Imagine that you are an Arab father whose child is suffering from a rare genetic disease. Doctors are candid with you – a bone marrow transplant is your child’s only hope for survival.
The first hurdle is to find a bone marrow donor who is a good genetic match for your child. The doctor encourages you to have the entire family tested and expresses hope that a match can be found. You are quite optimistic about the chances of finding a match. Like many Arabs, you have a big extended family to turn to. You have five other healthy children, six siblings, and your wife has eight siblings. Together, you and your wife have over forty nieces and nephews.
The family eagerly undergoes testing, each person hoping to be the match, the one that will save your child’s life. One by one, the results come back. Despite a large pool of blood relatives, no one is a match for your child.
You are stunned, then terrified.
“Now what do we do?” you ask the doctor. “Where can we find others who might be a match?”
The doctor is able to hold out one last possibility.
“There is one hospital in the world that has a bone marrow registry for Arabs. At this point, is our last and best chance for finding a match.”
Relief washes over you. There is still a chance to save your child.
“Where is this hospital? Who are these angels?”
The doctor replies, “The hospital is called Hadassah, and it is in Jerusalem, Israel”.
Surprised? I was stunned to discover this not-so-well-known fact. The Arab Bone Marrow Registry was established at Hadassah Hospital in 2008.
It is managed by Dr. Amal Bishara, together with Prof. Chaim Brautbar who founded Hadassah’s tissue typing unit, and Dr. Shoshana Israel, its current director. It was created to fill a real need – some 40% of Arabs are not able to find suitable donors.
Israel, with an Arab population of about 1.2 million, has the only such registry to serve the more than 400 million Arabs worldwide.
In a recent telephone interview, Drs. Israel and Bishara told me more about the registry, its successes and challenges, and their goals for the program.
Dr. Bishara, an Israeli Arab, has visited over 90 Arab Israeli villages, educating people about how bone marrow transplantation works and why different ethnic groups need to be well represented in the donor pool.
She recounted her recent visit to a Beduin village near Beersheva, the first time a donor drive had ever been conducted there. She explained to villagers that the inability at times to make a match for Arabs was not due to racism, but simple genetics. The greater the number of donors in the registry, the greater liklihood there is of finding a suitable match. Dr. Bishara said that once people understood this, they were eager to participate.
She also cited social media sites as being invaluable in getting large turnouts for donor drives. “The response via Facebook has simply been amazing”, says Dr. Bishara, “We ask for fifteen donors to show up and we get thirty.” Donors are motivated to help those within their own community, but know that in order to be in the registry, they must be willing to donate to anyone in need who is a match.
The statistics for such a young program are impressive. Fifteen thousand Israeli Arabs are part of the registry. To date, sixty-five genetic matches have been found between Israeli Arab donors and patients in Israel and abroad. Eleven of these have already donated their bone marrow, and most of the transplants were successful.
When asked to share a particularly memorable case, Drs. Israel and Bishara told me about the case of Muhamed, a five month old infant, born with immune deficiency, whose brother had already died of the disease. A match was found for him within the registry, and it was a success.
Says Dr. Israel of the act of donating, “It is such an altruistic thing that I have no words to describe it.” Muhamed, now a toddler, met his donor at a reunion held recently at Hadassah Hospital. Photos here show 18 month old Muhamad with his donor Maharan, age 21, and Maharan’s mother. Also at the reunion were eight-year-old Hala with her donor Muhamad Azzam. Drs. Israel and Bishara sent me these moving photos, following the reunion, which took place just a few days after our phone conversation. Dr. Bishara commented, “This was a very moving occasion. We are all grateful to the donors, who opened a possibility for new life for people they did not know at all.”
The work is not without its challenges.
Dr. Israel noted the prevalence of genetic disease in Arabs due to the high rate of interfamily marriage. Finding a donor in a timely way is essential, and that requires a bigger registry. Thanks to education and outreach, awareness of the need for donors is growing; funding such growth is the biggest challenge now. The registry is supported by the Kahane Foundation in Austria and Hadassah Austria. It costs $50 per donor to do the tissue typing work, plus other costs in maintaining the registry.
One of Dr. Israel’s goals is increasing not only the number of donors, but broadening the ethnic diversity of the registry. The more that each ethnic group participates – Beduins, Arab Muslims, Arab Christians – the greater the chance of a match. This objective extends to Jewish Israelis too. The “melting pot” effect- marriages between Ashkenazi, Sephardi, Mizrachi, and more, create new ethnic mixes with unique genetic combinations. Ultimately, the goal is a registry with 50,00 donors.
I asked both doctors why they think that theirs is the only Arab bone marrow registry in the world. Why had none of the Arab countries, at least the wealthier, oil-rich countries, established such a program?
They explained that in many places, the medical establishment still relies on finding a donor within the family, and lacks the research that shows that 40% of the time a match within the family cannot be found. Furthermore, bone marrow transplantation is a costly procedure, not available everywhere. And some transplant programs simply are not yet using unrelated donors. Both doctors were gratified by the recognition their program received from Saudi journalist Fawaz Al-‘Ilmi
, writing in the Saudi daily Al-Watan. Dr. Bishara remarked at the end of our conversation, “The registry is open for people all over the world. It is a beautiful example of world cooperation.”
Less than 1% of the world’s Arabs live in Israel, and yet this Israeli hospital is prepared to offer a lifesaving bone marrow match to Arabs everywhere.
Indeed, it may be the last and best hope when no matching relative can be found.
That is something to be proud of, and worth remembering the next time you hear Israel characterized as a racist, apartheid state.