Marrow Matters

Matchmaker Jay Feinberg ’90 gives others the gift of life

by Chris Maier '99

March 31, 2011

In December, Jay Feinberg ’90 visited President Barack and Michelle Obama in the White House to share his organization’s mission.

This article originally appeared in the spring 2001 edition of Dickinson Magazine.  

At 22—just weeks after receiving a law-school acceptance letter, and while working as a foreign-exchange analyst in New York City—Jay Feinberg ’90 sat in a hospital room, listening as a doctor explained that he was probably going to die. Leukemia was the diagnosis—chronic myelogenous leukemia to be exact. Feinberg and his family were told that a bone-marrow transplant was the only hope. As they soon learned, the search for a matching donor can be long, laborious and heartbreaking. But the prospect of a donor was hope—it was something. And with that hope in tow, the Feinbergs began their search.  

“When they tell you about it, you’re obviously in shock,” says Feinberg, remembering the morning that “leukemia” became a permanent and inescapable part of his vocabulary. “You feel like they’re just talking—they’re talking right through you.”

Feinberg is talking from the house in Delray Beach, Fla., that is being transformed into the headquarters of the Gift of Life Bone Marrow Foundation—the nonprofit organization started as a donor recruitment vehicle in 1991 and converted into an official bone-marrow registry in 1997. Late in the fall last year, a contractor—who has a family member stricken with leukemia—gifted the home to GOL. As Feinberg—GOL’s managing director—and his staff settle in, he continues to provide hope for people enduring what he himself once endured.

Soon after Feinberg received his own diagnosis in 1991, he began to understand that his only hope for survival was lodged in locating a suitable bone-marrow donor—a person with matching human leukocyte antigens (HLA), which are proteins on the surface of white blood cells. At this point, the word “cure” also became ingrained in his words and thoughts. The first step, the doctors said, was to test his close relatives and search the existing bone-marrow databases. The family search showed that his two older brothers, Eddie and Steven, matched each other but not him; a search of all worldwide registries—which then held less than one million names, though today consist of seven million donors—turned up about a dozen possibilities, but no matches.

“So we had a choice: to wait or, as an alternative, to do something,” Feinberg says matter-of-factly, leaning his elbows among the papers on the desk. And what they did was begin the search for distant relatives—eventually locating and testing 500 relations in various corners of the world. Then came a broad quest for donors that led to the inception of Friends of Jay Feinberg and the Gift of Life Bone Marrow Foundation—the sister groups first publicly working under the former title, though eventually merging under the latter. The result was 225 donor drives (including a Dec. 4, 1991 stop at Dickinson) to collect blood samples to test for matching tissue types with Feinberg and other patients and 55,000 new donor names added to various registries around the globe.

“It was an attempt to control a situation that we had very little control over,” he says. But Feinberg emphasizes that Friends of Jay was not simply a fight to save his own life. On a larger level—more vast than he could have foreseen when Friends of Jay began—it was a fight for patients around the world who needed bone-marrow transplants. By 1995, the foundation had gone from the local headlines in his Northeastern New Jersey community to global renown, with media attention and increased participation boosting the cause. But Feinberg was still without a donor. And time, the doctors told him, was running out.

In 1821, just before succumbing to tuberculosis, 25-year-old poet John Keats uttered his own epitaph to a friend: “Here lies one whose name was writ in water.” The tragic force of these words is that Keats knew—as we know today—that he had much to contribute to the world, much more than his limited time would allow. Surely Jay Feinberg, also in his mid-20s as he fought for his life, was wrestling with similar contemplations of mortality and legacy.

Keats and Feinberg have another thing in common: both men learned about medicine by necessity. Keats, orphaned, was put into a surgical apprenticeship by his guardians, a career track which he eventually abandoned as a late teen. Feinberg was a little older when he cultivated his knowledge of biology, and he didn’t have the luxury of studying it with a profession in mind.

“It was a crash course,” he says of learning about his body as he dealt with his illness. “I didn’t even take any biology courses at Dickinson.” He laughs. “Astronomy was my [science] elective.”

In fact, during his comparatively carefree days at Dickinson, Feinberg lost himself in political science—his major, in preparation for his law-school ambitions—and art, particularly the creation of stained glass, a hobby that he developed under the tutelage of Professor Emeritus Dennis Akin.

