Transplants Force the Ill to Become Fund-Raisers : Bone marrow: The expensive search for a donor is often in vain for the seeker, who bears the burden but may save the life of someone else.

Newspapers across the country are filled with their dramatic appeals, television talk shows feature their heartbreaking stories, and stars such as Dustin Hoffman and former San Franscisco Giants pitcher Dave Dravecky have been enlisted for their fund-raising drives.

Seemingly overnight, dozens of cancer patients--five in the San Fernando Valley alone--are conducting high-profile campaigns to find donors with compatible bone marrow so they can have transplants that doctors say could provide their best chances of being cured.

The sudden demand for bone marrow donors has been generated by a surge in the number of doctors recommending “unrelated donor transplants” in the last few years and the emergence of a national registry that logs names of potential donors, medical professionals say. And it has been fueled by the realization that, the more publicity a case gets, the more likely the 20,000-to-1 odds against finding the right donor can be beaten.

The campaigns can exact a high cost--emotionally and financially--at a time when families are already stretched to the limit. But family members say they have no choice.

“This is not like AIDS. This is a case where we have found the cure. We know what the cure is, and so now we have to find a donor for my daughter,” said Alvin Atlas, of Bethesda, Md. Atlas has conducted the biggest bone marrow donor drive in the country, recruiting 21,000 potential donors on behalf of his 20-year-old daughter, Allison.

Bone marrow transplants are not new. From 1955 to 1985, 25,000 were performed. But it is only recently that doctors have begun to perform transplants using donors who are not related to the recipients.

For a successful bone marrow transplant, the donor and the recipient must have perfectly matching bone marrow. It not, the recipient can die from complications. Until 10 years ago, most doctors believed that only siblings would match closely enough for a transplant.

But, in 1979, doctors at the Fred Hutchinson Cancer Center in Seattle transplanted marrow from a lab technician there into a young leukemia patient.

Since then, doctors around the world have performed about 400 bone marrow transplants using unrelated donors, said Dr. Robert Peter Gale, a UCLA medical professor who chairs the advisory committee of the International Bone Marrow Transplant Registry, which keeps records of all bone marrow transplants performed.

If a patient receives perfectly matched marrow while still in the early stages of the disease, there is about a 50% chance of complete recovery. That success rate is high enough for many doctors to recommend it as the best treatment to cure their cancer patients.

“The number of transplants has mushroomed as it has proven to be more effective,” said Dr. Robert Decker, formerly of UCLA Medical Center. Decker is now helping to establish a bone marrow transplant center at Cedars-Sinai Medical Center.

Although at first used exclusively for leukemia patients, medical researchers have begun to use transplants as a treatment for a wider range of cancers, and there has been an even greater demand for donors.

As the operation becomes more common, cancer patients across the country--hoping to find suitable matches to save their own lives--have appealed to the public, asking friends and strangers to be tested as potential donors. The donors’ names are then added to the National Bone Marrow Donor Registry, a centralized computer data bank listing the marrow tissue type of everyone who has tested as a potential donor.

Americans have been generous in their response, said Liz Quam, assistant director of community development of the national registry. In the last six months, the registry has doubled in size as thousands of people have responded to appeals of cancer patients in their areas.

“I have never seen anything like this. We don’t have any good, hard explanation of why these stories have touched the heart of Americans, but in September we had 42,000 names, and now we are at 87,000,” Quam said.

If the registry continues to grow at the same rate, Quam said, public campaigns for donors eventually will be unnecessary, because most patients will be able to find matches. The registry now matches about 20 to 30 people a month--an increase from last September when they only matched 15 a month.

“We are building the system,” Quam said.

The registry was established two years ago, after top Navy brass expressed fears of a serious accident aboard a nuclear submarine and said they needed to quickly identify civilians who could be called on to donate bone marrow to victims of such a disaster. In addition, some cancer patients and their families had appealed to members of Congress to establish such a resource.

With a government grant of $3.4 million, the American Red Cross consolidated vital information about consenting platelet donors from 54 blood centers across the country. Typing bone marrow tissue requires much of the same information as typing blood platelets.

The registry proved to be a double-edged sword. Its promise of quickly identifying compatible marrow donors encouraged more doctors to recommend unrelated donor transplants, thus increasing the demand.

