Medicine: Equality Down to the Marrow
Last June, the popular Saudi Arabian daily Al-Watan had something positive to say about its regional neighbor.
Columnist Fawaz al-’Ilmi told readers that “the only registry in the world for Arab bone marrow donors is located in the Hadassah Medical Center, associated with the Hebrew University of Jerusalem.” Noting that “Arabs living in Israel constitute no more than 1.5 million of the world’s 400 million-plus ethnic Arabs,” he credited Amal Bishara, an Arab woman with a doctorate in life sciences and immunology, with building the groundbreaking registry.
“We were delighted with the mention,” says Bishara, a 35-year veteran of Hadassah’s tissue typing and immunogenetics department, of this rare praise for Israel in the Arab media. “It honors Hadassah and promotes the urgency for an Arab registry.”
This is the second time Hadassah has been first with a bone marrow bank. In 1987, it opened Israel’s first Bone Marrow Donor Registry, shortly after doctors learned how to transplant the spongy tissue inside the bones of healthy donors into sick patients.
“Setting up a registry of unrelated bone marrow donors in Israel was essential,” says Dr. Chaim Brautbar, the driving force behind the bank and former head of tissue typing and immunogenetics at Hadassah. Stem cells in donated bone marrow replace sick cells with healthy ones and are the only known cure for many inherited diseases and cancers, he explains. But donated bone marrow must be a close genetic match.
“Because every ethnic group has distinct inherited markers, Israelis [and Jews worldwide] have a greater chance of finding a matched donor in an Israeli bank than in a European or North American registry,” Dr. Brautbar says. “With every member of a devoted team putting a shoulder to the wheel, we created a registry in the 1980s that saved and continues to save lives.”
Hadassah’s registry today has some 100,000 potential donors as well as over 7,000 umbilical cord-blood units, their details among the 18 million entries in the global databank of the World Marrow Donor Association. From the outset, however, there were few Arabs among the entries. As recently as four years ago, only 200 Arab donors were listed in Hadassah’s registry.
Suspicion and lack of knowledge have stopped Arabs coming forward as donors,” says Shoshana Israel, who joined the tissue typing unit in 1993 and succeeded Dr. Brautbar as its head nine years later. “Several attempts were made over the years to set up an Arab bone marrow bank, but none succeeded. We needed funding for a targeted outreach and the right person to spearhead it.”
Dr. Brautbar found the funding: He approached Hadassah Austria under its president, Susi Shaked; the Karl Kahane Foundation of Switzerland; as well as the Jewish Community Endowment Fund of the Jewish Community Federation of San Francisco, which had also supported the original registry since its earliest days, and convinced them of the value and exigency of this new project. It is these organizations that cover the fee for donor testing and registration as well as the printing of recruitment posters and leaflets.
And the right person, it turned out, had been in the unit all along. Bishara came to Hadassah’s tissue typing lab in 1976 for a postgraduate degree, followed it with a doctorate in microbiology and immunology and stayed on, enjoying “the combination of clinical practice and clinical research,” she says. Born into a large family in Tarshiha near Ma’alot in the Galilee, she lives in Jerusalem with her physician husband and two children.
Accepting the job of building and managing an Arab bone marrow bank, she told her family at the time, “I’m taking on a major project that will keep me very busy.” Not only did they and her wider family support her, “they came totally onboard, helping me explain, recruit and register donors. Friends, retired nurses, bereaved families—everyone wanted to help.”
Equipped with the person and the means, the unit was determined to succeed in building the world’s first Arab bone marrow donor bank. Brainstorming together, the Hadassah team decided there were three fundamental parts to the message that Bishara would take to Israel’s Arab community.
“First, they must know what the bank is, why a stem cell donation can save lives and what is expected of the donor,” says Israel, who has a doctorate in biochemistry. “Second, they must understand that the reason sick Arabs rarely find Jewish donors is because the genetic makeup of the two populations differs—and has nothing to do with discrimination. And, third, they must realize that an Arab registry is an insurance policy for their own community.”
