The Cancer Support Community Launches Program to Help Change Clinical Trial Misperceptions

June 22, 2016

WASHINGTON, D.C. – The Cancer Support Community (CSC), an international nonprofit, today announced the launch of the Frankly Speaking About Cancer Clinical Trials program, a landmark cancer education series devoted to building awareness among patients and caregivers about the importance of clinical trials as a viable treatment option.

Less than five percent of patients with cancer enroll in clinical trials, a number that has held steady for the past 30 years despite the fact that more than 20 percent of patients are eligible to participate in a clinical trial. Though they are at the heart of today’s successful cancer treatments, clinical trials are poorly understood by the public, and often viewed as an opportunity for researchers to treat people like test subjects or only as a “last ditch” option.

“When we ask individuals facing a cancer diagnosis about clinical trials, more often than not, we hear myriad reasons why they are not considered or why they were not presented as a possible treatment option. CSC’s Frankly Speaking About Cancer Clinical Trials program aims to proactively change this dialogue so that every patient feels empowered to ask the question: ‘Is a clinical trial right for me?’” said Kim Thiboldeaux, CEO, Cancer Support Community. “This new program is just the first step in our commitment to helping bring together and educate those affected by cancer, as well as the general public, on the issue of clinical trials so that together we can increase and accelerate patient enrollment and ensure that everyone knows their options.”

Beginning in June 2015, CSC formed a national advisory board, conducted nearly 30 interviews with key leaders, a national survey of patients and caregivers with more than 580 respondents, and summarized the findings in a white paper report that informed the development of the program's patient education resources. The Frankly Speaking About Cancer Clinical Trials program now offers a full suite of patient- centric materials and is being rolled out with an initial series of 15 workshops across the country, including today’s workshop held at CSC’s Greater Philadelphia Campus.

“I have spent the last 37 years doing cancer clinical trials and am honored to be a part of the Cancer Support Community’s Frankly Speaking About Cancer Clinical Trials program,” said Gerald L. Messerschmidt, MD, Director, Clinical Research Center, Lankenau Institute for Medical Research. “This program will be a crucial instrument in our work to change patient and caregiver’s perceptions of the value of clinical trials. Cancer treatment innovation will advance more rapidly if we educate patients about clinical trials and improve rates of enrollment.”

In addition to the launch of the Frankly Speaking About Cancer Clinical Trials program, CSC will also host several dozen of the hundreds of summits held around the country on June 29 at 28 of CSC’s affiliates, in conjunction with the Cancer Moonshot Summit held in Washington, DC. The Cancer Moonshot Summit will be the very first time that stakeholders representing all types of cancers will convene under one national charge. Attendees at summits across the nation include leaders representing the entire cancer community – including researchers, doctors, scientists, philanthropists, community oncologists, advocates, patients, and survivors. The goal of the Cancer Moonshot is to double the rate of progress in cancer prevention, diagnosis, treatment and care over the next five years and to ultimately end cancer as we know it.

“Nearly 1.7 million people are expected to be diagnosed with cancer in 2016, a staggering number given the advancements that have been made in preventing and treating cancer over the past several years,” Thiboldeaux said. “We all know someone who has been touched by cancer and we cannot wait another 30 years to move the needle — now is the time for progress through education.”

The Frankly Speaking About Cancer Clinical Trials program was developed through the eyes of the patient and offers interactive videos, webinars, an innovative 8-chapter photo narrative, and other materials and resources that can be accessed and found here.

CSC’s work will continue with additional programming coming this summer and fall, in coordination with a diverse group of partnerships with 20 organizations, to continue to better understand the gaps in patient understanding and participation of clinical trials.

Aimee Tysarczyk
(484) 385-2909

Megan McMonagle
(484) 385-2983