Bernice Loiacono and her two dinner guests could not be seated at Baltimore's Someplace Fishy restaurant without a reservation, the hostess informed them.
"Are you kidding?" Loiacono remembers bursting out, introducing the manager to the younger of her two guests. "This woman is going to be donating bone marrow tomorrow morning, she's going to be on the 11 o'clock news tonight, and this is where she wants to eat." Loiacono and her companions -- 33-year-old Ski Bennof of Silver Spring and her mother, B.J. Imus -- got their table.
After dinner, the three women lingered in the restaurant's bar to watch the news. The bone marrow story was the lead item, and a hush descended as everyone at the bar recognized Bennof as the heroine on the screen.
"Immediately after the report was over, there was a roar of applause," says Loiacono, who is coordinator of the Bone Marrow Donor Program at the National Institutes of Health. "All those people were spontaneously expressing their awe over what Ski was willing to do to help somebody else, somebody she didn't even know."
Bennof's bone marrow was successfully harvested the next morning, Feb. 19, in a 90-minute operation at Johns Hopkins Hospital. The manager of Someplace Fishy sent flowers.
What motivated Bennof to undergo a potentially risky, uncomfortable procedure for the sake of a total stranger a continent away? "I have two children, a 3-year-old and a 5-year-old," she says. "How could I expect someone to be there for my kids, if one of them should ever need a bone marrow transplant, if I didn't make myself available to someone else?"
The bone marrow recipient, a 33-year-old man with aplastic anemia known to Bennof only as Ken, is currently recovering at the University of Washington Medical Center in Seattle. His own bone marrow had ceased functioning 13 months earlier, and he had been receiving transfusions of whole blood about once a month and of platelets -- the blood cells required for clotting -- once a week or more.
When his body began rejecting the donated blood, as often happens with such frequent transfusions, Ken's only hope was a bone marrow donation. Neither of his two brothers matched Ken's tissue type, which is why his doctors sought an unrelated donor through the new National Bone Marrow Donor Registry.
Ken's doctors in Seattle will not know for weeks whether his body will accept Bennof's bone marrow and use it to start making red cells, white cells and platelets on its own.
Impressive as her sacrifice seemed to the people in that Baltimore bar, Bennof is far from unique in her willingness to donate her body tissue to save a life. More than 4,000 people have donated bone marrow to relatives who needed it since the technique was developed in 1968. Four other persons, from Wisconsin, Minnesota and Georgia, have donated bone marrow to save the lives of strangers, and two more such donations are scheduled for later this week. And 15,000 other people nationwide, including about 500 at NIH, have agreed to enter their names, along with certain tissue typing information, into the national registry.
Being on the registry is not a commitment, of course. "I never really thought I'd be asked to go through with it," admits Bennof, who is a health educator. "I thought I was just making a noble gesture."
But for those on the registry whose tissue is a "paper match" for an individual who needs a bone marrow transplant and has no sibling match available, that gesture could turn quickly into some very demanding action. First comes a preliminary match, based on the system of HLA antigens used to categorize white blood cells (much as ABO blood types are used to categorize red blood cells). After further HLA typing, if the match still holds, the donor gives blood for a mixed leukocyte culture test, in which donor and recipient white blood cell samples are combined in the lab.
In Ken's case, two people at the NIH center matched for HLA types. But only Bennof's white blood cells were accepted by Ken's.
Once the mixed leukocyte culture hurdle is passed, the donor-recipient pair quickly reaches a point of no return. The donor agrees to go through with the harvesting procedure, in which a long needle is inserted repeatedly deep into the bone, usually the hip, to draw out marrow. This involves anesthesia, hospitalization, some pain (although Bennof says the procedure itself didn't hurt), and a week or two of soreness and discomfort.
About 10 days before the harvest is scheduled, the recipient is prepared for the transplant with massive doses of drugs or radiation that wipe out his entire immune system.
This step minimizes the likelihood of rejection. But it also means that if the donor backs out at the last minute, the patient will certainly die.
According to Bennof, the point of no return occurs long before the recipient is irradiated. It occurs the moment the donor is told that a match is possible. "Once they call you up and say they have someone who needs a transplant who has your tissue type," she says, "how could you turn away and say no?"
Potential donors seem motivated by a variety of factors: gratitude for their own health, an awareness of the precarious nature of good fortune, a history of severe illness in a friend or loved one, or just pure altruism. None of the donors is paid.
"To the few bone marrow donors I have interviewed, this kind of altruism appears to be a strong part of their identity," says Dr. Roberta Simmons, professor of sociology at the University of Minnesota and of sociology and psychiatry at the University of Pittsburgh. "They don't regard this as such a big deal as you and I might. Helping people is just what they do." All 500 of the NIH participants already were active in the NIH platelet donor program, which now has about 2,500 participants. To donate platelets requires far more commitment, and inconvenience, than a regular blood donation. Unlike donating whole blood, donating platelets can take about two hours. During the procedure the donor sits with a large needle in each forearm, unable to read a book or scratch his nose, while his blood is filtered through an apheresis machine that separates platelets from other blood components, which are returned to the donor.
In part, logistics led to the use of platelet donors as potential bone marrow donors, since anyone involved in the platelet program already had been HLA typed. But in part, platelet donors were approached because they are special.
"These people are just wonderful," says Dr. Susan Leitman of NIH's Platelet Pheresis Center. "The feeling of being able to help people is an incredible high for them. If they come in to make a donation and for some reason we have to turn them away, like if they have a cold or a slight fever, some of them just burst into tears."
Many of the platelet donors know of someone who once benefited from a transfusion -- or died from the lack of one. "In a way, I guess I'm trying to fix something that didn't happen right the first time around," says Christopher Hoff, 32, a once-a-month platelet donor whose wife, Joanne, died of leukemia in 1980 before her doctors had a chance to try a bone marrow transplant. "But I'm not really doing it for my wife. When she was sick and needed lots of transfusions, I saw how difficult platelets are to obtain."
Hoff thinks most people with such inside information would be motivated to donate as he does. But not just anyone makes the leap from seeing the need to doing something about it.
"What impresses me about these people is the intensity of their desire to help," says Simmons. "Some of these people help out in all sorts of ways. One man I talked to regularly helps out the older people on his street, shoveling snow for them and so on. For them, donating blood -- and, later, donating platelets and donating bone marrow -- is their way of helping." Gary Murray, 37, a biochemist from Silver Spring, began making regular platelet donations 10 years ago, when he worked at NIH and saw young leukemia patients every time he walked to his laboratory in the NIH Clinical Center.
When he agreed to enter his name on the bone marrow donor registry, "My wife's immediate reaction was, 'Oh, God, that's going to be very painful,' " he says. "Well, pain goes away."
Murray says he became a donor for the same reason he became a scientist: "I want to have the feeling that I'm contributing to the general good." But there is an emotional component to his commitment, as well, dating back to two brushes with serious illness during his boyhood.
"I remember my hospitalizations, and especially the way it scared the living daylights out of my parents," Murray says. "It left the impression on them, which they transmitted to me, that you can't always be sure of what's around the next corner.
"Since now I'm in perfect health and I've had a string of successes in my own life, I'm glad I can do something for others."
Chris Hoff agrees. "Life just ain't fair," says Hoff, who is an attorney. "Sometimes bad things happen to people for no good reason. The medical advances that have allowed doctors to take my platelets and use them to help somebody, or to take my bone marrow and use it to keep a person alive, are a small way of being able to beat the system of randomness. It's a great pleasure to be a part of that."
Robin Marantz Henig is a Washington free-lance writer.
People interested in joining the National Bone Marrow Donor Registry may call 496-0572.