Stupid Cancer helps to empower everyone affected by adolescent and young adult (AYA) cancer by ending isolation and building community. Our vision is that everyone in the AYA community is supported, understood, and accepted.
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.
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.
AYA Patient Bill of Rights
Together with our non-profit 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.
1. We are an interconnected community, including EVERYONE affected by AYA cancer, where all experiences are honored, celebrated, and seen.
2. We believe that all people should receive equal access to quality holistic cancer care no matter their diagnosis, location, means, age, race/ethnicity, ability, sexuality, or gender.
3. We empower our community with comprehensive resources and support.
4. We support the AYA community by addressing the real life hurdles that come with cancer as a young person and advocate for change where traditional support systems fall short.
5. We connect with our community with an honest unapologetic voice.
6. Our programming is innovative and socially responsive.
Our History
In the nineties, when Stupid Cancer founder Matthew Zachary was diagnosed with a pediatric brain cancer at 21 years old, cancer resources for young adults were few and far between, and ‘surviving’ meant living beyond five years. Adolescent and young adult (AYA) cancer programs did not exist and often patients were treated as kids or older adults, failing to acknowledge the unique life stage of AYAs.
In 2004, Matthew founded Steps for Living (which became I’m Too Young for This! Cancer Foundation in 2007 and then Stupid Cancer in 2012), a progressive social enterprise that linked his worlds of music, cancer advocacy, consumer health marketing, and technology to ensure that people like him, his wife, brother, and parents would have the opportunity to benefit from community and support resources they only wished they had in 1995.
In the years since its founding, through its innovative, award-winning, and evidence-based programs and services, Stupid Cancer has become the leader in the adolescent and young adult cancer space. The landscape for AYA cancer has changed dramatically over the last decade, in large part due to the work of Stupid Cancer. Although there are more resources for AYAs than ever before, the isolation of AYA cancer patients persists.
Looking ahead, Stupid Cancer envisions a world where everyone in the AYA community is supported, understood, and accepted.
Stupid Cancer is here to be the rallying point and leader in building the AYA cancer community, ending isolation, and making cancer suck less.
All of us at Stupid Cancer remain committed to empowering all AYAs impacted by cancer and advocating for equitable access to health care. Moving forward, we will be even more deliberate in ensuring we best use our resources to amplify the needs of every single individual within our community, and work to minimize the evident disparities across diverse populations, ensuring everyone has an equal opportunity to live a healthy life, to get busy living.
Alison Silberman, Stupid Cancer CEO
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 that are doing amazing work to support AYAs.
Alliance for Fertility Preservation
Annapolis Wellness House
Athletes Fighting Cancer
b-present
Bright Spot Network
Cactus Cancer Society
Cancer and Careers
Cancer Support Community
CancerCare
Cassie Hines Shoes Cancer Foundation
Cervivor
Connecting Champions
Cool Kids Campaign
Corporate Angel Network
Dear Jack Foundation
Elephants and Tea
Epic Experience
Escape
F*ck Cancer
Family Reach
Fibrolameller Cancer Foundation
First Descents
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
Triage Cancer
True North Treks
Ulman Foundation
Young Adult Survivors United
Young Survival Coalition
40 Worth Street, Suite 808
New York, NY 10013
212-619-1040
[email protected]
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