A Community Coming Together
In March 2011, a group of more than 30 community members and individuals representing 11 Fort Worth, Texas oncology centers and organizations met to discuss the care, needs and support of local AYA cancer patients. Led by Dr. Karen Albritton, the meeting inspired the development of a unique, inter-city task force to further examine the local AYA care landscape. Through data sharing and collaboration, the task force confirmed a need to work together to improve the lives of young people diagnosed with cancer in North Texas.
In 2012, the AYA task force formalized their commitment to collaboration by establishing the Fort Worth Adolescent and Young Adult Oncology Coalition (FWAYAOC), a legal nonprofit foundation that operated under the auspices of the Healthy Tarrant County Collaboration. In July 2015, the coalition became an official, stand-alone 501(c)3 nonprofit organization led by a board of directors and advised by nine institutional medical partners, two service organization partners and more than 100 healthcare professionals, AYA survivors, caregivers and passionate volunteers.
The History of AYA Oncology
The U.S. medical and scientific community began recognizing the needs of AYAs with cancer during the late 1990s. In 2005, a pivotal “Progress Review Group” meeting (co-sponsored by the National Cancer Institute and the Lance Armstrong Foundation) resulted in consensus on five key recommendations for improving the outcomes of AYAs with cancer.
From this meeting, a collaborative national organization of interested professional groups formed the Livestrong Young Adult Alliance. In 2012, the group rebranded and became the Critical Mass: The Young Adult Cancer Alliance. With the support of the NCI, work has focused on research, understanding disparities in access to care, health care delivery and outcomes. Recently, the National Comprehensive Cancer Network released guidelines for AYA oncology (for providers and for patients).
We owe much to the work in the United Kingdom, where the AYA oncology movement began from the bedside, as parents and concerned philanthropic advocates formed a charity called Teenage Cancer Trust (TCT). The charity began building dedicated units for teenagers and young adults ages 16 to 24; they now have 25 units in Britain that focus on creating an age-appropriate environment staffed by AYA cancer oncologists and a support team that provides educational and vocational support, mental and emotional support, peer group activities and care coordination.
Several hospitals (all at academic medical centers) in the U.S., are starting or planning to build AYA programs and inpatient units. The first to open were at Seattle Children’s and UCLA. The rock band The Who, long time supporters of the TCT, have helped launch an American version called Teen Cancer America, which seeks to promote similar young adult cancer units in the U.S.