publication date: Jun. 1, 2018
Conversation with The Cancer Letter
AU Beirut’s Saab: Kids in the region now have access to treatment similar to Western countries
Acting director of the Children’s Cancer Institute, and director of the Pediatric Cancer Research Program at the American University of Beirut Medical Center
Patients who come to the American University of Beirut Medical Center and the Children’s Cancer Center of Lebanon now have the same chances of cure, thanks to systematic program building over the years, said Raya Saab, acting director of the Children’s Cancer Institute, and director of the Pediatric Cancer Research Program at the American University of Beirut Medical Center.
“Since the start of the refugee crisis since 2011, we started having an influx of patients, refugees who have moved into Lebanon—kids from Syria who lack access to the correct treatments or to available treatments,” Saab said. “We also have been getting more and more patients from Iraq, because of the lack of available treatment for children with cancer.
“It’s quite exciting now in the next phase of the plans for St. Jude with the global health program to really extend the collaboration to the whole region, rather than just Lebanon and a few others, in order to impact the largest number of patients.”
Saab spoke with Matthew Ong, a reporter with The Cancer Letter.
What’s your role at the Children’s Cancer Center of Lebanon?
I’m currently the acting director of the Children’s Cancer Institute and the director of the pediatric research program.
I’m a graduate of the American University of Beirut. I did my undergraduate studies and medical school there, so it’s my alma mater, and then I came to the States. I did my residency at Duke University and then my fellowship at St. Jude Children’s Research Hospital.
When I started my fellowship, the Children’s Cancer Institute was just starting up. I was in fellowship during the early years of the institute in Lebanon. I traveled back and forth and it’s very tough to not want to be a part of that, especially since the idea of being able to treat kids while also being at a center where you can alleviate the cost of care from the families and just focus on that—that’s additionally attractive.
Also, being a pediatric oncologist practicing standard-of-care medicine in my hometown and my alma mater is a dream come true. That’s when I decided to go back, and since then, we’ve really been growing quite fast. We have recently, since 2012, started a regional collaboration with St. Jude as part of their global mission as well to improve access to care and improve the pediatric oncology treatment in the whole region.
We started a regional network, called POEM, Pediatric Oncology East and Mediterranean Group, which includes doctors from around 72 centers in 23 countries that span from Morocco to India and includes the Middle East and North Africa.
Together, we are forming a platform through the POEM group to be able to improve the standards of care in the region in pediatric oncology, and we’re partnering very closely with St. Jude to do that. The central office of the POEM group is at the Children’s Cancer Center in Lebanon and it’s really been growing very nicely.
We have several projects to train nurses in pediatric oncology in the region, educate health care providers and we’re currently developing a project to improve access to diagnostics, imaging, and pathology. There are a lot of exciting developments.
What’s the situation in Beirut like right now for your cancer center, in terms of the refugee crisis?
The cancer center was started in 2002, and at that time, the majority of patients that we saw were primarily Lebanese. We saw a few patients from the region, Palestinians, Iraqis, Syrians, and others.
Now, since the start of the refugee crisis since 2011, we started having an influx of patients, refugees who have moved into Lebanon—kids from Syria who lack access to the correct treatments or to available treatments. We also have been getting more and more patients from Iraq, because of the lack of available treatment for children with cancer.
Since 2012, we started this initiative with St. Jude as a humanitarian response to the crisis in the region and we allocated separate funds for displaced kids with cancer. We just recently published our review of the steps that we put in place, the cost of care, and the magnitude of the crisis over the past few years.
We have been able to, in collaboration with St. Jude and the Children’s Cancer Center of Lebanon Foundation to help probably around 40 percent of kids who come to us who are displaced—whether Syrian or Iraqi. We have had to prioritize so that we can treat only patients with new diseases rather than recurrences or previously treated patients.
And we have tried to focus on treating the largest number of patients. We have been trying to avoid accepting patients for things like bone marrow transplant—the really expensive treatments with a lower rate of cure.
So, this has been going on since 2012, we have so far have had three successful funds for those kids, and currently, the number of patients that we see at our cancer center, almost 25 to 30 percent are currently non-Lebanese, because of the regional crisis.
This has caused us to have to expand our infrastructure, both in the outpatient and the inpatient setting to keep up with the influx of additional patients.
This might seem like a rhetorical question, but could you describe what it’s like for children with cancer and their families in a war and refugee crisis?
You can really imagine, the families have a lot to deal with other than the child with cancer as well. A lot of these families do not have the means—the majority of these families live in the outskirts of Lebanon, in the peripheral areas, and the transportation can be expensive for them.
They usually have very limited social support, because they don’t have a lot of extended family members who can help take care of the other kids, for example, if the kid is at the hospital or being treated for cancer.
