Adolescent and Young Adult
AYA = Adolescent and Young Adults age 15-39
What is AYA?
AYA stands for “Adolescent and Young Adults,” which is defined as ages 15-39. Each year, 89,500 AYAs will be diagnosed with cancer. AYAs are THE most underserved patient population by age.
AYA cancer patients and survivors face a unique array of challenges each and every day. Major life milestones that are tricky for all young people – like starting a career, finishing college, or finding a romantic partner – can feel impossible when cancer is thrown into the mix.
On top of treating their cancer, AYAs must navigate:
AYAs are more likely to receive a late diagnosis or to be misdiagnosed, compared to other age groups. Patients, and even their doctors, often don’t consider cancer because of how “rare” it is for this age group (tell that to the 89,500 of them diagnosed this year). Not to mention the high amount of uninsured or underinsured AYAs in the U.S. avoiding the doctor to avoid a bill. Additionally, AYAs are often grouped with pediatric or older adult patient populations which masks important differences in cancer treatment and survivorship. AYAs geographic location can determine whether or not they are receiving age-appropriate care and resources. Lack of representation in clinical trials is another huge barrier for progress in AYA cancer. Disparities in health care are compounded for AYA patients of color and other medically marginalized groups. Studies show these patients often experience later stage diagnosis and higher mortality rate, while also navigating possible medical bias, discrimination, and the accompanying mental distress.
Bill of Rights
Together with our nonprofit partners, we seek to create an inclusive community of patients, survivors, caregivers, and professionals to end isolation for AYAs and make cancer suck less.
As an AYA patient, survivor, thriver, or however you see yourself in your cancer journey, you have the right to:
• Be listened to and heard when seeking a diagnosis and discussing treatment options.
• Understand your diagnosis, treatment, and the side effects you might expect, and ways to manage those side effects.
• Ask for a second opinion at any time during your diagnosis and treatment.
• Feel comfortable and trusted in your care. There is nothing wrong with switching doctors.
• Have open conversations early in your treatment planning about the impact of your treatment on future fertility and a discussion about your fertility preservation options.
• Understand the financial impact of cancer treatment and receive information and support to help plan accordingly.
• Receive information about clinical trials that may be beneficial to your treatment and survivorship.
• Receive age-appropriate discussions and support from a multi-disciplinary team including psychosocial support and palliative care and be given resources to find more information when you need it.
• Be a part of your treatment decision-making. As a patient, you have autonomy over your health and should be confident in your treatment options since they affect YOU.
• Have access to all treatment options regardless of your race, culture, religion, gender, sexual identity, ability, or socioeconomic status.
• Seek support from other AYAs who get it.
• Look forward to a productive future.
We recommend that you:
• Connect with other AYAs.
• Bring a parent, friend, or spouse with you to your doctor’s appointments – it is a lot of information!
• Find an outlet that helps you relax.
• Ask questions and speak up if the answers you receive are not clear to you.
To view the full Bill of Rights:
AYA Cancer Collaborative
Stupid Cancer is committed to serving the adolescent and young adult cancer community – and we aren’t the only ones! We strive to work in concert with the many other great nonprofit organizations that also serve our community.
Check out these organizations below that are doing amazing work to support AYAs.
Alliance for Fertility Preservation
Annapolis Wellness House
Athletes Fighting Cancer
Bright Spot Network
Cactus Cancer Society
Cancer and Careers
Cancer Support Community
Cassie Hines Shoes Cancer Foundation
Cool Kids Campaign
Corporate Angel Network
Dear Jack Foundation
Elephants and Tea
Fibrolameller Cancer Foundation
Gilda’s Club Madison
Imerman Angels One-on-One Cancer Support
Inova Life with Cancer
JUST TRYAN IT
Leukemia & Lymphoma Society
Living Beyond Breast Cancer
Love for Life
Melanoma Research Foundation
National Coalition for Cancer Survivorship
New Day Foundation
Nikolas Ritschel Foundation
Reid R. Sacco AYA Cancer Alliance
Smith Center for Healing and the Arts
Teen Cancer America
True North Treks
Young Adult Survivors United
Young Survival Coalition
We aim for this collaborative to be inclusive of all organizations that support the AYA cancer community. Should your organization be on this list? Reach out to firstname.lastname@example.org to be added to the meeting.
Make a Donation
With your help, Stupid Cancer can continue to make the lives of AYA cancer patients and survivors suck less so that they can Get Busy Living.
Because the truth is, we can’t do any of this without you.
NOTE TO DEVELOPER THIS IS NEEDED FOR THE CORRECT CURRENCY SIGN CAN SHOW. THERE IS A GLITCH WHERE WE NEED TO USE OPEN SANS FOR IT TO SHOW CORRECT TYPOGRAPHY.