Abstract
Two very exciting new entities were created in 2012. The first is the natural evolution of the LIVESTRONG Young Adult Alliance. The Alliance started with humble beginnings by bringing together advocates, oncologists, and psychosocial scientists to create an implementation plan for the 2006 recommendations of the joint National Cancer Institute (NCI) and LIVESTRONG (formerly Lance Armstrong Foundation) Progress Review Group (PRG), largely recognized as the major launching point of the AYAO movement in the United States. The Alliance came to an end with the 2012 conclusion of the 5-year implementation plan, but from it evolved Critical Mass, a new independent organization. In November 2012, more than 100 AYAO advocacy group representatives and healthcare professionals involved in AYAO medicine and biobehavioral sciences attended the first meeting of Critical Mass in Atlanta.
For many years, we in the United States have watched the exciting work done by the Teenage Cancer Trust (TCT) in the United Kingdom, and as a journal we have highlighted aspects of the work that has been accomplished by TCT. In the fall of 2012, it was announced that a nonprofit organization was being formed in the United States by Roger Daltrey and Pete Townshend of The Who, two of the most recognized supporters of the TCT. Teen Cancer America (TCA) was founded to create American versions of the successful TCT units. TCT has created the only standalone teen and young adult oncology hospital units for patients aged 13 to 24. These units allow patients to find a home where they can get appropriate and age-related treatment for their malignancies. TCA's impetus to spark discussion and debate and raise the funds necessary to begin implementing American-based units is a very exciting development.
As long as there has been discussion of adolescents and young adults with cancer, there has been debate as to what the lower and upper age limits of this population should be. As a journal, we have been clear in saying that while there is no one right answer to the age range question, there is always a need for further discussion about this. Indeed, in JAYAO's first issue, this was highlighted in a Controversies piece that I encourage everyone to read. 1 In the United States, we tend to use the standard of 15–39 set by NCI. While the age range used for AYAO varies by country and research group, all other age ranges used have lower age limits more in line with the traditional beginning age for teenagers, generally 13. There are constant reminders that there will never be just one answer to the question “What should the age range be for AYAO?” Examples of this include the introduction of TCA and its standard 13–24 age range used by TCT, along with the passage of the United States' Patient Protection and Affordable Care Act (PPACA; commonly referred to as “Obamacare”) and its key component, raising the age that young adults can be covered on their parents' health insurance up to the age of 26. Any answer will always be dependent on the context being considered (biology, treatment, psychosocial, or otherwise) and impacted by many factors, including changes in medicine, healthcare financing, and public policy.
Regardless of the exact age range discussed, the bottom line remains that AYA-aged patients and survivors continue to be a group whose voice and needs are not fully addressed by either the pediatric or adult cancer communities, and for them the very important work of this journal is critical. The ability to understand not only the delivery of care to these individuals, but also their potential differences in biology, treatment, and psychosocial impacts continues to drive the ultimate goal and purpose of JAYAO—to stimulate academic debate, distribute knowledge, and foster positive changes for this group.