FAQ: #AYACancerTruth

Wrong. Approximately 70,000 Americans between 15 and 39 years of age are diagnosed with cancer each year.

On average, it takes 75 days from onset of symptoms to receive a diagnosis.

  • Adolescents & young adults have not benefited from the same care and treatment advances as young children and older adults with the same exact diagnosis.
  • In fact, they have the highest reported rate of non-malignant cancers of any age group and yet they are still fatal.
  • Only 5% saw a pediatric specialist even though research suggests survival improves using a pediatric protocol depending on diagnosis.

Federal agencies that fund and study cancer divide programs into two camps —  pediatric and adult —  with no clear line and a huge gap in care. In fact, 15 to 39-year-olds are least likely to be enrolled in clinical trials.

  • Researchers lack annotated biological samples and data collection programs specific to age.
  • There are few guidelines in place specific to this age population and what does exists varies from program to program.
  • One-third of adolescents and young adults in the United States have no coverage and nearly half of young adults forgo medical care due to cost.

  • Yes, there is a 80% survival rate but cancer isn’t just a diagnosis, it is a life changing experience. Let’s consider the following:
  • Let’s say a young adult is diagnosed with cancer at the age of 26 after studying for years to become a professional chef. Now, she can’t taste anything because treatment impacted her taste buds. How does a cancer diagnosis impact her ability to re-enter the workforce.
  • Let’s say a 17 year young is diagnosed with prostate cancer. He is one of the 50% of adolescent and young adult cancer patient not told his treatment could lead to infertility. Ten years later he meets the love of his life and they get married and want to have a child. Unfortunately, he is infertile. How had his cancer diagnosis impacted his ability to have biological children?
  • Survival should be considered only one aspect of cancer care. We want to ensure adolescents and young adults can survive AND thrive after a cancer diagnosis.

  • Most federal programs focus on low-income, elderly, and/or disabled cancer patients. After a cancer diagnosis, 15 to 39-year-olds are more likely to carry $100,000 less in net worth compared to the general population.
  • Annual medical expenses are approximately $8,300, nearly double what a peer without a cancer diagnosis will pay.
  • Cancer patients do not meet strict requirements set by insurance companies for fertility coverage and state adoption laws are inconsistent and depend on what are now considered arbitrary rules.
  • Adolescents and young adults are at a higher risk of relapse, developing a chronic disease, or a secondary cancer and yet they are typically only “tracked” for two years compared to five or more years for pediatric and older adult patients.

  • Talk to your community leaders from college administrators to your elected officials about adolescent and young adult health care;
  • Tweet the truth about the impact cancer has on the lives of adolescents and young adults diagnosed with cancer using #AYACancerTruth;
  • Share the AYA message on Facebook and Twitter;
  • Join Critical Mass: The Young Adult Cancer Alliance and support AYA cancer education & awareness year round; and
  • Register for the second annual Global Adolescent and Young Adult Cancer Congress which will be held in Atlanta, GA from December 5-7, 2017.

Sample Messages (Tweets/Facebook):

@theNCI: 70K between 15 & 39 are diagnosed with cancer each year in the US. #1 cause of disease related death at this age. #AYACancerTruthClick To Tweet

Adolescents and young adults have no “medical home” and face barriers at all levels of cancer care and delivery. #AYACancerTruthClick To Tweet

It takes avg. of 75 days for an AYA to receive a diagnosis. That’s the difference between a curable vs a terminal cancer. #AYACancerTruthClick To Tweet

Cancer patients between 15 & 39 are the least likely to be enrolled in clinical trials: the gold standard of cancer care. #AYACancerTruthClick To Tweet

41% of adolescents & young adults report an unmet counseling need one year after their cancer diagnosis. #AYACancerTruthClick To Tweet

Annual medical expenses for adolescents & young adult survivors are 2X what a peer without a cancer diagnosis will pay. #AYACancerTruthClick To Tweet

A cancer diagnosis does not guarantee access to fertility benefits & 50% are never told treatment could impact fertility #AYACancerTruthClick To Tweet

One in three 15-39 year old patients & survivors will lose insurance coverage due to a life transition like job loss. #AYACancerTruthClick To Tweet

Sharable Graphics

Share the graphics below with your social networks along with a link to our “FAQ: AYA Cancer Truths” page.