Marrow Foundation at Odds With Registry, Patients : Treatments: Life-Savers credits itself with finding donors for leukemia victims. The Red Cross-run data bank cut ties to the group.

During the past two years, the Southern California-based Life-Savers Foundation was often in the news, boasting of itself as the champion of leukemia patients in need of bone marrow transplants.

Under contract to the National Bone Marrow Donor Program, Life-Savers credited itself with recruiting nearly 100,000 volunteers and raising money to have their bone marrow tested. The program’s registry, a centralized computer data bank listing the marrow tissue type of everyone who has been tested as a potential donor, is supervised by the American Red Cross.

In recent weeks, the foundation formed by Covina physician Rudolph Brutoco has again hit the headlines--this time embroiled in controversies that have made its future uncertain.

The National Bone Marrow Donor Program and Life-Savers severed ties in June after the foundation filed a lawsuit against the family of a 20-year-old cancer patient to prevent them from taking control of $220,000 sent to Life-Savers to pay for testing potential donors for her.

In the wake of the split, Life-Savers is bidding to become a separate registry that would also match cancer patients with compatible marrow donors. But the Red Cross has filed a lawsuit that could thwart those efforts.

The Red Cross lawsuit alleges that using the names of potential donors recruited by Life-Savers to establish a separate registry would violate promises that the names would be known only to the National Bone Marrow Program’s registry. Elizabeth Quam, a spokeswoman for the registry, said it is essential to protect potential donors from being pressured to donate their bone marrow by cancer patients in desperate need of transplants.

A U.S. District Court judge in Minnesota last week issued a preliminary injunction prohibiting Life-Savers from disclosing donor information to anyone other than the national marrow registry until the suit is resolved.

The judge also ordered Life-Savers to give the registry the results of thousands of tests conducted in May and June that Life-Savers had been withholding.

Brutoco said the registry he wants to establish would be able to match potential donors with cancer patients more quickly and would be more accessible than the national registry for patients who lack health insurance or who are not being treated at an approved transplant center. But critics say establishing another registry would only confuse cancer patients, who will have to pay for searches through several computer data banks in hope of finding the one person in 20,000 whose marrow pattern matches theirs and could be used for a transplant.

“It is totally nuts to have two or more computerized registry systems to match donors,” said Prof. Art Caplan, director of the University of Minnesota’s Center for Biomedical Ethics, and a member of the national registry’s board of directors. “It is not in the patients’ interest to have to wonder if they should pay the money to search one more computer. It’s better to have all the names in one place.”

Life-Savers has also come under fire from the families of several cancer patients, including Tarzana attorney Marc Smith, who say the foundation’s role in recruiting the volunteers was limited. The families themselves, the critics say, did most of the work in the highly publicized campaigns, not the foundation.

The family of Allison Atlas, a leukemia patient from Bethesda, Md., undertook just such a campaign.

Their efforts were herculean and raised more than $1.5 million to pay for tests and added 20,000 names to the registry. But the Atlases grew disaffected with Life-Savers and wanted to continue their campaign independent of the foundation. They then sought to take control of $220,000 sent to Life-Savers in Allison Atlas’ name.

The foundation refused to give up the money and filed the lawsuit, saying that Life-Savers had assisted in the fund-raising efforts and was entitled to use some of the money.

“We did not think it was legal and we thought it violated the public trust,” to give her the money, said Life-Savers attorney Roberto Brutoco, who is Rudolph Brutoco’s brother.

But members of the registry’s board of directors said they were appalled at the foundation’s “aggressive, hostile action.”

“She was just scheduled to go get a transplant, and Life-Savers sued them right at the same time,” Caplan said. “Where are your ethics?”

Partly as a result of the lawsuit, and partly because of an ongoing dispute over whether other groups should be allowed to recruit donors, independent of Life-Savers, the registry’s board of directors voted to terminate the contract with the foundation.

Registry officials also said they had received numerous complaints from families that had been dissatisfied with the support they had received from Life-Savers.

“You do everything,” Smith said. “The person who is sick has to organize the drive, find the location for the drives, and we had to pay for everything. It is a tremendous burden on the family. The only thing Life-Savers does is call the phlebotomist” to draw the potential donor’s blood to be tested.

Richard Eiler, a Santa Barbara businessman whose family recruited more than 7,000 volunteers to be tested as potential donors when his teen-age son was battling leukemia, agreed that Life-Savers “tends to take credit for the efforts of families.”

But he said that Life-Savers is too understaffed for it to do more than set the families in the right direction, and praised the organization for at least galvanizing private citizens into action. “Most people associated with Life-Savers have tremendous intentions but are spread too thin,” Eiler said.