Helping their own

The world’s first and only registry for unrelated Arab donors of bone marrow or stem cells is operating out of Hadassah University Medical Center in Jerusalem.

By JUDY SIEGEL-ITZKOVICH
Stem Cells 311 (photo credit: (University of Louisville Medical School)
Stem Cells 311
(photo credit: (University of Louisville Medical School)
There are 325 million Arabs in 22 Middle Eastern countries and other lands, but the first and so far only registry for potential unrelated Arab donors of bone marrow or stem cells – which have the ability to cure certain cancers and other serious disorders – is at Hadassah University Medical Center in Jerusalem’s Ein Kerem.
Compatibility is determined by the human leukocyte antigen (HLA) system, which is quite varied due to the large number of genes controlling human immune system function; tissue types of the major histocompatability complex are much more complicated than than the A, B, O and AB and RH+/- blood types that have to be matched for blood transfusions. Arab HLAs are generally very different from those of Americans, Africans and Europeans, and are closer to that of Jews, who are also Semites. But while some Jews can donate adult stem cells and bone marrow to some Arabs (and vice versa), an ethnic-specific Arab registry was urgently needed for the rest.
Only about 10 percent of Arab patients who need these tissue transplants succeed in finding an HLA-matched unrelated donor, compared to over 80% in Caucasian patients who find matched unrelated donors in the international registries.
In 1987, Prof. Chaim Brautbar established Israel’s first general unrelated bone marrow donor registry at Hadassah; upon his retirement, he was succeeded by Dr. Shoshanna Israel. Today, the general registry has over 80,000 people listed. Two years ago, he set up the Arab registry with veteran immunologist Dr.
Amal Bishara. Since then, data from over 9,000 Israeli Arabs (initially obtained only from peripheral blood and more recently also from buccal cells taken from the inside of the cheek) have been stored in its computers and fed into the international database in Leiden, Holland so that compatible Arab HLAs for would-be recipients can be more easily found. Yet many more samples are needed to find potential donors for those who are ill.
BISHARA, an Arab woman born in Tarshiha near Ma’alot who lives with her physician husband in Jerusalem, devotes much effort to creating awareness in Israeli Arab cities such as Nazareth, towns and villages in the Galilee and elsewhere of the need to be tested. She tells residents that 40% of Arab patients who need bone marrow/stem cell transplants need a stranger to provide them. Until the establishment of the database, Arabs both inside and outside Israel were able to obtain them mainly from family members.
“There is nothing in Islam or Christianity against being tested and giving bone marrow and stem cells,” says Bishara in her windowless, tiny office in the hospital. “It’s a problem of awareness, and increasing it is part of my job.” She reveals that due to her work, she has not taken a day’s vacation in two years. She received her master’s and doctoral degree from the Hebrew University of Jerusalem and went to a Harvard-affiliated lab in Boston to do her postdoctoral work. She has worked in the Hadassah lab since 1988.
“She is a pioneer,” comments Brautbar, “and this program is a pearl. Going to the Arab communities, both Muslim and Christian – and persuading them to give samples is no easy task. It is very sensitive. But Amal managed to persuade kadis, sheikhs and priests to endorse it, and Muslim religious leaders have even issued fatwas to do it, after giving blood themselves.
She has given talks at universities, hospitals, community centers and schools, and interviews with numerous Arabic media, and even translated information booklets into Arabic. Hers is holy work.”
Brautbar regards the database as an “important bridge between peoples.”
He adds that it was initially quite difficult to open the hearts and minds of the Israeli Arab population to the lifesaving plan of donating stem cells/bone marrow for their own people in need. But Amal managed to overcome the skepticism and apathy of the Arab communities, who by now have “come to appreciate the benefits this will bring to their people and are very supportive of our project.”
ONE POSTER distributed in Arab towns and villages shows two children who are candidates for transplants, standing in front of the intentionally faded images of two children who had died when there was no Arab unrelated bone marrow/stem cells registry. The 9,000 samples from healthy Arabs aged 18 and over were laboriously collected in 60 campaign drives in Israel. Fifty-six percent of the donors were males with a mean age of 33 and the rest were women, who are two years younger on average.
Bishara gives special thanks to the brothers Arwa and Sami Masarweh for their hard work in planning and conducting the 2009 December drives, in which more than 5,000 potential Arab donors joined the registry.
Many people also donate their time and effort to help organize testing drives, or have printed pamphlets and posters at their expense. She also expresses her thanks and appreciation “to Prof. Brautbar for his valuable support and efforts, especially in fundraising, and to my family for their help and limitless support.”
“We would like to collect at least 50,000 potential donors for the database,” says Bishara.
So far, the registry has found 24 would-be donors who are perfect matches for Israeli Arab and Jewish patients and some others abroad. Four Israeli Arab donors have donated stem cells in the past few months, and the patients are doing well; two donors will donate within a few weeks, while two others have been reserved for specific patients. Another three transplants were cancelled because of the patients’ declining conditions. Previously, patients who could not find a donor almost inevitably died.
“A retrospective analysis showed that if this project had started three years earlier, tens of Israeli Arab patients would have been saved,” says Bishara. “The study actually proved our initial assumption that Arab genetics differ from that in other ethnic groups. This analysis made me even more determined to further the project.”
A few weeks ago, Bishara presented the work of the Arab registry at the Bone Marrow Donors Worldwide Organization (BMDW) meeting in Minneapolis and aroused much interest.
Bishara notes that transplanted tissue that does not result in graft-versus-host disease can cure over 100 diseases, including leukemias, lymphomas and various genetic and immunological disorders. The success rate among children – who more often need actual bone marrow removed from a hip bone rather than stem cells from ordinary peripheral blood – is somewhat higher than in adults. The prevalence of certain genetic diseases is higher among Arabs than in the general Israeli population, says Bishara, because of consanguinity (inbreeding between cousins) remains quite common.
Today, there is an option for Arabs in other countries – even those officially at war with Israel – to find a compatible Israeli donor and come to Hadassah for a transplant, or send the bone marrow or stem cells abroad to the transplant center. However, this has not yet occurred.
“People can’t search for a donor for themselves.
There are search coordinators at hospitals that perform transplants, with each using a password for entry. The coordinators do searches and send us requests when they come across Arabs and Jews in need of bone marrow or stem cells. Sometimes we receive requests from the independent international organization as well,” notes Bishara, who personally knows all the Israeli Arab children seeking donors and many adults.
She has not tested Beduin in the Negev, she notes, because her center lacks funds. Donations of funds to cover the costs of processing samples have come from the Austrian branch of Hadassah International and other precious sources, including the Karl Kahane Foundation, but more are eagerly sought. Neither the Health Ministry nor the health funds have offered funding for the project, even though it saves lives. It costs $50 to process each test, which is performed en masse in the US where it is cheaper. Thus Bishara and Brautbar are constantly seeking donors.
Dr. Amal Bishara can be contacted via e-mail to amal@hadassah.org.il or by phone at +972-2-6777690 and Prof. Chaim Brautbar to brautbar@hadassah.org.il or by cellphone at +972-50-8673958.