Bishara began work on the bone marrow bank in October 2008. She translated Hadassah’s explanatory fliers into Arabic and produced a large poster of two Israeli Arab boys dying of inherited diseases. “I took these first to Israeli Arab health professionals and then began holding drives in Israeli Arab population centers,” she says. “Whether I’m talking to one person or a hundred, I simply give the facts. I tell people there are 18 million donors registered worldwide and a European searching in Europe has a 90-percent chance of finding a match, but that there was no Arab registry anywhere in the world till now. People listen because I come from the same community and, perhaps, because I am a woman. Once they understand, they respond—men and women in equal numbers.”
Four years later, she has been to over 90 Israeli Arab towns and villages, signed up 15,000 donors and is still unflaggingly transmitting her message—at universities, hospitals, community centers and schools, and in print, electronic and social media.
She has also begun widening her focus from the Israeli Arab community to Palestinians in the West Bank, among whom suspicion of Israel runs deep. “The pressure to enlarge the registry is constant,” says Shoshana Israel. “With each new entry, we increase its diversity and enhance the chance of finding a matched donor.”
The large intermarried families common among Israel’s Arab community increase the likelihood of finding a match within the family, but this is a very mixed blessing.
“A European has a 30- to 40-percent chance of finding a donor within his or her family, whereas among Israeli Arabs it’s 60 percent,” says Bishara. “But the rate of consanguineous marriage also means that genetic disease is widespread.”
According to one study, the rate of genetic disease among Israeli Arabs is almost double that for Western Europe, afflicting 94 in every 1,000 children. Its treatment: bone marrow transplanting from a matched donor. “In Israeli Arab children, about 8 in every 10 stem cell transplants are for genetic disease, with a cure rate of 80 to 90 percent,” says Bishara. In Jewish Israelis, most stem cell transplants are for malignancy, with a cure rate of 40 to 90 percent, depending on factors such as type and stage of disease and age of patients—a rate constant worldwide.
In the almost four years since the concentrated campaign for an Arab bone marrow donor registry began, Bishara has clearly gotten her message across. “When a child needed a donor recently, our phone didn’t stop,” she says. “Finding a match is very exciting. One 19-year-old donor told me she felt it was the first good thing she had ever done.”
This young woman is one of 70 on the Arab registry who have been genetically matched to patients in Israel and abroad, and one of 11 who has given stem cells to date, with another three donations being processed. Ironically, the first recipient from the Arab registry was a Jewish woman. She and six others have made full recoveries. “We warn donors that the transplant may not succeed,” says Bishara. “We tell them: You’re doing what you must. Whether it works is not in your hands.”
Hadassah observes the international agreement that patients and donors are initially anonymous to one another. A year after a successful outcome, donors and recipients may identify themselves and meet through the registry. This is what happened at Hadassah–Ein Kerem earlier this year, where an emotional encounter took place between 8-year-old Hala Bayumi and 42-year-old Muhamad Azzam, and between 18-month-old Muhamad and 21-year-old Maharan. Both children are fully recovered. A third meeting took place privately between an Arab donor and a Jewish patient.
“These donors gave people whom they had never heard of a chance to live,” says Bishara. “I look back at my four years with the registry, at the leap from 200 to 15,000 donors, and I’m filled with joy both for the professional opportunity and for the chance to give something to my community.”
ON BECOMING A DONOR…
►Registry donors must be 18 or older. Their DNA is collected by swabbing their inside cheek, rather than via a blood test, as was the norm, when Hadassah founded its bone marrow registry. Dr. Bishara often recruits youngsters to swab parents or teachers.
►Swabs are analyzed in an American lab and typed in high resolution, which speeds the search for a donor. When matching a donor and recipient, samples are initially screened for six matching factors. If these are found, tissue-typers try to match at least four more.
►The biological ID card of each individual comprises 12 HLA (human leukocyte antigen) loci, six from each parent with more than 5,000 forms (alleles); this gives siblings a one in four chance of matched HLA.
►An emergency search for a match for stem-cell transplantation can take just three weeks, but the norm is a couple of months.
►When no suitable donor is found, Hadassah searches its umbilical cord-blood bank, which has 7,000 units and is growing steadily. With cord blood requiring a less-than-perfect donor-recipient match, it is often the solution for minority populations, such as Israel’s Bedouin.
►Marrow stem-cells today are usually extracted from blood rather than bone. Donors receive five days of injections to raise their stem-cell count. They are then hooked to an apheresis machine that harvests stem cells from their blood.
►In children with genetic disease, stem cells are more often extracted from marrow.