The Voice

Clinical Trials: Courage and Hope

Upstage Lung Cancer recently posted an informative podcast about clinical trials Clinical Trials and Tribulations: Upstage Lung Cancer (Podcast). Guests on the podcast are Diane Legg, Linnea Olson, Lecia Sequist, MD, and Upal Basu Roy, PhD. The discussion included personal experiences with clinical trials, debunking myths about clinical trials and opportunities as well as barriers for patients interested in clinical trials. Whether you are currently undergoing cancer treatment, supporting someone who is in treatment or would simply like to know more about clinical trials, I highly recommend listening to this podcast.

When I finished listening to this wonderful podcast, I thought about how little I knew about clinical trials, beyond their basic purpose to investigate medical, surgical or behavioral interventions for a disease. Listening to the Backstage @ Upstage podcast inspired me to set out to do a little informal research to learn more.

Linnea Olson
Linnea Olson was a tireless patient advocate and a generous spirit who touched and inspired the lives of people all around the world.

Clinical trials are the primary way researchers can evaluate a new treatment. As such, it is possible to learn if a new drug or interventive technology is safe, effective or most suited for certain populations of patients. Health authorities like the FDA regulate clinical trials, and patients are informed about benefits and risks, and can stop at any time. During treatment, patients who volunteer to receive treatment may be able to receive cutting edge treatments, current standards of care, or they may receive a placebo.

Modern clinical trials are not simply offered as a last resort. Today, there are a wide range of reasons for considering a clinical trial. Clinical trials can screen for and prevent disease progression and target those who may best respond to the medication or protocol. Biomarker testing can offer important data to help match a patient with a current trial of targeted therapy. Some patients with advanced disease may prefer a clinical trial over current standard of care to buy more time. In this case, some patients will go on to another clinical trial when it is warranted or gives more hope for effectiveness.   

Unfortunately, in the US, for some time now, estimates are that only 1 in 20 eligible patients enroll in cancer clinical trials. Research suggests that a clinical trial system that enrolls patients at higher rates produces treatment advances at a faster rate and corresponding improvements in cancer population outcomes. So, why do so few patients participate in clinical trials? The answers are complex, and both medical and non-medical. Medical impediments include being too sick to participate in a study, not meeting the requirements, or the trial is offered at a medical facility that is inconvenient for a patient to get to. Non-Medical barriers to participation in clinical trials include a treating physician who will not know about or consider a clinical trial as an option for their patient. There are also financial burdens and hidden costs for both the participant and provider.

If you are interested in a clinical trial, the best course of action is to approach your treating physician and discuss the pros and cons of a clinical trial for yourself or a loved one. It is essential to be aware that there are options and to work as a team with medical staff to help evaluate the pros and cons to each.

Following our podcast on clinical trials, Linnea Olson lost her life to lung cancer. However, as Thomas Lynch, MD said, “Linnea changed the world in a profound and lasting manner. Her courage and grace touched so many.”

Some helpful online resources are:

Finding a Clinical Trial | National Institutes of Health (NIH)

Get Healthy Stay Healthy – A Healthier World Begins With You