Twenty-one-year-old Peter Dagher has a rare type of leukemia, a form of blood cancer, and he needs a donor of hematopoietic stem cells (often referred to as bone marrow) for the treatment of his life-threatening disease.
Members of his family don’t match and nor do his friends, and Lebanon does not have a national registry where he could look for a potential donor.
Peter is not alone. The American University of Beirut’s Medical Center (AUBMC) comes across five to six patients a year in need of a such a procedure. Beirut’s Makassed Hospital currently has three patients anxiously awaiting a life-saving donor.
With the absence of a registry where Peter and others like him can search for registered donors, they are left with two options: continue to ask people around them to undertake tests to see if they are a match — with each test costing between $300 to $470 — or reach out to international registries where chances of finding a match are even slimmer.
“We turned to registries in Europe, the United States and around the world, but finding a compatible donor from outside of Lebanon is difficult. Doctors told us that if the matches found abroad [which were not 100 percent compatible] were from the same country or region, they would have done the transplant. We need a national registry,” says Randa Dagher, Peter’s mother. By not having a national registry, the opportunity to connect potential donors and future patients is lost.
Stem cell donation
Hematopoietic stem cell therapy is commonly known as a bone marrow transplant. These stem cells, the parents of all our cells, are found in their greatest abundance within bone marrow — the soft and fatty tissue that fills bone cavities. In the past, hematopoietic stem cells could only be collected from bone marrow via painful hip punctures. Now, medical advances mean the cells can be taken from the blood in a procedure called peripheral blood stem cell donation. (The centers that conduct the procedures are still named after the original procedure: “bone marrow transplant centers.”)
Whether harvested from bone marrow, umbilical cord blood (another rich source of stem cells) or peripheral blood, the transplant does not involve surgery, a persistent misconception. The procedure is similar to a
Although it is more complicated than going down to the Red Cross to give a pint of blood — it involves more testing, a few days of preparatory injections and a more intrusive machine — the simplified procedure has increased the popularity of stem cell donations in the past couple of years, increasing with it the likelihood of saving lives.
The two basic forms of transplants are autologous and allogeneic: the former makes use of a patient’s own stem cells and the latter uses cells from a donor of a matching type. The first hematopoietic stem cell transplant in Lebanon was autologous. It was performed at Makassed Hospital in 1997, 29 years after the world’s first truly successful attempt.
In Lebanon, three hospitals — AUBMC, Makassed Hospital and Mount Lebanon Hospital (MLH) — conduct hematopoietic stem cell transplants. AUBMC and Makassed both have their own dedicated units where they conduct both autologous and allogeneic transplants. MLH only performs autologous transplants.
The majority of Lebanon’s transplants take place at AUBMC, where a total of 84 were performed in 2012, up from 45 in 2011.
Dr. Ahmad Ibrahim, head of the bone marrow transplant unit at Makassed Hospital, estimates that around 120 transplants were undertaken in the country last year.
When a patient and their family are not losing sleep over the life-threatening disease, they are fretting about the hefty cost of the transplant. For an autologous transplant, prices vary from around $35,000 at MLH and Makassed to between $40,000 and $45,000 at AUBMC. When a donor is needed, the cost increases to $55,000 at Makassed and $75,000 at AUBMC. Currently Lebanon’s Ministry of Health only covers a small percentage of the costs of hematopoietic stem cell transfers.
When the donor is unrelated to the patient, additional medical needs push the cost even higher, to some $120,000 at AUBMC, the only hospital conducting such a procedure.
AUBMC performed Lebanon’s first transfer from a donor who was not related to the recipient in September 2011. The donor was found on the registry of the United States’ National Marrow Donor Program (NMDP), the world’s largest registry, and the stem cells were sent to Lebanon.
A match made in Lebanon
A donor’s compatibility is determined by testing for the human leukocyte antigen (HLA), a test of genetic markers on white blood cells. The chances of finding a perfect match is highest among siblings.
“The [head] of the laboratory sits with the family, draws the family tree and starts proceeding with tests within the family,” says Samar Okaily, nurse manager of the bone marrow transplant unit at AUBMC. When siblings and members of the family don’t match, then the probability of finding a match is higher among fellow Lebanese and Arabs. Still, finding one in Lebanon or even the Middle East is a Herculean task.
Besides Israel, there are only three countries in the region that have a bone marrow registry: Iran, the United Arab Emirates and Saudi Arabia. According to the Bone Marrow Donors Worldwide (BMDW), an aggregator of data from worldwide registries, Iran has around 5,000 registered donors, the UAE has just 45 and Saudi Arabia’s registry, established in 2011, is not even listed on the BMDW.
Donors from the Middle East account for a negligible 0.02 percent of the total 21 million registered potential donors on the BMDW, an alarmingly low figure. The US, with a population size close to the Middle East’s, accounts for over 35 percent of the registered donors.
More procedures, but still no registry
Dr. Ibrahim of Makassed Hospital, which has conducted over 400 transplants since 1997, says there are several reasons for the lack of a registry. First, the transplants have been around for just 15 years in Lebanon as opposed to half a century in some developed countries. Second, “in our population, families were big so you had a higher chance of finding a compatible donor among your siblings than in developed countries. As families have become smaller, there is a bigger need for a registry.”
Finally, and most importantly, Ibrahim believes economic and legal challenges have hindered the development of a national registry. “It needs money so the [stem cell] tests can be done for free, and it needs the [adequate] legal system to protect the donors’ [anonymity],” says Ibrahim, who estimates that it would cost a minimum of $3 million to establish such a registry in order to conduct the tests for free and raise awareness about stem cell donations.
Dr. Fadi Nasr, who heads bone marrow transplants at MLH, blames the lack of a national registry on egos. “We disagree on [which doctor] will put his name on it; it’s politics,” he says, explaining that different hospitals are reluctant to share data with one another in order to establish a national registry. And with no law imposing such collaboration, he does not foresee the establishment of a registry in the near future.
Globally, more than 1 million blood stem cell transplants were performed as of the end of 2012, a medical procedure used in the treatment of over 70 diseases
Lebanon’s medical system is gearing up for an increasing number of transplants, with two of its leading hospitals planning to start performing more complex procedures in the near future.
When the European Group for Blood and Marrow Transplantation, a non-profit scientific forum, held its 2013 annual meeting last month, Dr. Ali Bazerbachi, who heads the bone marrow transplants unit at AUBMC, and Makassed’s Dr. Ibrahim were both speakers on high impact panels.
As Lebanon commits to saving lives with more complex hematopoietic stem cell procedures, it is critical that it provides a registry for patients in need of an unrelated donor, such as Peter. Without one, his life is at risk. “I want a donor now,” his mother told Executive. “I don’t know what to do”.