Kristie L. Kahl
Patients most often seek advice from their health care providers regarding their cancer treatment options, especially when it involves enrolling in a clinical trial. But, outside of the research setting, these conversations do not always happen between patients and their physicians.
“I think when a person is diagnosed with cancer, in most cases, they come to their diagnosis with very little information about cancer,” explained Linnea Olson, a patient advocate with non-small cell lung cancer (NSCLC). “You are put in a position where you are immediately called upon to make some very big decisions while you are also just trying to deal with all of this emotionally and physically. So, you rely very heavily on your oncologist to be almost like the captain of the ship, and you are the crew. You really need them to be good at what they do.”
It is estimated that approximately 58 million participants are needed to meet the demands of enrolling patients in to clinical trials in the United States, yet 20 percent of research sites fail to enroll even a single patient, according to TransCelerate BioPharma.
TransCelerate BioPharma – a non-profit organization dedicated to improving global health by simplifying and accelerating research and development of innovative new therapies – recently launched its One Person Closer campaign to address just this.
The campaign is designed to increase awareness of the need for clinical trial participants by inspiring healthcare professionals to consider clinical research as a possibility for their patients, incorporate the topic into their daily practices, and have meaningful conversations with patients about opportunities to participate in clinical trials.
“It can take way too long to execute research, in large part because not enough people are participating in clinical trials or aware of them,” Joseph Kim, senior advisor of clinical innovation at Eli Lilly and Company and Clinical Research Awareness Campaign lead for TransCelerate's Clinical Research Awareness initiative, said in a press release.
“Physicians, nurses and other health care providers are important intermediaries here who can help us overcome this critical challenge by incorporating the topic of research into their daily practice.”
Through the photojournalist campaign – featuring video vignettes of 12 patient advocates, health care providers and researchers sharing their stories – aims to “put a human face on research and development.”
In 2005, Olson, who was 45 years old at the time and had never smoked, was diagnosed with stage 3 NSCLC. As a result, she underwent a left lobectomy and adjuvant chemotherapy until a new nodule was found in her lung immediately following treatment.
With limited options at the time, Olson’s health care team treated her using the “watch-and-wait” approach. By 2008, Olson developed 33 more nodules in her lungs, upping her disease to stage 4 and giving her a grim prognosis of just three to five months to live.
After being tested for genetic mutations, Olson’s oncologist discovered she had an ALK gene mutation, qualifying her to enter her first phase 1 clinical trial.
“I was the fourth person in the world with NSCLC to go on trial for Xalkori (crizotinib) and had a remarkable response,” said Olson. “Now, this many years later, I am currently enrolled in my third phase 1 clinical trial and I’ve been stable for almost four years now.”
Olson attributes her first phase 1 clinical trial to saving her life, “I was truly out of options,” she said. “In my particular case, I was diagnosed in a community hospital, and had I stayed there, rather than moving my care to a large research hospital, I’d be dead.”
However, this decision was not without hesitation. Olson explained her reservations were stemmed from the death of another patient in the trial, prior to her joining. “I hoped I wasn’t making a choice that would hasten my death because of what happened to the other participant.”
Still, her limited amount of options is what pushed her forward. “I didn’t have very clear-cut options. It was a different time as far as hopefulness, but the way I understood it immediately was that three of the options offered no hope, and the clinical trial offered a slim, sliver of hope.”
Through the campaign, Olson recommends for patients to be their own advocates by educating themselves using online resources.
“What happens is that the patients who have access to this cutting-edge care want to spread the word and encourage others to ask questions of their doctors that they might not have thought of otherwise,” Olson said. “For instance, have they been tested for genetic mutations? If indeed a patient is willing to go this route of a clinical trial, they really do want to turn over every stone, and their doctor needs to understand that to keep them as informed as possible.”
For more information, visit https://www.facebook.com/onepersoncloser