Hidden Barriers Could Contribute to Rising Colorectal Cancer Deaths in Adults Under 50

Colorectal cancer (CRC) is no longer a disease of the elderly. Cases among adults under 50 have surged dramatically over the past two decades, and it has become the deadliest cancer in that age group. Awareness of the disease and clinical trial options remains dangerously low, particularly when it comes to women during pregnancy and postpartum. As the nation observes Women's Health Month (beginning on Mother's Day) and Clinical Trials Awareness Month, the leading nonprofit Colorectal Cancer Alliance (Alliance) is calling on patients, caregivers, and healthcare providers to confront the urgent and underrecognized public health challenges that may be contributing to the rising death rates.

Pregnancy and Postpartum: When CRC Symptoms Are Overlooked

Colorectal cancer is now the leading cause of cancer death in women under 50 in the United States — surpassing breast cancer, cervical cancer, and other cancers more commonly discussed in women's health circles. For women who are pregnant or recently postpartum, the danger of misdiagnosis is compounded. Colorectal cancer shares many symptoms with normal pregnancy and postpartum experiences. These overlapping symptoms can delay diagnosis by months or even years.

Symptoms commonly overlooked or misattributed during pregnancy/postpartum:

• Rectal bleeding or blood in stool (often dismissed as hemorrhoids)
• Changes in bowel habits, including persistent diarrhea or constipation
• Weakness or fatigue
• Abdominal cramping, bloating, or discomfort

"Many young people and their doctors simply don't consider colorectal cancer a possibility," said Michael Sapienza, CEO of the Colorectal Cancer Alliance. "That blind spot is costing lives. By the time symptoms are investigated and a diagnosis is made, the disease is often at an advanced stage with limited treatment options."

Clinical Trials: A Lifeline That Remains Out of Reach for Too Many

For young adults diagnosed with late-stage colorectal cancer — where five-year survival rates can be as low as 13% — clinical trials represent one of the most promising avenues for treatment and survival. Yet overall participation rates remain stubbornly low (approximately 7%*) due to a complex web of barriers that the Alliance Project Cure CRC is working to address by accelerating research toward cures:

• Health literacy and biomarker testing gaps: Patients may not understand what a clinical trial is, how biomarkers play a role or what participation entails, and may not be proactively offered trial options by their care team. Through Project Cure CRC, the Alliance Cancer Care navigation team helps simplify what clinical trials are, why they are important and how to find them. In addition, Project Cure CRC is spearheading a scalable biomarker project to improve access to testing, which helps unlock access to trials.
• Timing and logistics: Clinical trials take years to receive approval and then often require frequent clinic visits, which are incompatible with work schedules, childcare responsibilities, and the realities of life for young adults. The Alliance Project Cure CRC initiative is developing an AI-driven adaptive clinical trial platform to accelerate connecting patients to trials in real time based on personalized data, simplifying and speeding the process.
• Eligibility restrictions and misconceptions: Prior treatment histories, comorbidities, or narrow enrollment criteria can exclude many patients who might otherwise benefit. Many patients and some providers harbor myths that trials are a "last resort" or that participants will receive a placebo instead of treatment. Through Project Cure CRC, the Alliance Cancer Care navigation team helps patients understand these complex parameters, debunk myths and address misconceptions to find a trial for which they may be eligible and receive proper treatment.

"Clinical trials are not the end of the road — they are often the road to survival," said Marianne Pearson, VP of Cancer Care at the Colorectal Cancer Alliance. "Project Cure CRC’s adaptive clinical trial platform is working to dismantle the structural and informational barriers that prevent patients from accessing better treatments and outcomes."

A Call to Action This May – Project Cure CRC

The Alliance urges everyone to learn more about CRC risk factors and symptoms at  getscreened.org and get involved with Project Cure CRC to make a lifesaving difference at colorectalcancer.org/curecrc. To reach the Alliance Cancer Care navigation team, sign up for BlueHQ.org or call the toll-free helpline at 877-422-2030.

About the Colorectal Cancer Alliance

The Colorectal Cancer Alliance empowers a nation of passionate and determined allies to prevent, treat, and overcome colorectal cancer in their lives and communities. Founded in 1999 and headquartered in Washington, D.C., the Alliance advocates for prevention through initiatives like LEAD FROM BEHIND, magnifies support with BlueHQ, and accelerates science toward cures through Project Cure CRC. We are the largest national nonprofit dedicated to colorectal cancer, and we exist to end this disease in our lifetime. For more information, visit colorectalcancer.org.  

*Source: Journal of Clinical Oncology / Fred Hutch (Apr. 2024) https://ascopubs.org/doi/10.1200/JCO.23.01030 

Media Contact:

Emily Blasi
eblasi@ccalliance.org 
(202) 971-9964