PERSONAL HEALTH : Transplants of Marrow: Strangers Answer Call

On a Sunday morning at Temple Judea in Tarzana, Nancy Landis has arrived for a blood test to help a woman, a stranger whom she saw on television.

The woman needs a bone marrow transplant. And although Landis, 20, doesn’t completely understand what’s entailed in becoming a donor, she is certain that Temple Judea is where she should be this morning.

“I saw this lady on the news,” says Landis. A small bandage covers the crook of her right arm, where two tablespoons of blood have been drawn. As with other donors, the blood sample taken from Landis will be used only for testing to see if her tissue is a match for the woman or another patient needing a transplant.

“She has a daughter my age,” Landis says. “I saw how she was struggling to live. I want to help that lady.”

The blood drive at Temple Judea is for Fran Arnold, a 48-year-old Tarzana mother of three who is dying of leukemia. But the scene could have been anywhere.

Across town at the West Angeles Church of God in Christ on Crenshaw Boulevard, friends of William Rall, who is dying of leukemia at age 11, register potential donors for a preliminary blood test to see if their marrow might match his.

In Long View, Tex., blood drives are held almost weekly to search for a match for two residents who need bone marrow transplants.

In New York City, the fire and police departments compete to see who can register the most employees as potential donors.

On the TV talk show “AM Los Angeles,” co-hosts Tawny Little and Steve Edwards give blood samples that will be tested and entered in a registry. In Hollywood, actor Dustin Hoffman pleads for a donor for a student whose time is running short. In Oregon, an archivist searches for a family’s distant relatives to find someone who could donate marrow for two sisters with a rare, fatal blood disease.

There are appeals for donors--everywhere, every day.

And in a growing number of cases, the appeals are not in vain, says Liz Quam, of the National Marrow Donor Program in St. Paul, Minn., a federal program founded to match transplant patients with potential donors.

For the first time in its three-year history, the registry has enough donors to offer a terminally ill patient the slim chance of receiving a transplant from a stranger when no suitable family member can be found.

A decade ago, bone marrow transplants were performed only as a last resort to save cancer patients. (Chemotherapy and radiation were--and still are--the standard treatments.) But medical advances have transformed the risky procedure into a reasonable option for children and adults with leukemia, lymphoma, aplastic anemia, sickle cell anemia, radiation poisoning and dozens of other rare, fatal blood diseases.

And the advances have come at a time when public enthusiasm for donation is on the rise, Quam said. While blood donation is a somewhat anonymous procedure--a donor doesn’t know who the blood will go to and for what specific purpose--bone marrow donors can know the identity of the recipients and invariably say they feel as though they are saving someone’s life.

Energized by the turnout of donors nationwide, patients with about 50 types of fatal blood diseases and their doctors are scrambling for transplants as their best shot for a cure.

“Two years ago, unless you had a family member that matched you, there was no hope,” Quam said. “Now, because we have started to envision a large enough pool of donors to meet all needs, it has become a real hope.”

Last October, the registry listed 42,000 potential donors and was criticized as being too small to be viable.

But, due to the explosion of public awareness and aggressive campaigns for donors, the number has soared in six months to almost 100,000, surprising registry officials who had somewhat pessimistically projected they would reach 100,000 by January, 1991. The increase in donors improves the likelihood that a recipient will find the one person in 20,000 who has matching bone marrow.

Concurrently, the number of bone marrow transplants nationwide has jumped from about 15 transplants a month last fall to about 30 a month now, Quam said.

Success depends heavily on locating the best possible donor, however, and because of the complexity of bone marrow itself, this is a daunting task.

Bone marrow is a red fluid, the consistency of jelly, that circulates inside bones and manufactures red blood cells. Unlike blood, of which there are four basic types, marrow contains so many components that pairing donor and recipient is like trying to find the mates among 20,000 shoes scattered from California to Maine.

In the same laboratory process used for paternity testing, technicians identify six particular components in blood called human leukocyte antigens, which can be found in many combinations. Ideally, all six of the antigens from donor and recipient should match.

Transplants can be performed if at least four match, but the chances of success are reduced. Antigens are linked to race and ethnicity to some extent, and blacks, Latinos, Asians, Native Americans and Jews are particularly under-represented in the donor registry, Quam said.

“If you don’t have those components matched, the body recognizes that the marrow is foreign and will reject it,” Quam said.

Most potential recipients would gladly face the odds of even a less-than-perfect match.

According to the national registry, about 9,000 people each year require bone marrow transplants for survival. About 30% will find a donor among family members. The other 70% must search for an unrelated donor. Fewer than one-quarter will find a match now through the registry.

“We’ve had about 1,000 searches going on in the last few weeks, and the number grows steadily,” Quam says. “And there are going to be patients who have such a rare (tissue) type that we can’t find a donor for them.”

The registry needs at least 250,000 donors to meet all requests.

Anissa Ayala of Walnut Grove has not found a donor. Last year, the teen-ager’s parents conceived a child hoping that the sibling might be a donor for Anissa, and their plight has been highly publicized. Tests show that the baby girl, born last week, is a suitable match. But the parents, who have stated that the newborn will be loved for herself as well as for her bone marrow, have been criticized for their decision.

Such stories of desperation have triggered the national registry’s emerging success, Quam says.

“I’m a very reserved person, but when your kid’s life is on the line, you do really strange things,” says Tony Templeman of Artesia, whose son received a bone marrow transplant last year from an unrelated donor. “I decided I wanted to do whatever I could and not have any regrets.”

The Templeman family sponsored testing for 1,500 people over five nights last May without finding a match for Phil, 26, who had leukemia.

“But that was not a disappointment for us,” Templeman says, “because we felt we were helping someone else.”

The registry located a donor for Phil a few months later.

“When there is a donor, you’re rescuing the family as much as the patient,” says Susan Rafkin of the Life-Savers Foundation, a Covina-based nonprofit group founded to boost the donor pool through recruitment and fund raising. “There is a lot of turmoil. You have to go public if you want to get the word out.”

Quam believes the despair will end. Few altruistic campaigns have caught the nation’s fancy as bone marrow donations.

Larry Lundeen, 39, an insurance agent from San Diego, calls his experience donating bone marrow “the best thing that happened to me.”

Lundeen, a longtime American Red Cross blood donor, entered the registry in March, 1988, and was told: “Thanks, but don’t expect a call real soon.”

Three months later he was contacted as possible match for a 43-year-old Jackson, Mich., man with leukemia.

“I’ll always remember it in terms of feeling like a lottery winner,” says Lundeen, whose donated marrow was flown to Michigan. “It’s a chosen feeling. In the back of your mind, you wonder if you would do it if called upon. You get to be a hero.”

Donor recruitment specialists try to educate potential donors about the process before the first blood test. But about 10% of potential donors who are contacted as a match decline to continue the process, Quam said. Some have legitimate reasons, such as pregnancy. Some back out simply because they did not understand what was involved. They are not legally obligated to go through with the process.

More interesting, Quam says, is why people donate. The national registry is conducting research to understand what motivates donors.

Quam has some clues.

“It’s a very, very emotional experience for both the donor and the patient,” she says. “After that intent-to-donate form is signed, that donor is living for two people. Our donors are our most poignant advocates.”

The response is thrilling to those who worked for years attempting to launch a national registry.

Only five years ago, a panel of medical experts convened by the federal government concluded that a registry for unrelated donors wasn’t viable. The panel recommended against starting it, Quam says.

“Until six months ago, there was incredible skepticism that there were even 50,000 people in the country who would go through the donation procedure,” she says. “It’s fun now, because we have enough numbers to show that isn’t happening.”