Since the Children’s Cancer Center started, we’ve had very low rates of abandonment, and we’ve had to put a lot of effort and extra social resources to prevent abandonment in this population, because you have so many other stressors, and sometimes you hear patients’ parents make that decision, how much resources to put into treating this one kid, when they have siblings who are at home and they need parents who are working so they can provide for them.
It’s a difficult situation. We’re lucky at our cancer center—with the support of the Children’s Cancer Center Foundation, social work services, Child Life Services, for those families, sometimes you can have accommodations as well close to the hospital for a specific period of time.
But, there’s definitely many more barriers, more stressors to those families, because of the displaced status, the lack of support, the lack of other family members around, and the lack of a stable social situation and stable jobs.
Just making sure I get this right—does the cancer institute completely cover the cost of their care?
Yes. The Children’s Cancer Center of Lebanon, when it was initially established, it was set up after the example of St. Jude Children’s Research Hospital in Memphis, Tenn. The idea was that no family would pay out-of-pocket expenses, and the same applies, whether the child is Lebanese or non-Lebanese, irrespective of their nationality, social status, or third-party payer, or the availability of insurance or governmental coverage.
Our Children’s Cancer Center Foundation covers financial costs of treatment for all accepted patients through fundraising. Since the refugee crisis, additional funds were allocated through a collaboration by St. Jude for the humanitarian response. We cover all the treatment expenses as well as outpatient medication—anything that’s related to cancer care. Because we do that, we have had to create the criteria for acceptance for newly-diagnosed diseases at a limited number per year. We have been able to help around almost half of the kids who come to us.
As you said, St. Jude and the CCCL have been working together since 2002. How did this partnership begin?
Actually, the founder of St. Jude, Danny Thomas, is of Lebanese descent, and it was always his dream to have something similar to St. Jude in Lebanon. After he passed, the American Lebanese Syrian Associated Charities board decided to honor his wish and look into this possibility of something similar to St. Jude in Lebanon, and that’s when they came in 2000 to look at the possibility of having a hospital like that.
That resulted in the partnership between St. Jude, ALSAC, the American University of Beirut, and the creation of the Children’s Cancer Center Foundation of Lebanon, which will be the fundraising body for this cancer center. These four parties together then formed the Children’s Cancer Institute, which I’m the director of currently.
Ever since it started, the institute itself is a collaboration among the four entities. St. Jude’s input is an integral part of the Children’s Cancer Center, which is located and run by the American University of Beirut.
What is the annual budget for the collaboration? How much is St. Jude contributing, and how much is the CCCL providing?
It depends. The partnership with St. Jude is programmatic. We have multiple programs, including patient care and humanitarian response, and the POEM group. Each one has its own separate budget, so the budget varies from year to year, but generally the contribution from St. Jude probably falls around 20 percent or so of the total budget for specific programs.
The rest comes from local fundraising by the Children’s Cancer Center of Lebanon.
Is your budget and focus in this partnership split into separate programs for non-Lebanese or refugee children vs. Lebanese children?
For the general programs, we did not have a separation. Because of the magnitude of the humanitarian crisis, we realized that we had to have a separate fund for non-Lebanese children for two reasons:
First, to make sure that we have earmarked funds that we can actually utilize to best serve this particular population, and second, so that we do not, at the same time, affect the mission of treating the kids with cancer in Lebanon. This is so we can maintain the same relative amount of treatment for Lebanese kids, because that’s our area of catchment, and at the same give the needed support for the non-Lebanese kids with cancer.
So in summary, since the start of the humanitarian crisis, we have earmarked some funds, but for particular disease-specific programs, those are still accessible to all kids irrespective of nationality.
How did the collaboration with St. Jude’s international outreach arm transform your hospital?
Our collaboration with St. Jude started since right from the beginning of the establishment of the cancer center. Before that, children with cancer were treated in the general pediatric ward, the medical services were all there, but they were not in a multidisciplinary cancer center setting. That’s really the major difference as a result of the collaboration with St. Jude and the establishment of the Children’s Cancer Institute as a separate physical structure and the creation of a multidisciplinary patient-centered service.
Since then, the different initiatives that have been developed in collaboration with St. Jude Global have served to strengthen multiple components of the program. We recently started the first pediatric neuro-oncology program in the Middle East region. We have multiple disease-specific programs that were also developed throughout the years through the collaboration with St. Jude through the outreach global department with training of personnel and the transfer of technology.
More recently with the global outreach programs, the regional impact of the children’s cancer center has also increased to be able to transfer the expertise to areas in the region that need that as well.
All through the development of the Children’s Cancer Institute, there has been continuous milestones that have been achieved through the collaboration with St. Jude.
How did Children’s Cancer Institute change care for children with cancer?
