Young adults with cancer are seemingly invisible

Young adults with cancer are seemingly invisible
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Approximately 70,000 adolescents and young adults are diagnosed with cancer each year in the United States. In fact, I’m one of them.

Imagine my shock when I read through the Annual Report to the Nation on the Status of Cancer released last week and found no mention of young adults.

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Literally nothing about patients between the ages of 15 and 39 in the annual benchmark report on cancer put together by federal agencies and national advocacy groups. Not even a footnote. Frankly it should have been titled the “Annual Report to the Nation on the State of (Non-Millennial) Cancer.”

 

Older adolescent and younger adult patients are often labeled as “too young” for adult care or “too old” for a pediatric setting. They fall into a care gap unnoticed which has a direct impact on survival.

Adolescents and young adults have seen little to no improvement in survival rates since President Richard Nixon declared a “war on cancer” nearly a half-century ago; shockingly, colorectal and cervical cancer mortality rates are increasing for young adults.

You would think this would rise to the level of “Annual Report to the Nation” material, but it is ignored in favor of happier (and genuinely good) news about overall declines in incidence and mortality rates.

The young adult gap isn’t news to anyone. In fact we’ve known about it for more than a decade: In 2007, the National Institute of Health and Livestrong funded the Adolescent and Young Adult Oncology Progress Review Group which was tasked with identifying barriers faced by patients diagnosed with cancer between the ages of 15 and 39.

It was hailed as historic for oncology and the federal government and was only the second oncology group to focus on a disparity group across different diseases and disciplines. Everyone had a seat at the table: researchers, clinicians, survivors, advocates, pediatricians, disease-specific experts, statisticians, payers, and pharmaceutical companies.

Through collaboration and knowledge-sharing, the group identified that age was, in fact, the main barrier to cancer care, treatment, and overall survival. Age. The standard cancer care and delivery services, focused on younger and older patients, simply couldn’t be applied to this age group.

But the impact of a cancer extends far beyond oncology for young adults. They face their own unique challenges. For example, you cannot defer your student loans while undergoing active cancer treatment. It was both an extraordinary, and depressing finding.

As is typical of so many federal blue-ribbon commissions, this effort was lauded. Websites were created. Professional societies and journals appeared. Everyone gave themselves a pat on the back. Then it became obvious that the young adult cancer problem didn’t have an easy fix. It couldn’t be blamed on payers or drug prices.

No, it required real effort. Doctors would need to be educated. Cancer centers would need to adopt a new standard of care for this age group. Clinical trials networks would need to actually recruit young adults.

Rather than admitting that there is a problem within cancer care, federal agencies and advocacy organizations seem content to omit us from the records. After all, if the adolescent and young adult cancer problem doesn’t exist, there is nothing to solve.

Members of Congress should read the annual report and celebrate the advances we have made as a nation. But they must also ask themselves what’s missing from it and what it could mean for their children, grandchildren and other loved ones: Will they be counted? Will they receive the care and treatments funded annually by Congress? Chances are they won’t.

In a democracy like ours, there is something worse than losing: not being counted at all.

Kate Yglesias Houghton is president of Critical Mass: The The Young Adult Cancer Alliance, a community-powered advocacy organization that brings together patient, provider, and policymakers to remove barriers young adults face after a cancer diagnosis.