Bone Marrow Registry in Jerusalem Offers Hope to Arab Cancer Patients
By: Cale Salih. posted on Thu, Dec 27.
When Suleika Jaouad, a 24-year-old writer, found out she would need a bone marrow transplant to cure her cancer, doctors told her that her mixed ethnicity — Tunisian and Swiss — could make it difficult to find an unrelated donor. Fortunately, Jaouad’s brother turned out to be a perfect match. But for the roughly 40% of Arab patients who cannot find a match in their own family, the odds of finding an unrelated match are not in their favor.
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The Hadassah Center in Jerusalem offers the only extensive Arab-specific bone marrow registry in the world for cancer patients, writes Cale Salih.
Author: Cale Salih
posted on: Thu, Dec 27, 2012
It can be hard for Arab cancer patients to find a genetically compatible donor — and even harder for interracial Arabs like Jaouad — on international bone marrow registries, since Arabs make up only a tiny portion of registered donors. In fact, the only extensive unrelated Arab bone marrow registry is located in the Arab world’s least favorite country — Israel.
Dr. Amal Bishara, an Israeli Arab, launched the Hadassah Medical Center‘s Arab bone marrow registry in 2008 in Jerusalem. Through more than 90 awareness campaigns and bone marrow drives in Israel and the West Bank, she has succeeded in enrolling 23,094 Arab donors, some 4,000 of whom are currently being evaluated for their human leukocyte antigen (HLA), the tissue that determines the degree of match between a bone marrow recipient and donor. So far, the Hadassah registry has matched 105 Arab donors with Arab and non-Arab patients in Israel and abroad. 22 of these matched donors went through with the process, donating their bone marrow or peripheral blood stem cells to local and international Arabs, and also to non-Arabs.
“The response of the local Arab community was more than expected, and [the] only limitation for continuous donor recruitment is shortage of funding; the cost of HLA typing of each recruited donor is $50,” said Bishara. “Most of the matched donors were cooperative and were willing to proceed with further testing and donation.”
Despite travel restrictions between Israel and the Palestinian territories, Bishara has been able to reach the West Bank. She conducted a donor drive in Ramallah (gaining 400 donors) and in Beit-Sahour (75 donors), and has recruited donors from Hebron. Recently, a 9-year-old Arab girl from the West Bank— who suffered from a genetic blood disorder — found a match through Bishara’s registry after waiting her entire life.
Still, Bishara said: “One big limitation is collecting blood sample from donors from the West Bank, once they are match, since they do not have a permit to come to Jerusalem.” Additionally, she has been unable to reach Gaza, because it is under siege and difficult to reach from Israel.
Despite the difficulties an Israel-based registry faces in reaching Arab communities, Hadassah has gained more ground than any similar efforts in Arab countries. Institutional capacity partly accounts for the discrepancy. Israel ranks far ahead of any Arab state on Scientific American’s Global Science Scorecard, and ranks higher than any Arab state in terms of education. Because of bad governance, overemphasis on energy-related industries, and lacking education systems, Arab states have generally placed less emphasis on medical advancements and scientific research.
Arab states also fall far behind other Middle Eastern countries; Bone Marrow Donors Worldwide (BMDW), an organization that compiles registries from all over the world, includes five Israeli registries, three Iranian registries, three Turkish registries, and one Armenian registry. The only Arab state listed is the United Arab Emirates, but the number of donors on that registry (64, which includes both Arabs and South Asians) is smaller than the turnout of many community-driven bone marrow drives. Another small registry exists in Saudi Arabia, but it is not listed on the BMDW.
Awareness about bone marrow donation is largely driven by registries, so the lack of registries based in the Arab world partly explains why so few Arabs sign up for international bone marrow registries. This combined with the lack of Arab-specific registries stacks the odds against Arab patients in need of an unrelated donor.
Nadya Dutchin, national account executive at the world’s largest registry, Be The Match, explained: “Our immune systems are inherited over generations, it comes down to the exact village where someone is from. It’s important to have people from the same country, village, tribe, because those immune markers are very specific to where we are from.” According to Dutchin, a Caucasian patient has a 93% chance of finding a match from the 10 million registered donors on Be The Match. Arabs are often classified as Caucasian, so determining the Arab-specific success rate is difficult, but according to Bishara’s research, Arabs have around a 10% chance of finding an unrelated match on international bone marrow registries.