Prior to the Children’s Cancer Institute, the care for kids with cancer was very fragmented. We did not have any data or information on what was being done right, what needed improvement, and what were the outcome numbers. And now, kids in the region can get access to treatment similar to what they would in the Western developed countries with similar cure rates, for the most part.
It has definitely made all the difference through the collaboration, and through this systematic program building over the years, we have reached a point where a family who has a child with cancer can be comfortable that their kid has the same rates or same chances of cure irrespective of where they are in the world, because they have access to the correct treatment modalities.
The hope is that a similar pattern of transfer of expertise will occur in the region as well, and fundraising and the ability to cover the cost of care through private NGOs, because I think that’s a model that will be adopted in a lot of the developing countries and the countries in the region due to the lack of appropriate government-led health plans for cancer.
You and your colleagues recently completed a study, finding that over six years, a majority, in fact, 58 percent of your patients who are displaced children have completed treatment and are in remission. Is this unprecedented, especially in the region?
Correct. That’s in addition to the number of patients who were already on therapy and in remission. For displaced kids with cancer who were treated at our center, the numbers who went into remission and ones who achieved remission at the end of treatment is very similar to those of Lebanese kids, which very closely approximates the numbers that are reached in the Western world.
Now, we don’t have a lot of follow-up for these displaced children after they finished treatment, because due to the limited earmarked funds, we have decided to just cover the initial treatment for the children, so we have not been following up after end of treatment.
Now, you would anticipate that if somebody had recurrence or relapse, they would come back to us to let us know and for the planning, but we cannot be sure what happens to those kids after they finish treatment. But, at the end of treatment, the response rates have been very similar to what we see in Lebanese kids, and the major reason for that is, despite the social situation and the displaced status, they have been able to continue all through treatment, we have very low abandonment rates, and a good support structure, at least within the center.
What’s your average day like at CCCL? You mentioned having to expand the infrastructure to accommodate the influx, but are your clinics still generally at capacity because of the refugee crisis? And do you ever have to turn away patients?
So we have increased our capacity from around 70 patients a year to currently about 120 new patients a year. That’s really increased quite a bit, and this is since 2012. And to do that, we have had to increase the capacity in the outpatient and inpatient facilities.
We definitely do have to turn away patients due to a lack of capacity to treat them, both physical capacity as well as financial. This is the reason why we probably turn away about half of the patients that we see, for the displaced population.
Patients who need BMT, for instance?
Exactly. Or those who have received prior treatment somewhere else or who have recurrence disease after therapy. Occasionally, we also have to turn away patients with newly diagnosed tumors, even if they are curable, just because of the lack of capacity or projected funding.
So, we’re definitely still not able to meet all the needs. If you look at the number of refugees in Lebanon, I think the published numbers by the UN are a little bit of an underestimate. We do go into that in our paper, because there was a point after 2015 where there was no more registration, so the UN was not registering refugees anymore. And then, you have all the new children who are being born in Lebanon—a lot of those are not registered either.
It’s estimated that the number of displaced kids in Lebanon approximates the number of Lebanese kids, because its skewed towards the younger population. So, we expect that there’s a large proportion of kids with cancer that we are not capturing, and I’m not sure where those people are going.
What would you say is the most important takeaway from this collaboration over the past seven years?
I think it’s very clear that you can achieve a lot of impact at the individual level of a child with cancer as well as at the general population level, by having the correct and committed partnership between academic medical centers, NGOs, and leading medical centers in the Western world.
That impact is really quantifiable, it is possible, and it is something that can be exported to other areas and other regions. But, it does require commitment, it does require a plan, and it requires metrics and quantification so that you can set up a model or a pathway and reassess periodically to figure out what’s working and what’s not, and where you need to put in more resources.
But, this can probably also be applied to other diseases other than cancer, and it’s always a good bet to focus on pediatric condition, especially those that are curable, because at the end of the day, this is the future of the population, and you will gain so much even at the population level in terms of years of productivity, and at the same time, giving a chance to those families to access care that they would not be able to access otherwise.
I see that St. Jude and ALSAC have launched a similar effort in Jordan—are they seeing similar results there, so far?
I know that in Jordan, they have focused also on addressing the humanitarian crisis. I have not seen numbers regarding results there, but I do know that without that partnership with St. Jude, it would be difficult to address a lot of difficulties that they are facing that are similar to those in Lebanon.
Did we miss anything?
No, I think that’s it. It’s quite exciting now in the next phase of the plans for St. Jude with the global health program to really extend the collaboration to the whole region, rather than just Lebanon and a few others, in order to impact the largest number of patients.
We’re looking forward to being a part of that, specifically through the POEM platform, to try to get people together and leverage the change that is possible in the region.