May 30, 2012
Israeli, U.S. drives aiming to increase number of non-Ashkenazi bone marrow donors
For nearly a year, Julie Gavrilov has been trying to find a match for her father, Mark.
Diagnosed with a rare and aggressive blood cancer, he needs a stem cell transplant to survive the disease.
A Bukharian Jew born in Uzbekistan, he will have the best chance of survival if he finds a donor from within his own ethnic community.
Since learning of her 58-year-old father’s diagnosis, Gavrilov, an attorney in New York, has organized a donor drive at a Bukharian Jewish community center in the Queens borough of the city, written heartfelt messages for local synagogue newsletters and posted her plea on Facebook.
A compatible donor has yet to be identified, but Gavrilov, 32, is hopeful that the person who can save her father’s life will be found.
“It just takes one person,” she said.
Finding that person for Jews of non-Ashkenazi descent can be especially difficult.
A non-Ashkenazi Jew at best has a 40 percent chance of finding a donor, compared to nearly 70 percent for Ashkenazim, said Jay Feinberg, founder and executive director of Gift for Life, a bone marrow, blood stem cell and umbilical cord blood registry dedicated to recruitment within the U.S. Jewish community.
This discrepancy is due in part, Feinberg said, to the low number of non-Ashkenazi donors in the international donor registry—in particular Jews from the Iraqi, Persian, Georgian, Bukharian, Lebanese, Syrian, Yemeni and Ethiopian communities.
“The numbers are not where we want them to be,” said Feinberg, a bone marrow recipient himself who founded the Gift of Life foundation more than 20 years ago as an outgrowth of his search for a donor.
Adding 40,000 to 50,000 more people to the registry would make a major difference in finding donors, he said.
Also complicating matters, according to experts, is that members of these communities have been intermarrying with Jews from other ethnic backgrounds.
Such unions may be a boon for social cohesion and integration, but they further weaken the potential donor pool for those best served by a donor with two parents from the same ethnic group.
To help address the shortage of donors, multiple targeted campaigns are being conducted in Israel and the United States.
Gift of Life has embarked on such outreach campaigns and has held dedicated donor drives often for specific cancer patients from these communities, like Gavrilov’s father.
Most important, Feinberg said, “we need to let people know that [their communities] are very underrepresented in the registry.”
“My plea is to the entire Jewish community and not only in the interest of my father, but many others who need to find a match,” Gavrilov said.
Israel, with its sizable concentrations of Jews from multiple ethnic backgrounds, is “one of the best places in the world to find potential donors,” said Levi Blumenfeld, director of marketing for Ezer Mizion, which houses the largest Jewish bone marrow registry in the world.
Headquartered in the central Israeli town of Petach Tikvah, Ezer Mizion boasts a registry listing approximately 600,000 potential donors. The goal is to increase the number to more than 1 million, Blumenfeld said.
To help increase the numbers—especially in the underrepresented Iraqi, Bukharian, Georgian, Ethiopian and Yemenite Jewish communities—Ezer Mizion is holding a targeted donor drive this week that will take place simultaneously throughout Israel.
Blumenfeld said the organization is hoping to test 20,000 potential donors on May 31 at 100 testing stations in shopping malls, synagogues and community centers.
A media campaign was launched to drum up awareness. Talk show host Eli Yatzpan and singers Sarit Haddad and Eyal Golan were among the celebrities recruited for public service announcements.
The campaign also tapped rabbis to help educate members of the underrepresented communities and reduce fears about the donation process, said Dr. Bracha Zisser, who founded the Ezer Mizion in 1998, three years after her husband was diagnosed with lymphoma.
Following chemotherapy and radiation, he had a successful bone marrow transplant.
“As we spoke to people” about this week’s drive, “most thought that to be a donor, it was very dangerous,” she said. “They really didn’t know that today it’s very easy.”
A simple saliva sample is all that is required for inclusion in the registry. And while donating bone marrow or stem cells is a significant commitment, it often is an outpatient procedure that is given under anesthesia.
The side effects are minimal and may include flu-like symptoms that last only a short while.
“I really hope they will come out; it will help Jews all over the world,” Zisser said. “I promised myself that I would not let anyone die because they couldn’t find a donor. It is my cause that every Jew, everywhere, when they need it, can find a donor.”