Colorectal Cancer Alliance

A group of colorectal cancer organizations, including the Colorectal Cancer Alliance, Fight Colorectal Cancer (CRC), and Colon Cancer Coalition, today applauds the 

United States Preventive Services Task Force (USPSTF) draft recommendation to lower the screening age for colorectal cancer to 45 years old

Today’s news from the USPSTF begins a one-month public comment period ahead of finalizing the recommendation next year. The colorectal cancer organizations encourage advocates to show their appreciation by signing this letter of support and requesting the draft guidelines become final.

The group has released the following joint statement:

“The United States Preventive Services Task Force (USPSTF) announced its intent to recommend that colorectal cancer (CRC) screenings begin at 45 years old for individuals at average risk. The majority of health insurance carriers in the United States will follow the USPSTF recommendation once finalized. This means that people age 45 and older will, in most cases, be eligible for insurance reimbursement for CRC screening. This recommendation lowers the USPSTF’s recommendation from 50 to 45, and aligns with the American Cancer Society’s 

 that screening begin at age 45 based on 

 published in the Journal of the National Cancer Institute. The recommendation is now in draft form and open for public comment.

The United States Preventive Services Task Force (USPSTF) assigns one of five letter grades to each of their recommendations. The draft guidelines recommend CRC screening at age 45 at a B Grade, which means there is a high certainty of at least a moderate benefit for the service. The Task Force advises that clinical practices offer all services that have an A or B recommendation.



 It means it is required that private insurance plans subject to the Affordable Care Act (ACA) and Medicare plans provide coverage for the service without any co-pay or out-of-pocket costs to the patient. The CRC screening recommendations are still a draft. Insurance will not cover the change in guidelines until this is officially determined.

A group of leading CRC non-profits, including the Colorectal Cancer Alliance, Fight Colorectal Cancer, and the Colon Cancer Coalition, are celebrating this draft recommendation as a success for health advocacy, and see it as a necessary step forward to protect the well-being of Americans. This change reflects updated CRC evidence, particularly the upward trend in CRC diagnoses among people under age 50, known as young-onset or early-age-onset CRC. Alarmingly, the incidence of young-onset CRC has increased by 2% every year since 1990, with no end in sight.

. Furthermore, a recent study demonstrated a steep increase in CRC incidence between ages 49 and 50, with most cases diagnosed at an invasive stage among patients 50 years old, specifically. This suggests that these cancers were developing undetected for several years prior to the diagnosis at age 50.

“In addition to prevention, diagnosing some cancers at an earlier stage could potentially be associated with more favorable cost-benefit and resource allocation balances and should be taken into account when estimating the potential effects of a screening threshold at 45 years of age,” according to a 

This draft recommendation will be finalized next year and will benefit thousands of younger individuals who were previously unable to afford this life-saving screening due to lack of coverage by insurance carriers. On-time CRC screening is cancer prevention. Delays in screening give cancer time to grow and metastasize, which drastically cuts survival rates, results in exorbitant treatment costs, and affects quality of life for patients and their caregivers. This creates financial strain for many, on top of the emotional toll of a cancer diagnosis.

This disease often impacts people while at the height of their careers, building their families, and caring for older relatives. These are lives that need greater protection from CRC. Protection easily afforded through life-saving screening.

For these reasons, we congratulate the USPSTF for updating its stance in response to the alarming growth of young-onset CRC.This change will fulfill the USPSTF organizational 

 “to improve the health of all Americans by making evidence-based recommendations about clinical preventive services.” There is ample evidence to lower the screening age now. Lowering the recommended age for screening is supported by both the science and a moral obligation to save lives. Therefore, we applaud the USPSTF for its recommendation to reduce the age of screening for those at average risk of colorectal cancer to 45.

To all of the patients, survivors, and caregivers of young- or early-onset colorectal cancer, the Colorectal Cancer Alliance, Fight Colorectal Cancer and Colon Cancer Coalition recognize your experience is inextricably tied to this life-saving decision. Your journey and struggle with this disease has not been in vain."


