Teen Cancer America

A hospital can be a lonely place for a young adult diagnosed with cancer; this organization is working to create spaces for connection and comfort in hospitals where teens are treated and raising awareness of the issues young adult patients face.

Simon Davies, executive director of Teen Cancer America, calls the teens and the young adults ages 13 to 25 who are the focus of the organization’s efforts “the lost tribe.” Citing common concerns of those advocating for this young adult population—including a lack of age-appropriate psychosocial resources and research and clinical trials—Davies says that Teen Cancer America is dedicated to raising awareness of this unique population of patients and meeting their needs.

Founded in 2012, Teen Cancer America aims to “ignite a movement to generate action around helping teens and young adults with cancer.” Specifically, Davies says, the organization’s mission is to “deliver specialist services for teenagers and young adults with cancer in US hospitals to improve their treatment experience, their outcomes, and, ultimately, their survival.”

While Teen Cancer America is relatively new in the United States, the organization’s founders, Roger Daltrey and Pete Townsend of the legendary rock band The Who, have more than 22 years of experience with their UK-based charity Teenage Cancer Trust on which to base their efforts. The organization’s work in this country reflects their keen awareness of the issues and the concerns that are top priority for the patients they serve.

Chief among the initiatives of both Teenage Cancer Trust and Teen Cancer America to date has been developing facilities for teens and young adults within cancer centers—dedicated physical spaces within hospitals designed specifically around young people’s needs, where patients can gather to support one another. Ideally, these include patient bedrooms specially adapted for teens, a social and dining space, a “chill-out” room for quiet moments, and a study area—always working with whatever space the hospital can provide. Key, adds Davies, is technology to enhance communication—including music and entertainment options.

Whatever the space allocated, Davies says, the “most important component of any facility is the benefit of young people being treated together. They give each other unique support and camaraderie that can’t be achieved by the professional staff. Seeing young people supporting each other when they are depressed, scared, or angry about what is happening to them is particularly gratifying.” And, he says, medical professionals who work with the young patients who are offered specialized space and programming like this affirm the benefit: “Doctors report an improvement in adherence and compliance in these centers where young people get support from each other and where staff become expert in supporting teenagers,” Davies says.

Since 2012, Teen Cancer America has developed a facility for teenagers and young adults at University of California, Los Angeles (see photo) and has also funded a program manager to further develop the service. In addition, Davies says, grants have been provided to Memorial Sloan-Kettering Cancer Center, Yale–New Haven Hospital, and the Children’s Hospital of Philadelphia; and future developments are planned at Stanford, University of Southern California, the Dana-Farber Cancer Institute, and Cook Children’s Hospital. “We want every major cancer center in the United States to have a Teen Cancer America facility, whether it is a pediatric or an adult cancer hospital,” Davies says. “We want to see improved treatment experience, improved outcomes, and increased survival.”

As they work to ensure that more teenage and young adult cancer patients benefit from the space and the attention they deserve, Davies says that the organization is fueled by comments like the one from a young patient who said of the opportunity to spend time in the Teen Cancer America space during treatment: “This is a good place to be if you are having a bad time.”

For more information visit teencanceramerica.org.