According to the National Cancer Institute, about 69,212 adolescents and young adults (AYAs) were diagnosed with cancer in 2011 – this is 6 times the number of cases diagnosed in kids who are 0-14 years old (National Cancer Institute, 2014). This makes it kind of obvious that it’s important to have cancer centers dedicated to providing quality care that meets the range of specific needs of AYA patients.
However, as of 2014, only 2 cancer centers in the US were designated as Centers of Excellence in AYA Oncology by the Health Care Rights Initiative Change it Back Centers of Excellence Program. Why does this matter? Well, the program accredits a cancer center, hospital, or clinic as a Center of Excellence for AYA oncology based on 5 program criteria: fertility counseling, health insurance and financial counseling, clinical trial education and facilitation, psychosocial support, and transition to surveillance and survivorship services. According the the HCRI website, “To receive a Center of Excellence designation, a cancer center, hospital, or clinic must directly provide and/or facilitate ….” these services.
I was recently invited to become a member of the Adolescent and Young Adult Cancer Council, a part of Duke Hospital’s Pediatric Oncology department. Duke is beginning to design and build a cancer program specifically for adolescents and young adults. While this is incredibly exciting, and I am honored to be a part of this program development, the only reason I was invited to become a part of the council is because I saw an article announcing the mission to start the program, then personally reached out to the oncologist who is the director of the pediatric oncology department there and is leading the AYA program development.
That’s why I wanted to write this post. As AYA cancer patients and survivors, we have an opportunity to make change by reaching out to our hospitals and clinics. Staying tuned in to the workings of the cancer programs in your area can provide you the opportunity to get involved and make a difference. Having participated in my first AYA Cancer Council meeting with Duke last week, I can honestly say the experience is incredibly fulfilling. Being able to talk with other patients as well as doctors, nurses, and social workers facilitates discussion about really important issues – from how to have the fertility discussion with young patients to whether it’s necessary to have a physical meeting space for AYA patients in pediatric and/or adult oncology clinics – is a fantastic first step towards designing a program of care that is tailored to the AYA cancer experience.
So, to all the AYA’s out there and their family members, I encourage you to get involved with your cancer center. Find out if they have an AYA Cancer Council. If they don’t – suggest making one! In doing so there might one day be more than 2 cancer centers in the US that provide excellent care across all aspects of the AYA cancer experience!
National Cancer Institute. (2014). A snapshot of adolescent and young adult cancers. Cancer Snapshots. Retrieved from https://www.cancer.gov/research/progress/snapshots/adolescent-young-adult
Reed, D., Block, R.G., & Johnson, R. (2014). Creating an adolescent and young adult cancer program: Lessons learned from pediatric and adult oncology practice bases. Critical Mass. Retrieved from
Healthcare Rights Initiative. The Healthcare Rights Initiative is home to Change It Back Centers of Excellence program. Change it Back AYA Cancer Alliance. Retrieved from http://hcri.org/programs/change-it-back/
Johnson, R. H. (2013). AYA in the USA. International Perspectives on AYAO, Part 5. Journal of Adolescent and Young Adult Oncology, 2(4), 167–174. Retrieved from http://doi.org/10.1089/jayao.2012.0027
Clarissa Schilstra is a two-time cancer survivor. She was diagnosed with acute lymphoblastic leukemia for the first time when she was two and a half years old. She went through two and a half years of chemotherapy and survived. She led a happy and healthy life until June of 2007, shortly before her 13th birthday, when her cancer relapsed. She then went through another two and a half years of chemotherapy, this time accompanied by radiation. She is now twenty-two years old and a graduate of Duke University. Her passion is helping others cope with the ups and downs of life during and after cancer treatment. She currently works full-time as a research assistant in a pediatric health psychology lab at the University of Miami, but it is her goal to become a pediatric clinical psychologist and she would like to help improve the psychological care available to adolescents and young adults who have serious illnesses. As CKN Section Editor, Clarissa hopes to provide advice based on her personal experience and to share relevant news and research to help young adult patients and survivors find new ways to live their best life in spite of the shadow of cancer. You can find Clarissa’s book, Riding the Cancer Coaster: Survival Guide for Teens and Young Adults, on Amazon.com. To learn more about Clarissa and her book, or to find AYA cancer support resources, visit her website and blog at www.teen-cancer.com.