As this is a draft recommendation, we urge you to share your story and voice your support for this new guidance directly to the USPSTF by November 23, when the comment period ends. All stories and comments shared here will be shared with the USPSTF at the close of the public comment period. Make your voice heard at 

Articles

A group of colorectal cancer organizations, including the Colorectal Cancer Alliance, Fight Colorectal Cancer (CRC), and Colon Cancer Coalition, today applauds the United States Preventive Services Task Force (USPSTF) draft recommendation to lower the screening age for colorectal cancer to 45 years old for average risk individuals.

Statement on USPSTF's Draft CRC Screening Recommendation

The Colorectal Cancer Alliance (Alliance) today released its first survey findings on caregivers of young-onset colorectal cancer (CRC) patients. The 

 highlights the knowledge and support gaps reported by more than 200 caregivers, including needs related to medical decision making, financial support, parenting, mental health, and household and patient transportation issues.

The report is based on a caregiver-specific set of questions included in the latest Never Too Young Survey of young-onset CRC patients, survivors, and caregivers. A separate report on patients and survivors is 

“The Alliance is committed to casting a light on the challenges of caregivers, who in many cases are unprepared for this vitally important and incredibly demanding role,” said Andrea Goodman, Vice President of Patient and Family Support. “By better understanding the caregiver experience, our organization can develop more effective resources and support programs for this audience.”

Little research has been conducted on the coping strategies that either maximize or impede daily life among caregivers. Even less information is available on interventions medical providers can suggest to ease the caregiving burden. This report elucidates these challenges and others, making the burden and significance of the caregiver journey more visible.

48% of respondents had knowledge gaps around treatment options

40% of respondents took an employment leave of absence, quit a job, or left school due to increased caregiving responsibilities

27% of respondents said the diagnosis made their relationship stronger while 32% stated the diagnosis strained their relationship

68% of respondents said they needed help for depression

32% of respondents reported fatigue, which is an overwhelming sense of tiredness

38% of respondents worried about future financial problems due to treatment costs

This caregiver report evolved from a series of trailblazing surveys the Alliance first launched in 2016 to better understand challenges and unmet needs in the under-50 population. The Never Too Young Survey series introduced a set of questions geared towards caregivers for the first time in 2018 — a questionnaire that was greatly expanded in 2019, providing for this report.

Young-onset colorectal cancer refers to people diagnosed under the age of 50, which is the recommended screening age by the United States Preventive Services Task Force.

The Colorectal Cancer Alliance (Alliance) today released its first survey findings on caregivers of young-onset colorectal cancer (CRC) patients. 

Alliance Releases Caregiver Survey Report 2020

The Colorectal Cancer Alliance (Alliance) today launched 

, an online community where colorectal cancer patients, survivors, and caregivers meet to connect, share, and learn. Peer support is a cornerstone of the Alliance, and Ally to Ally’s advanced features let members easily find the people and information most relevant to them.

The web-based Ally to Ally serves as a complement to the Alliance’s existing 

 Facebook community and uses advanced functionality to offer topic-specific groups, user-friendly search, and personalized profiles on a protected platform.

Ally to Ally makes it easier than ever to capture and access the valuable experiences from each member’s cancer journey. Features include:

A profile page where you can share your story.

Easily searchable content in dedicated discussion groups.

Hidden communities for collaboration between ally leaders, only visible to those leaders.

A dedicated place to discover and sign up for volunteer opportunities, which will enable tracking and recognition of service hours.

Badges and ribbons that honor your service and achievements, inspiring other allies to greater impact.

 to find answers, share experiences, and welcome shy new allies,” said Ali Miller, Director of Community Engagement at the Alliance. “With your participation, the Alliance’s two amazing online communities will help ensure no one experiences colorectal cancer alone.”

The Colorectal Cancer Alliance (Alliance) today launched Ally to Ally, an online community where colorectal cancer patients, survivors, and caregivers meet to connect, share, and learn

Alliance Launches Cutting-Edge Online Community

Today, during Young Survivors Week, national leading non-profit 

 released findings from its latest survey of young-onset colorectal cancer patients and survivors. The 

 shares the self-reported medical, psychosocial, and quality of life experiences of this often-overlooked population to better understand their challenges and needs.

Young-onset colorectal cancer refers to individuals diagnosed under the age of 50. The Alliance first launched the trailblazing young-onset colorectal cancer survey in 2016. Alliance research has shown young-onset colorectal cancer patients are increasingly diagnosed with advanced disease requiring aggressive treatment in comparison to those diagnosed after 50, the age to begin screening according to guidelines by the U.S. Preventive Services Task Force.

