Facts by an MD, backed by cancer survivors
We spoke with Victoria Manax Rutson, MD, the chief medical officer for the Pancreatic Cancer Action Network, about the importance of clinical trials. Manax Rutson was involved in the development and approval of the drug Abraxane for multiple indications and served as the global medical lead for the launch of Abraxane in pancreatic cancer.
Why do people not participate in clinical trials? Some assume it’s a scary process where doctors experiment on you like you’re a guinea pig. Sounds like something from a horror movie, right?
Well, think again.
Being treated like a guinea pig is one of five common clinical trial misconceptions. And with the national cancer clinical trial enrollment rate under 5 percent, it’s time to dispel the most common myths once and for all.
Myth #1: Patients are treated as guinea pigs.
Fact: Although a clinical trial cannot guarantee better outcomes for every individual, patient safety is a top priority in all clinical trials and patients have rights that protect them.
“What do you have to lose? Do not be fearful,” says four-year pancreatic cancer survivor Larry Clark, who is a two-time clinical trial participant. “The most advanced treatment protocols and opportunities to help [patients] are found in clinical trials.”
Clark, who has endured several recurrences since being diagnosed in 2014, remains steadfast in his positive opinion of clinical trials.
“Not every trial will necessarily be the right fit,” says the 64-year-old retired mayor of Rancho Palos Verdes, Calif. “So if you’re in a trial, you ultimately are the decider of whether the trial is benefiting you are not.”
Myth #2: Clinical trials are for patients who have run out of options.
Fact: A clinical trial is always an option to possibly improve a patient’s journey with her/his disease. By participating, patients may have access to new research options before they are widely available.
Clinical trials enable each patient to play an active role in his or her healthcare.
Above all, cancer patients who participate in clinical research have better outcomes and it’s important to consider enrolling in a clinical trial at diagnosis and during every treatment decision.
We continue to see new clinical trials being developed in pancreatic cancer. These trials in development are beginning to offer even greater options for patients, options for which we have limited standard of care choices and options that put the patient at the center of the trial.
Myth #3: Patients may receive a placebo, not a treatment.
Fact: Placebos are never used in place of the best-known treatment. A patient who participates in a clinical trial will always receive a standard of care (an approved treatment that is most widely used).
With each treatment a patient receives on a clinical trial, whether standard of care or an investigational therapy, they will always be closely monitored. Many pancreatic clinical trials today that include a standard of care arm also include additional research objectives such as tumor analysis, supportive care mechanisms, radiographic imaging, etc. Participating in a trial with a standard of care arm is not always comparable to “standard of care” outside of a clinical trial.
Myth #4: Clinical trials are more expensive for the patient.
Fact: There are two types of costs associated with clinical trials – patient care costs and research costs. Patient care costs, or routine medical care costs, are related to treating your cancer and are mainly covered by your own insurance. Research costs are those related to taking part in a trial, which are covered by the trial’s sponsor.
Patients are strongly encouraged to discuss costs with their healthcare team before enrolling in a trial.
Myth #5: Participation in clinical trials is not important.
Fact: Participation in clinical trials is crucial. It helps us answer questions for patients. Clinical trials give us insight and lead us to better ways to prevent, detect and better understand the disease. Most important, they can help others and future generations of individuals with the same disease.
Scott Nelson, a 12-year pancreatic cancer survivor, also understands the value of clinical trials.
“If I hadn’t stopped to consider my options, including clinical trials, I wouldn’t be alive,” says Nelson, who was diagnosed at age 50 and credits a successful recovery in part to a clinical trial. “I wouldn’t have met my grandchildren.”
However, support is key.
Clark and Nelson, members of our newly formed Survivor Council, both stress the importance of having a support team consisting of caregivers, family, friends and healthcare professionals to address and manage the needs of the patient.
In short, clinical trials are the only way for researchers to make treatment progress and develop new treatment options for all cancers.
We have patients and survivors to thank for the treatments that are available in the market today. Patients need to continue to enroll in clinical trials to improve upon already available treatments.
If you or a loved one is diagnosed with pancreatic cancer, we strongly recommend you explore clinical trials in our Clinical Trial Finder database or by calling a Patient Central Associate at 877-272-6226 or emailing firstname.lastname@example.org. Additional information about clinical trials can be found at www.pancan.org/clinicaltrials.