But just a few years later, as his health continued to decline, his time and energy for these passions had dwindled. Center stage was occupied by biology. And fund raising. And searching. Surviving.

“Something like this changes your life,” he says, “changes your perspective.”

“In my case, the likelihood of finding a tissue match was fairly remote,” says Feinberg, explaining that his lineage—Ashkenazi Jew from Eastern Europe—is both rare and underrepresented in donor registries. So when a “major mismatch”—five of six antigens matching—turned up at a 1995 drive in Israel, Jay and his family decided to try it. Because his leukemia had accelerated, and the match was far from perfect, the chances of survival were slim. “But every patient is a statistic of one,” says Jay, and with that attitude he prepared to travel out to the Fred Hutchinson Cancer Research Center in Seattle, where the transplant would be performed.

And that’s when Benji Merzel intervened. Merzel’s acquaintance with Feinberg began when he discovered the efforts of Friends of Jay. One of Merzel’s friends was battling leukemia and, as a result of the Friends of Jay drives, found a matching donor. When Merzel heard that Feinberg was going to settle for a major mismatch, he asked the family to let him hold just one more drive. Feinberg and his family declined—time was limited; they were resolved. Merzel insisted. And soon he and a neighbor, Becky Faibisoff, were traveling from their homes in Chicago to the drive site in Milwaukee.

By the end of the day, Merzel, Faibisoff and the other volunteers had administered about 150 tests. They were cleaning up the medical supplies when Faibisoff made a decision that would forever alter Feinberg’s life. Despite her fear of needles, she wanted to have her blood tested.

Of the approximately 55,000 people tested during the Friends of Jay campaign, Faibisoff’s “is the last barcode at the bottom of the list,” says Feinberg—the last blood sample taken and the best match. Soon Jay was in Seattle, ready to see if the donation from Faibisoff—a complete stranger—could save his life.

Though Jay was excited and optimistic, the doctors were obligated to tell him that—considering his deteriorating condition and the fact that no person can have a perfect match—his chances of surviving long after the transplant hovered around 10 percent. But at the time, Jay didn’t let numbers affect him.

Numbers began to matter more five years later. On July 28, 2000—after several years of tedious recuperation and gradual reintegration into a normal life—Jay celebrated the fifth anniversary of his transplant, an unofficial threshold for transplant patients. During those five years, he met Becky Faibisoff in person (“A very emotional experience),” he endured a hip replacement, he moved to Florida, he continued to expand the Gift of Life Bone Marrow Foundation, he met with daily successes and endured daily challenges.

“Even today,” he says, “I have good days and bad days.” But he never loses sight of his goal: to help patients, to give them hope. And he does this by working with one paid employee and several in-house volunteers, as well as more than a hundred volunteers nationwide. Volunteerism is essential to GOL, as its funding comes primarily from public philanthropy, as well as corporate and financial grants and transplant-center reimbursements. Working with his staff, Feinberg draws contributions and attention to the organization, hosts events, maintains a vast database of donor results, works with and counsels donors and, most important, helps patients to know and navigate their options.

“I do what I have to do to get the job done,” he says, recalling the many evenings when he’s worked on a patient’s case until well after dark. “Again, it’s a personal thing.”

Now, as Feinberg continues to reclaim his health, he’s not thinking about returning to his dreams of practicing law. “This is more important,” he declares about his work at GOL. But while law has drifted out of the picture, art may soon return.
In a cluster of boxes in Feinberg’s apartment, his stained-glass supplies await.

“I guess it would be something along the lines of impressionism,” Feinberg says, imagining that he’ll soon find the time to work on his art again.

Hanging opposite his desk, “Les Coquelicots”—the Monet masterpiece—brightens the room with its blue skies and dollops of poppy-field red. It’s the potent brushstrokes of impressionism that attract him, Feinberg says. They “exhibit powerful emotion.”

Like Monet’s brush on canvas nearly a hundred years ago—and Keats’s pen on paper a hundred years before that—Feinberg’s daily strides to help patients are charged with emotions welling from his own life experiences. He’s encountered a mountain of sensations over the past decade, and at the top there’s hope, as brilliant as a Monet poppy in full bloom.

For now, Jay Feinberg has a mission: to help patients climb toward recovery, to convince patients that there’s hope. It’s not exactly stained glass, but it’s definitely a work of art.

Read the current Dickinson Magazine article, "Upping the Odds."