Arabs have a much higher chance of finding a related bone marrow donor (60%) than do families in the West (30%). This is due to higher rates of intermarriage in Arab societies, which make families more genetically homogenous (but also have the negative effect of increasing the rates of genetic disorders). According to Bishara, the relatively high chances of an Arab finding a related match gave rise to “the idea that we do not need bone marrow donor registries”, accounting for one of the reasons that Arab states have fallen so far behind in creating unrelated registries.
Another reason for the lack of Arab bone marrow registries is the shortage of bone marrow transplant centers in the Arab world. Dr. Amin Hussain Al Amiri, assistant undersecretary for medical practice and license in the UAE and head of the small registry based in the UAE, said that a key obstacle to growing his registry is a lack of awareness in the UAE of bone marrow donation, partly because there is no bone marrow transplant center in the Emirates. Bone marrow transplant centers exist in other Arab states, such as Lebanon, where registries do not exist — this disconnect makes it difficult for national registries to concentrate their awareness campaigns.
“While we don’t have a bone marrow transplant center [in the UAE] you cannot emphasize educating the community,” said Amiri. “The people [in the UAE] are very active in blood donation. If we start [a transplant center] there will be strong potential from blood donors who could become bone marrow donors.”
The same misconceptions that exist in the west about bone marrow transplants, namely the impression that becoming a donor is more dangerous and painful than it actually is, stymie registry expansion efforts in the Middle East. Bishara explained: “The medical community of this field did not initiate and encourage establishing registries; partially because they thought that the community will not accept the idea of donating bone marrow because of the fear of bone marrow donation process.”
Beyond these worldwide misconceptions, a set of superstitions, suspicions and political sensitivities specific to the Arab world create unique challenges for bone marrow registry campaigns in the region. Jaouad said: “In Tunisia, where my father is from, you don’t say the word ‘cancer.’ People are very superstitious and don’t like to talk publicly about their medical conditions. I respect these traditions but I can’t help but wonder: if you can’t even say the word ‘cancer,’ how can we raise awareness and encourage people to give blood, let alone sign up to be a bone marrow donor?”
Besides these cultural considerations, the Hadassah Center must adapt to an environment characterized by high levels of Arab-Israeli distrust. Bishara has made a special effort to explain to the Arab community in Israel and the West Bank that the reason Arabs are rarely matched with Jewish donors is because of the genetic differences between the two communities, not because of discrimination.
The Hadassah registry can overcome some political obstacles thanks to the nature of international bone marrow registries — the BMDW, for example, is responsible for the coordination of worldwide distribution for international registries. Patients from Arab countries, even those officially at war with Israel, can be matched with a donor from Hadassah. Bishara explained that Arabs outside of Israel “are more than welcome to come to Hadassah Medical Center in order to look for a matched donor, and in fact they do not need to come to because our donors are registered in the American National Marrow Donor Program (NMDP) and the World Marrow Donor Association (WMDA). Once a matched donor from our registry is located in one of these world centers, the medical center in which the patient is treated will contact our registry and will initiate the testing and donating process.”
Most patients are not allowed to know the identity of their unrelated donor until a year or more after the process, so it is possible that an Arab from outside Israel would receive bone marrow from a donor on Bishara’s registry without knowing where his or her bone marrow was coming from.
“When it’s your child or your mother or your wife who might die, you don’t really care what ethnicity the donor is. You just want your loved one to survive,” said Jaouad. “That’s why I believe the solution is not to have nationalized registries, but to have a MENA [Middle East and North Africa] region registry, one big umbrella registry with national chapters.”
Both the UAE and Hadassah registries are on the BMDW, but the two have no official bilateral contact. Because of travel restrictions and mutual suspicions between Israeli and Arab communities, it would be difficult to conceive of an open channel of cooperation between the two. And yet, cooperation between Israel and Arab states — and even Iran — on scientific endeavors is not unheard of. Recently, Iran, Israel and several Arab states including Lebanon and Egypt, came together to launch a major intergovernmental scientific facility in Amman called SESAME. The vision of a regionwide registry, with Bishara’s registry as a starting model, could prove to be a project that both sides, while remaining politically irreconcilable, deem worthy of cooperating on.
Cale Salih is video editor for Al-Monitor based in Washington. Previously, she was a fellow at the International Crisis Group writing reports on Lebanon and Syria. Follow her on Twitter @callysally.