BY GREG BROZEIT If you are a myeloma patient and could help doctors and researchers cut the times to develop effective drugs by half, would you do it? If you could do so without having to raise millions of dollars, would you do it? If you answered yes to both of those questions, then learning about and participating in clinical trials should be on the top your “to do” list. A recent poll of patients and physicians commissioned by Memorial Sloan Kettering Cancer Center (MSK) found “the lack of participation in clinical trials may be the Achilles heel” that hinders research.
“Only 35 percent of Americans indicated that they were ‘likely’ to enroll in a clinical trial” and “only 40 percent of Americans have a positive overall impression of clinical trials.” Currently only 3-5 percent of eligible adult cancer patients in the U.S. participate in clinical trials, a fact that, said José Besalga, MSK’s Chief Medical Officer, is causing “a crisis in cancer research and discovery.”
The study lists a number concerns and misconceptions cited by potential clinical trials participants as reasons for low participation including concerns about “side effects,” “uncertainty about out-of-pocket costs,” “inconvenience of trial locations,” and “worries over feeling like ‘guinea pigs.’” Compounding these issues, large percentages of physicians only consider trials for their patients “late in treatment” or as a “last resort.” Additionally, only 32 percent of physicians inform their patients about clinical trials “at the beginning of their treatment.” All of these issues echo Jim Omel’s recent analysis about why clinical trials do not accrue enough patients. Yet, as Jim wrote, patients should know that “clinical trials are cutting edge therapy.” Clinical trials participants also often receive a greater range of diagnostic tests and monitoring. Jim Bond, who was diagnosed with myeloma 24 years ago, credits his participation in 6 clinical trials on drugs like bortezomib and lenalidomide as being integral to his survival. Echoing Dr. Baselga’s thoughts, Jim participates in clinical trials whenever he can because “even if they don’t help me, I know I would help keep advancing knowledge about the disease.” Jenny Ahlstrom, founder of the Myeloma Crowd, has cited the need to increase clinical trials participation as a founding principle of the organization. Clinical trials updates are regular features of the Myeloma Crowd website. “We also value our partnership with SparkCures,” said Jenny, “which simplifies understanding and finding clinical trials. They make it easy for patients to learn about and access trials fitting their needs and desires.” Clinical trials participation is the best and most effective way patients can help researchers to accelerate the pace to develop treatments to cure myeloma. To do so patients must ask questions, work with their physicians to identify what might work for them, and shed the myths and misinformation about the clinical trials process.
“Today's myeloma treatments are yesterday's clinical trials. Common reasons that patients don't participate are based on lack of knowledge,” observed Jenny. “People need to know they can leave a trial if it isn’t working for them. The trial is for them, not the doctor.”
about the author
Greg Brozeit has been engaged in myeloma patient advocacy since 1998. He began working with the Myeloma Crowd in 2015. Prior to that, he consulted with Dr. Bart Barlogie at the University of Arkansas after working with the International Myeloma Foundation for 15 years, where he inaugurated the public policy advocacy program, patient support group outreach and IMF Europe, organizing more than 100 physician and patient education programs. He earned his BA in political science from Loyola University in New Orleans and lives in northeast Ohio.