You've heard it a thousand times before, I'm sure: "United we stand, divided we fall." And since this week is National Young Adult Cancer Awareness Week (NYACAW), those words keep ringing in my ears. They probably qualify as a cliché now, but just because they're overused doesn't make them any less true.
The power of community is undeniable. Whether one is the patient or the family or the friend or simply a citizen of a world in which cancer kills, we're all in this together. And when it comes to young adult cancer, community could not be any more paramount.
Unfortunately, young adults with cancer are about as fragmented as a population can get. They exist in the grey. Over 15, they are no longer children and yet they may have a cancer that traditionally presents in children. They are adults, but their cancers, their issues, their needs and, quite possibly, their biology differs from those of patients over 40.
As a young adult cancer patient, you are always the odd man out, whether you are being treated in a center that focuses on pediatric patients or adult patients. You may face any or all of the following: low clinical suspicion, delayed diagnosis, no peer support, no age-appropriate support services or resources, no fertility information, no clinical trial options, and no clues as to how this experience could impact the rest of your life.
One hospital or practice might only see one or two young adult patients a year. And those two may never cross paths. But those two people are actually part of a sizable population when you step back and take a national look -- nearly 70,000 patients diagnosed every year between the ages of 15 and 39. That's a large enough group to deserve closer investigation into just how unique they are, from their fertility status to their molecular makeup.
It's all about perspective.
When a group is united, research can be done, solutions can be found, strides can be made. It's when the group is divided that the vision becomes blurred. "United" is the perspective that leads to better research, better care, better programs and futures for young adult survivors. Outliers are not outliers once you unite them -- 70,000 strong! -- under the banner of their shared characteristics instead of shattering them across their differences.
Fortunately, on the individual level, young adult patients are managing to come together, support each other, and build community with the help of dedicated health care providers and organizations such as Stupid Cancer and Imerman Angels, which exist to ensure that no young adult patient has to go through their experience in isolation. Those organizations, along with many other amazing groups, have come together as part of the larger Critical Mass community to call for broader change because we all believe that we can go farther, faster, together.
But coming together as a community is just the first step towards radically changing a system that makes young adults simply an anomaly in the waiting room. Truly uniting means building bridges. Collaborating. Sharing information. Reaching across the divides of pediatric/adult, community/academic, this cancer/that cancer, and focusing on the simple question, "What is the best solution for the young adult patient?" -- not as an afterthought, but as the only thought.
When we are a truly united community -- where all stakeholders are committed to a shared cause, and equipped with the right tools and the right platforms -- we will be able to do the research, gather the data, identify appropriate treatments, provide needed services, and raise the standard of care and quality of life for young adults with cancer. Only then will we overcome the fragmentation and silos in the health care and research systems that are the root causes of disparities in care for young adults with cancer.
"United we stand." Cliché or no, this week in particular, I like the sound of that.
Follow Heidi Adams on Twitter: www.twitter.com/heidisa