From Huffington Post
An Update From the Second Annual Society of Adolescent and Young Adult Oncology’s (SAYAO) Conference: Breaking Barriers in Acute Lymphoblasic Luekemia (ALL)
By Emily Drake, Health promotion specialist, researcher, advocate
I had the fortune this past October to attend the second annual Society of Adolescent and Young Adult Oncology (SAYAO) conference at the University of California, Irvine (UC Irvine) in partnership with the Hyundai Cancer Institute at CHOC Children’s and SeventyK. This year, the conference, titled “Breaking Barriers in Acute Lymphoblastic Leukemia,” focused, as the name implies, specifically on all aspects of acute lymphoblastic leukemia (ALL). It looked at the impact of the illness from the macroscopic level: How many people get it? What populations is it seen in? Does how the illness presents itself in the US population differ from other countries? It also focused on how ALL is diagnosed and how new science may impact the delivery of care to those living with it.
Last year at the inaugural SAYAO conference, the program focused on a general overview of the psychosocial issues of adolescents and young adults (AYA) living with cancer. Four diseases were used as a backdrop to explain why these issues are important. SAYAO was envisioned and developed by Dr. Leonard Sender, Director of Pediatric, Adolescent and Young Adult Cancer Programs at CHOC Children’s Hyundai Cancer Institute and UC Irvine Health’s Chao Family Comprehensive Cancer Center. Dr. Sender told me that after last year they decided that they “needed to get into much greater detail about a particular disease in order to try to understand why there are survivorship disparities for the AYA population”. Meaning, why do we see different outcomes for AYAs diagnosed with type X form of cancer compared to the outcomes we see of older adults or children diagnosed with type X. This year ALL was chosen because it is considered to be the prototypical disease of AYAs. The conference was small in design in order to facilitate higher order discussions amongst experts in the field. Two hundred and fifty people attended the sessions over three days, including 60 invited speakers and delegates. Plenty of time was allotted for questions and answers in order to generate academic discussions.
Generally after plenary talks at other conferences, professionals disperse and go to different rooms to talk about their specific area of interest. What was unique about this conference was that it brought together pediatric providers, researchers, biologists and clinical trial experts with experts from the adult field. Those specialists sat in the same room for three days and discussed on the same stage unique issues around ALL care delivery and treatment. Dr. Sender said that this unique approach allowed for discussion about ALL to be in terms of its biology rather than the age of the person who is diagnosed (e.g., pediatric, AYA, adult or geriatric). This aspect of the talks was driven by the fact that around the time of the conference, the New England Journal of Medicine featured the groundbreaking work of Dr. Charles Mullighan of St. Jude’s Children’s Hospital that showed there is a new sub-type of ALL called Philadelphia-like. Due to its biology, this sub-type of the illness has shown that is has a worse outcome compared to others, something that delivery of care cannot correct. Dr. Sender stated that this is important because up until that time the AYA movement was blaming poor outcomes among AYAs with ALL entirely on someone going to the wrong institution or receiving the wrong version of treatment. What this discovery means is that the biology of the illness is a very important differentiator in this group of patients, rather than the patient’s age alone or site of treatment or regimen chosen.
What this discovery means is that the biology of the illness is what differentiates this group of patients, rather than the patients’ ages. It is the biology that needs to be addressed both scientifically and therapeutically. Otherwise, advances for this population will not occur. However, this discovery now presents new questions: How does this influence how ALL is treated at the patient’s bedside? What are the treatments for this new sub-type? What are the barriers to addressing this new finding from the hospitals’ and laboratories’ perspectives? The talks focused around all stages of cancer care from the point of diagnosis all the way through to survivorship, looking at the long-term consequences of having had leukemia and its treatment. It also looked at how other countries are addressing these challenges. Dr. Adele Fielding spoke about the United Kingdom’s perspective. There were also the Italian, New Zealand and Australasia perspectives.
Moving forward, SAYAO is going to continue to run disease specific conferences. They want to continue to foster these academic discussions around other cancer disease types. They want to explore what is common for a specific disease in people of various ages and what the differences are in regard to how the disease presents itself biologically. However, it is important to the society that the patient is always the central focus of discussions. What particular treatments and models of care delivery mean to the patient need to be considered. Dr. Sender hopes that the post-conference work being completed will continue these discussions in a way that has not been done before. While a number of questions remain unanswered, the discussions have started, and this leadership group who came together can now work together to find solutions. The next stage of AYA advocacy from the scientific standpoint is here. Scientists like Dr. Sender are going beyond just identifying which diseases exist in the AYA population – something we should all be excited about.
