History

Young adults can and do get cancer. Each year approximately 70,000 adolescents and young adults between 15 and 39 years of age are diagnosed with cancer in the United States. Young adults represent 8% of all new cancer diagnoses annually in the United States. The National Cancer Institute reports that cancer is the leading cause of disease-related death for this age group and they have found “evidence [to] suggest that some cancers in adolescents and young adults may have unique genetic and biological features.”

The invisible cancer population. Unfortunately, young adults have no place in cancer care which is rigidly siloed into two fields: pediatric and adult. Adolescent and young adult patients are often labeled as “too young” or “too old” to fit into either setting and frequently fall into a care gap unnoticed. This has a direct impact on their survival. Adolescents and young adults have seen little to no improvement in survival rates since the War on Cancer began more than four decades ago.

Our cancer is different. Our needs are different. Age is rarely considered when determining a patient-centered treatment or survivorship plan. But for this patient population, a cancer diagnosis is about more than just the disease. Adolescents and young adults are at a unique stage in their lives. Many are just starting to build a life on their own and working towards becoming self-sufficient individuals. Some have young children, others may be in the middle of a college semester. Young adults in the workforce rarely have the financial stability or tenure to take off the time necessary to fight this life-threatening disease.

Collaboration and knowledge-sharing. Between 2007 and 2010, the National Institute of Health and LIVESTRONG supported the Adolescent and Young Adult Oncology Progress Review Group (AYAO PRG) which was tasked with identifying barriers faced by patients diagnosed with cancer between 15 and 39 years. It was an innovative and collaborative model and the first time a federal and private foundation combined to tackle the unique needs of specific patient population. Everyone had a seat at the table – researchers, clinicians, survivors, advocates, pediatricians, disease-specific experts,statisticians, payers, and pharmaceutical companies. At the time, the AYAO PRG was only the second oncology group to focus across different diseases and disciplines.

Age is a barrier to survival. Through collaboration and knowledge-sharing, the AYAO PRG identified two basic problems with adolescent and young adult cancer care: First, age is not taken into account when diagnosing or treating cancer patients. Second, cancer care and delivery services did not meet their unique needs.

From identify to addressing unique needs. The Young Adult Cancer Alliance was born from the need to fully focus on adolescent and young adult care beyond the AYAO PRG. For more than a decade, we have brought together a diverse group of stakeholders – patients, survivors, physicians, providers, researchers, advocates, industry leaders, hospitals, and institutions – who have all seen first-hand the devastation cancer can cause in the life of a young person. In 2016, operations were moved to Washington, DC to focus on community building and advocacy full-time.

Many treat cancer. We transform care. Critical Mass: The Young Adult Cancer Alliance is a community-powered 501(c)3 advocacy organization that brings together a diverse coalition of patients, providers, and stakeholders who know too well the devastating impact cancer can have on the life of a young adult. Through continued collaboration, we aim to:

  1. Eliminate barriers and address the unique needs of 15 to 39-year-old cancer patients and survivors
  2. Create the appropriate infrastructure to develop and sustain AYA oncology as a recognized field
  3. Reframe survivorship to go beyond five-year survival rates and acknowledge late-effects

Critical Mass: The Young Adult Cancer Alliance is the only organization in the country that raises awareness and works to enact public policy solutions that remove barriers faced by young adults no matter their disease. We are on a mission to transform young adult cancer care in the United States.

Join the Critical Mass. Patients, survivors, practitioners, industry leaders, and policymakers all have a role to play to ensure every American, no matter their age, can both survive and thrive after a cancer diagnosis. Critical Mass: The Young Adult Cancer Alliance invests in infrastructure and programs to support the AYA cancer community.

  • The AYA Cancer Journey puts patients and survivors back in control of their care with a helpful, printable list of questions every young adult should ask their care team.
  • Mission Control is a free, digital tool that connects young adult patients with age-appropriate programs in their community and nationwide.
  • The Public Policy Team engages advocates on state and national issues from student loan deferment to fertility preservation.
  • We bring the community together each year for the one and only Young Adult Cancer Action Day.

Our education program runs full-time to raise awareness about the unique needs of #AYAcancer patients and survivors.