Donald Bateman's family felt good about the lives he saved after he died in May 2003.
They were horrified by what they learned later.
The Tempe man's family agreed to donate his organs for transplant. But then they found out his body had been stripped of bones and other tissues, which were sold to an out-of-state processing organization.
Legislation aimed at preventing what happened to Bateman cleared the Senate Health Committee unanimously Thursday after testimony from Bateman's daughter, Laurie Sterbenz of Chandler.
“What this has been to my family is it has devastated us physically and emotionally,” Sterbenz said. “When you are giving the greatest gift you can give and then feel betrayed and violated like we did . . . We won't ever get any closure from this. My goal is to not have this happen to another Arizona family.”
The bill, sponsored by Rep. Warde Nichols, R-Chandler, would require organ procurement organizations to give written copies of their paperwork to the person authorizing the organ donation, typically a surviving spouse or other family member. That was not done when Bateman's organs and tissues were procured.
The measure, which has passed the House and now goes to the full Senate, also would require the person authorizing the donation to initial boxes consenting to the removal of individual organs and tissues. In Bateman's case, his wife signed the authorization form for organ donation, and the boxes for the tissue that was taken were marked by someone else, Sterbenz said.
Representatives of Donor Network of Arizona, the agency that procured Bateman's organs and tissues, supported the Nichols bill.
Sara Pace Jones of Donor Network said she agrees with the intent of the legislation, which is to ensure families are fully informed before authorizing a donation. That is something Donor Network attempts to achieve through its own practices, but passage of the law would ensure uniform standards, she said.
“We in no way hide what was recovered from the donor family,” Jones said.
Confidentiality laws prohibit her from speaking about Bateman's case, she said.
Bateman was 63 and in apparent good health when he collapsed after jogging in May 2003. He was taken St. Joseph's Hospital and Medical Center in Phoenix, where he was declared brain dead.
Federal rules require hospitals to notify a designated organ procurement organization whenever a patient dies or is facing imminent death. In Arizona, the designated procurement organization is Donor Network of Arizona. The intent of those rules is to increase the donations of life-saving organs that can be transplanted.
Sterbenz said that when her family was approached by a Donor Network representative, all of the discussion was about organs like the kidneys, liver and heart. Bones, veins and other tissues were not discussed, she said.
The family agreed to donate the organs, and has no regrets about that, Sterbenz said. Two people received Bateman's kidneys, the only organs suitable for transplant.
The family did not learn that the bones and other tissues were taken until after the body was returned to the funeral home for cremation, she said. In the months that followed, Sterbenz learned that her father's bones had been sold by Donor Network to the Musculoskeletal Transplant Foundation.
While both Donor Network and the foundation are nonprofit, the foundation has contracts to provide human bones to Osteotech Inc., a for-profit New Jersey company that grinds them to dust to make bone putties and other skeletal implants used in medical and dental surgeries.
Donor Network reported revenue of $12.5 million last year, according to Jones. After expenses, its net revenue was about $329,000, she said.
Over the last two years, Donor Network has lost about $220,000 in its tissue procurement segment, Jones said.
“It's not something we're out to make money on or to dupe people into doing,” Jones said.
The musculoskeletal foundation is the largest tissue organization in the country, according to its Web site. It reported $179 million in revenue in 2001, the last year for which figures were available. Osteotech reported revenue of $94.4 million in 2003.
Jones said forms created by Donor Network as model consent documents do have check-off boxes for individual organs and tissues, but that different hospitals use different forms. Families also are told tissues may ultimately go to nonprofit or for-profit entities, Jones said.
“We don't want to recover anything from a person who hasn't given their own consent or whose family hasn't given consent because we know that people won't donate in the future and we won't be able to save lives,” Jones said.
Donor Network does not provide copies of authorization forms to family members unless they are requested, Jones said.