In January, the US Preventive Services Task Force (USPSTF) opened their draft research plan on anal cancer screening to public comment. This is the first time the Task Force has considered whether to recommend screening for anal cancer.

Despite available treatments for precancer, anal cancer is not routinely screened for. Today, a correct and early diagnosis is often the result of persistence by the patient, not medical standards that provide guidelines for providers. However, with national screening and early detection, the outcomes for patients would be greatly improved.

The Anal Cancer Foundation submitted an eleven-page testimony calling on the Task Force to recommend the first national screening protocols for anal cancer and citing the evidence that supports it. The Anal Cancer Foundation is thrilled that the task force has finally considered the importance of prevention and early detection for our community, given that anal cancer is increasing and the Task Force’s recommendations serve to steer national protocols for all Americans.

About the USPSTF

The U.S. Preventive Services Task Force makes evidence-based recommendations about preventive services such as screenings, behavioral counseling, and preventive medications. The Task Force recommendations are created for primary care professionals by primary care professionals.

About the research plan

The plan regarding anal cancer screening is meant to be used as a framework. In creating it and getting outside input, USPSTF sought to identify studies and review evidence regarding the best screening and treatment for anal precancers. They were hoping to highlight risk groups for screening, as well as the best treatment modalities. The ultimate goal is to catch anal cancer when it is still in its precancerous stage.

Our Testimony

Our position is that the Task Force should expand its scope to include more at-risk communities. We also called on the Task Force to deepen its inquiry as to who gets anal cancer and the suffering faced by patients. Prevention and early detection are essential to ending anal cancer. Clear and inclusive national guidelines will save lives. This is the message we wanted to convey to USPSTF. Please read our testimony to the Task Force to understand what—and why—we are asking for expanding their definition of who is "at-risk."

How our community stepped up

In transmitting the importance of expanding the guidelines, we reached out to the members of our thriver and caregiver community. We know that while many families impacted by anal cancer would be included in the populations USPSTF is considering, many would be omitted under the current research plan. To ensure all voices were heard, we sent a call out to encourage all thrivers and their loved ones to share their own stories with the Task Force.

We were overwhelmed by the stories that poured in. Each one, whether from a thriver, a caregiver, or anal cancer medical professional, detailed in moving and personal terms the impact of this disease. We are so grateful to everyone who submitted. Each word does not go unnoticed and every step forward counts in the fight against this preventable cancer.

Thank you to our entire community for answering the call and for being right there with us in these efforts. We will learn more about the Task Force's final recommendations in the coming months and will be sure to update you with further actions and next steps.

Our mother, Paulette, who inspires us every day, did not have the benefit of screening. We will continue to work tirelessly to raise awareness about the importance of anal cancer screening and to advocate for increased access to care for all patients. We are grateful to you for being with us on this journey.