar with solid organ donation but has no idea that tissue donation is an option," said Andy Bratz, donation coordinator for TranSource, one of three non-profit tissue-recovery agencies serving Wisconsin. About 30% of families consent, he said.

Tragedy brings a gift

Shea Biederman's family became one of them. In November 2002, Biederman's mother, Debi Woolard, was awakened by a call from Gunderson Clinic in La Crosse telling her that her 24-year-son had committed suicide. When the family arrived in La Crosse from their Lake Geneva home a few hours later, it was too late to donate his organs. But, without hesitation, the family agreed to donate his tissues.

"Whatever could help someone," said Woolard, adding that his tissues helped 60 to 80 people.

And then, in an unusual twist, she received his gift, too.

Last fall Woolard learned she needed cervical fusion surgery with donated bone. Is it possible, she asked the Wisconsin Tissue Bank that recovered her son's tissue, to get some of his bone?

After it's recovered, donated bone goes through elaborate screening, cleaning and processing that can take months or longer and involve various tissue banks. The bone may stay intact as a large graft to replace a joint or salvage a limb, but usually it is ground into powder or crafted into hundreds of types of small pieces for specific surgical uses.

The tissue bank managed to locate some of Biederman's bone. In January it was used in his mother's fusion surgery. "He's not just in my heart. He walks with me. I have a piece of him back inside me like when I carried him," said an emotional Woolard. "It's amazing."

Tissue is in demand

Fueled largely by demand for tissue for spine surgery, tissue transplantation has become a billion-dollar industry. Last year there were about a million tissue transplants in the United States, up from 350,000 a decade earlier.

Some surgeons and patients prefer donated tissue, or allograft, to the patient's own tissue, called autograft, Hackbarth said. Allograft saves the need for a second surgery, which can be more painful. Or it may be used together with, or instead of, prosthetic parts. Rejection is not a concern as it is with organ transplantation.

The total number of tissue transplants in Wisconsin is not known, but an estimated 4,000 state patients received tissue in the last year from the country's largest supplier of musculoskeletal tissue, Musculoskeletal Transplant Foundation, according to Gina Groezinger Reese, the foundation's associate regional director.

Demand for sports injury repair tissues has been growing. Demand for spinal tissues has begun to slow as more surgeons instead use a new metal device for fusions.

The incidence of disease transmission with tissue transplants is very low - as of March 2003, the federal Centers for Disease Control and Prevention had reports of 62 allograft-associated infections - but tissue safety is still a concern. In 2001 a 23-year-old Minnesota man died from a bacterial infection linked to a bone-cartilage allograft used in a knee repair. Infections and viral diseases, such as HIV and hepatitis B and C, can be transmitted if prospective donors aren't adequately screened out and the tissue effectively cleaned.

Safety step

Last fall the FDA stepped up its regulation of tissue banks to strengthen tissue safety. Tissue banks can include any group that is involved in recovery, processing, storage and/or distribution of donated tissue.

As tissue transplantation has become more common and sophisticated, the field has attracted for-profit companies.

Federal law prohibits selling tissue, but "service fees" can be charged, and they are substantial. A single donor on average generates $30,000 to $50,000 in fees, and some yield more than $200,000, depending on how their tissue is used.

Fees to hospitals for a whole femur, for example, can top $5,000 and bone pieces range from several hundred to several thousand dollars. These costs are passed on to the patients.

"Some people don't like that they are giving a gift and at some point people are making money out of it," said Christina Strong, a New Jersey-based attorney and national consultant to tissue banks.

Prospective donors in Wisconsin now get an informed consent form that tells them that both non-profit and for-profit agencies are involved with their gift.

However, a Wisconsin family expressed concern to their state representative, Alvin Ott, that when they donated tissue a few years ago, they were unaware of the commercial involvement. Ott is now drafting a bill that would allow donors to indicate on the consent form that they want their gift directed only to non-profit agencies.

The bill, modeled after one enacted in California, also would give donors a voice in another controversial area: how the donation is used.

"People are making a donation for life-enhancing, if not life-saving, purposes and then they hear rumors later that the (skin) donation was used for cosmetic purposes like penile enlargement," Strong said.

Many uses

Skin is used for burn victims and for a range of reconstructive uses, including mastectomies, hernia repairs and bladder reconstruction to treat incontinence. More controversial are the vanity cosmetic uses such as puffing up lips or enlarging penises.

The three recovery agencies serving Wisconsin all report that their contracts with processors who use the skin they recover specify either that the skin will be used exclusively for medical uses or those needs will have priority.

The tissue banking agencies are eager to assure donor families that they are good stewards of the tissue gift. And donor families and recipients such as Wendt and Woolard are their most active allies in promoting donation.

"Not a day goes by that I don't think about the gift from that donor," Wendt said. "I want to let people know what a great gift it is."

Renie Schapiro is co-editor of "Transplanting Human Tissue: Ethics, Policy and Practice" (Oxford University Press).

This article posted June 6, 2005.