Patients, however, frequently have their hopes dashed, because the registry is still far too small to yield many matches. And, when there is no match, the families who conduct public campaigns to find one often pay a high toll for their efforts.

The initial bone-marrow-typing test costs about $75 to perform. If a person is deemed a possible match, additional tests, which cost $350, are also performed. Some volunteers will pay for their tests, but, if a volunteer can’t pay, a family will foot the bill rather than turn away a potential match. This can add up to a huge expense.

Some family members said they feel it is unfair that they must shoulder the financial burden alone, because their efforts may prove futile in their own cases but will benefit many other cancer patients across the country, both now and in the future.

“These searches do not always have results for the person who leads them,” said Dr. Rudi Brutoco, a physician who founded Life-Savers, an organization that helps cancer patients organize donor recruitment drives.

“When Adam Brock goes out and generates a lot of publicity and people are tested, those people do not have a greater chance of benefiting Adam Brock than they do of benefiting any of the other 9,000 people in the country waiting for marrow transplants,” Brutoco said. “You can ask yourself whether this is the best way to build a national resource,” Brutoco said.

Lauri Brock, the mother of 10-year-old Adam, doesn’t think so. She has organized dozens of marrow recruiting drives and many fund-raisers on behalf of her son. Thus far, her efforts have been fruitless, but the family has few other options.

“We are exhausted, and what is so depressing is that we owe Life-Savers $43,000,” she said. Still, “It is better than doing nothing.”

And Marc Smith, a Tarzana attorney whose own search ended tragically when a suitable match chose not to become a donor, said, “If I am going to go down, I am going to go down fighting.”

The other Valley residents looking for donors--Fran Arnold, Rick Bellinson and Dean Schmidt--also have taken their appeal to the public and have faced similar financial and emotional pressures.

A couple in Santa Barbara recruited 7,000 donors, but their 19-year old son still died without a donor.

“It was heartbreaking. Everyone spent so much of themselves to try to find a donor,” Quam said. “They had some satisfaction because they knew they were helping other people, but it was very discouraging.

“There are incredibly sad stories of people second-mortgaging their house and cashing in their IRAs. There is such an urgency that the families find ways to fund it.”

Many of the cancer patients feel that the government, which funds the operating costs of the marrow registry, should allocate money for marrow tissue typing so that potential donors are not turned away for lack of money.

This is a particular concern in minority communities.

Minorities now have almost no chance of finding appropriate donors because only a tiny number of blacks, Asians and Latinos have been tested as potential donors. Two people have a higher chance of having compatible marrow if they share genetic characteristics.

Most health professionals concur that the registry should reflect the ethnic diversity of the country. About 8% of the people now on the registry are ethnic minorities.

Cal Davis of Oakland lost his wife, Judy, to leukemia earlier this year after an unsuccessful search through the donor registry. Now he has created an organization dedicated to recruiting 50,000 blacks for the marrow registry.

It is a daunting task. Davis must overcome cultural barriers and financial hurdles that make enrolling donors difficult.

“You’ve got to do some convincing to let them know what you are talking about,” Davis said. “Most people don’t understand the concept of the registry, how valuable it is and how frustrating it is to have a cure but not be able to take advantage of it.

“Even getting them to take the blood test is quite often a big problem. You’ve got to get the word out that the prick of the needle is worth it, and that they can give the gift of life in their lifetime.”

HOW TO BECOME A DONOR

Signing up as a potential marrow donor is a relatively simple process. You are asked to give a small blood sample, which will be “typed” and entered into the national marrow donor registry. If and when you are identified as a potential match for a cancer patient you will be notified and asked if you are still interested in donating.

If you are, your blood will be tested further to see if your marrow is a perfect match. Prospective donors are asked to cover the $75 cost of the initial test, no one is turned down for lack of money.

Your anonymity is protected, and at no time will you be contacted by the prospective recipient. Most donors for unrelated transplants never know who received their marrow.

If you elect to donate, doctors insert a long needle into your hip and remove a small amount of bone marrow. The body regenerates that amount in a week to 10 days. The procedure is usually performed while the donor is under a general anesthetic and there is minimal risk.

For further information on becoming a marrow donor, contact the National Marrow Donor Registry (1-800-526-7809) or the Life-Savers Foundation of America (1-800-950-1050).