THE BLOG
11/25/2013 05:09 pm ET Updated Dec 06, 2017

Are You In?

2013-11-23-photoCritical2013Imin2group.jpg

You know what it's like when you work so hard in advance of something big and important in life -- a wedding, your first kid, a new job? And then you're in the middle of it and you think, "Oh man, this is so much better than I thought it would be!" I felt that way all week during the Critical Mass Annual Conference in Cleveland recently, surrounded by people I respect, admire and rely on who share my driving passion: creating a world in which young people affected by cancer survive and thrive.

The occasion was the annual gathering of oncologists, social workers, nurses, patient advocates, government stakeholders and researchers at the Critical Mass Annual Conference. It was the first one under my belt as the new CEO and, with the help of an incredible volunteer planning committee, we spent months building out an agenda we believed would be informative and useful, focusing on key issues in the area of AYA oncology: healthcare reform, the evolution of programs and partnerships to serve young adults, and a look at overall progress of the AYA movement.

Perhaps most important, however, was the rollout of a new strategic plan and vision for Critical Mass, signaling the final step in our transition into an independent organization separate from the LIVESTRONG Foundation, where it had been conceived and incubated since 2006.

As Critical Mass comes into its own, this conference was an opportunity to encourage attendees to recommit to each other as a community, and to the shared efforts spearheaded by the new organization to move the field forward in a coordinated and productive fashion.

Together, we committed to a new vision and path forward, beginning with the creation of a platform that consolidates all AYA-specific resources, services and programs for easy access by patients. The long-term vision -- ambitious and idealistic, for sure -- is to create an AYA cancer registry that will capture the nearly 70,000 young adults diagnosed with cancer every year, so that we can listen to them and learn from them. The registry will serve as THE data resource on this age group, providing the missing evidence to support and inform our strategies to improve the lives of adolescents and young adults with cancer.

We have our work cut out for us. While it has been nearly 20 years since my own diagnosis as a young adult and much has changed, too much remains the same, and we still have too little hard evidence, both to clearly define the problems and validate the proposed solutions.

Adolescents and young adults (AYAs) face profoundly different medical and personal challenges than pediatric and older adult patients. Physical effects aside, we encounter compromised fertility, financial hardships and the fact that our careers are often defined by what jobs come with insurers who will cover us.

And that's not the half of it. Survival rates for young adults have plateaued since 1975. The causes are varied -- lack of insurance, knowledge gaps about AYA cancer biology, delayed diagnoses and a lack of participation in clinical trials are all thought to be part of the problem, although we can't say for sure because of, again, a lack of data.

Surprising, right? Cancer data is abundant, if you're looking for information on a particular type of cancer or incidences in a particular region, for example. But data about characteristics, needs and outcomes for this age group in particular are limited. And the absence of that data is the single biggest barrier to progress.

We have a big vision, and we will need every bit of help we can get. Most importantly, we will need participation -- from hospitals, cancer centers, social workers and patients themselves. Join the Critical Mass AYA community by signing up for updates here. We'll keep you up to date on our progress and, down the road, will provide tools and resources to help spread the word about the resource platform to patients and, subsequently, the registry.

The Annual Conference was a milestone moment in time. The nearly 200 attendees were living, breathing evidence that, at a certain point in time, everyone had a fundamental realization that we can go farther, faster together than alone. And the most exciting part of the conference for me was seeing visible evidence of everyone's renewed commitment -- to each other and to the movement.

It's a new day, a new direction and together we can do great things. So I pose the same question here that I did at the meeting, and I hope I can count on your answer in the affirmative:

ARE YOU IN?

Photo via Heidi Adams