Meet the everyday individuals whose participation in clinical trials is paving the way for groundbreaking medical treatments.
This document is sponsored by Lilly USA, LLC and the sponsor has sole editorial control.
When a life-changing drug is approved, it’s important to recognize the individuals who made it possible–not just scientists but ordinary people who volunteer to participate in clinical trials. Clinical trials answer important questions, including how well potential medications work, what the optimal dosing regimens are, and whether significant side effects exist. No matter what their motivations for joining a clinical trial, people can find themselves profoundly changed by the experience of contributing to medical research and knowledge–and by making it possible to find new and improved medicines.
The determination to be here for his grandchildren after a diagnosis of mantle cell lymphoma, a rare type of blood cancer, was the incentive for Paul Robertson to take the plunge into the world of clinical trials. After going through several over the past 11 years, the retired Texas minister credits them with extending his life–he was initially given only a few years to live–and allowing him to enjoy the past five years in remission. With four grandchildren now completing his family, Robertson prioritizes time with them, whether it’s playing baseball in the backyard or going fly fishing, a hobby he’s enjoyed for years.
Robertson feels that trust is a huge factor in the decision to participate in a trial, and the rapport he shares with his oncologist and the conviction that his oncologist has his best interests at heart have made him willing to undertake the commitment. While the demands of being a trial participant can seem arduous at first, he says that as time goes on they tend to lessen. And he’s come to appreciate the scientific advances that come from these studies. “I’ve been on the front edge of medicine,” Robertson marvels. “It is very gratifying for me to look back and realize that at least two and maybe three of the medicines I’ve been on are now first-line defenses and therapies for my cancer.”
“It is very gratifying for me to look back and realize that at least two and maybe three of the medicines I’ve been on are now first-line defenses and therapies for my cancer.”
Paul Robertson
For Dallas resident Allison Kuban, a pancreatic cancer diagnosis at age 31 and multiple rounds of unsuccessful treatments led her to enroll in a clinical trial for a new oncology drug targeting her tumor’s uncommon alteration. Although initially a bit anxious, Kuban began to regain her strength as her tumors shrank, which helped her deal with the time-consuming labs, scans, and monitoring involved with the trial.
Formerly a career-driven person, Kuban found that she needed to take a step back from her work during her cancer journey. She recalls that “not having a purpose” was extremely difficult for her during that early time. Now, she understands that being part of this trial enabled her to help shape the lives of other people with her kind of cancer. “To have a new purpose, to promote clinical trials, to show others that you can overcome odds that are given to you is great,” she says. “And I am now able to live my life to the fullest.” In fact, since her diagnosis, she got married, traveled extensively, and even wrote a book about her experience.
Some people choose to participate in a trial even though they have not been diagnosed with the disease being studied. When Bill Sasse first thought about entering a trial for an Alzheimer’s drug, he was mainly concerned about staving off the condition and spending as much time as possible with family and friends. Although the Indiana resident had a family history of Alzheimer’s disease, he exhibited no symptoms himself. For seven years, Sasse and his wife drove 100 miles round trip every month to Indianapolis to participate in a clinical trial that included cognitive tests, MRIs, PET scans, and drug infusions. Not only was Sasse assessed thoroughly during each session, his wife Bambi also conferred privately with researchers so she could let them know if she detected any changes in him.
For the first few years of the trial, Sasse and the other participants did not know whether they received a placebo or the drug, and neither did the people administering the infusions; this is known as a double-blind study. After 60 visits, the trial became an open-label trial, meaning all participants and administrators knew who received the drug or a placebo. At that point, Sasse and the other participants received the drug exclusively.
The trial revealed to Sasse that he does have biomarkers for Alzheimer’s, but so far he has seen no cognitive decline or other symptoms. While he doesn’t know what the future holds, Sasse has come to appreciate the impact of his involvement in the trial and the potential for it to make a meaningful difference for others at risk of developing Alzheimer’s. “I think everybody wants to leave the world a little bit better place than when they found it,” he says. “And for most of us, that doesn’t go further than our little circles of influence–our family, our friends, our churches, our communities, and our work. But only a few people have an opportunity to really impact the greater good of society. And this is one way that individuals like me can do that.”