The Alliance’s latest Never Too Young Survey Report, based on data from a 2019 survey, provides key young-onset trends and findings. Among patient and survivors who responded to the survey:

49% indicated they had no knowledge about the signs and symptoms of colorectal cancer before their diagnosis

75% of patients and survivors reported they saw at least two different physicians, and 36% were seen by three or more physicians, before receiving a correct diagnosis

40% of patients and survivors expressed that their providers dismissed their symptoms and concerns

Younger patients diagnosed between the ages of 19-39 were more likely to report that their concerns were dismissed by their doctors

The most common misdiagnosis among participants are hemorrhoids, followed by irritable bowel syndrome (IBS) and anemia

Nearly 75% of survey participants shared that they have been concerned about their mental health.

Colorectal cancer incidence has increased in people 20-39 years old since the mid-1980s and among those 40-54 years old since the mid-1990s. The steepest increase has been in the younger age groups. In recent years, the incidence has increased by 2.2% annually in individuals younger than 50 years old and 1% in individuals 50-64 years old, in contrast to a 3.3% decrease in people 65 years old and older.

885 patients and survivors completed the survey that included up to 140 questions. The majority of patient/survivor respondents (83%) were first-time survey participants. The 2019 survey included questions for caregivers, as it did for the first time in 2018. A separate report with those findings will be released by the Alliance later this year.

“The Never Too Young Survey Report is a critical tool in advancing our mission to end colorectal cancer in our lifetime,” said Michael Sapienza, CEO of the Colorectal Cancer Alliance. “Change is inspired by stories, and stories are fortified with data. Here we have real-world evidence on the traumatic impact of colorectal cancer on our young people, amplifying their stories and drawing attention to policy and healthcare improvements that will save lives.”

“The Never Too Young Survey Report illustrates the many ways young-onset colorectal cancer forever changed my life and the lives of so many others,” said Kim Newcomer, Never Too Young Program Manager at the Alliance. “The data presented within the Never Too Young Survey Report is one of the most compelling cases for why we must end this disease. I'm so thankful for everyone who participated and let their voice be heard.”

Several important gaps throughout the colorectal cancer journey and survivorship experience were identified through this survey. The findings further exposed a critical issue that young-onset colorectal cancer patients are diagnosed at late stages. This occurs due to multiple challenges around misinformation and medical providers dismissing symptoms brought forward by patients. Young-onset patients also wait to see their doctor after symptoms arise, and when they do seek medical advice, they frequently find that they receive incorrect diagnoses and that it requires multiple visits and numerous providers before finally getting to an accurate diagnosis. This indicates a knowledge gap, both among the public and the medical community, to identify early signs and symptoms of young-onset colorectal cancer. It is critical that these colorectal cancer symptoms move to the forefront of cancer education.

Lastly, the survey findings highlighted the unique challenges of cancer treatment for younger patients around fertility and sexual dysfunction, as well as pain and wellness beyond the course of treatment. Many patients still felt uninformed prior to or during treatment, even though the majority of young-onset patients indicate ongoing pain and side effects that change the trajectory of their daily life, and outcomes related to sexual function and/or reproductive health.

Colorectal cancer is the third-most commonly diagnosed cancer and the second-leading cause of cancer death in men and women combined in the United States. In its early stages, colorectal cancer is very treatable, with a five-year survival rate of 90%, making it highly preventable through 

. On average, the lifetime risk of developing colorectal cancer is about one in 23 for men and one in 25 for women; however, this varies widely according to individual risk factors.

The Colorectal Cancer Alliance is dedicated to working with all stakeholders, including policymakers, to address the unmet needs in the unique and often overlooked young-onset population of colorectal cancer patients and survivors to improve their outcomes.

The full survey report can be viewed here

Today, during Young Survivors Week, national leading non-profit Colorectal Cancer Alliance released findings from its latest survey of young-onset colorectal cancer patients and survivors. 

Colorectal Cancer Alliance

Statement on USPSTF's Draft CRC Screening Recommendation

Alliance Releases Caregiver Survey Report 2020

Alliance Launches Cutting-Edge Online Community

Alliances Releases Never Too Young Survey Report

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