Information Could Save Your Life
Why getting new treatments to patients is so important and so difficult, and what we must do about it.
(Part 1 of a 3-part series)
When it comes to cancer, inefficiency kills. Too often, new treatments exist, but patients and their doctors are unable to find or access them. The system that we expect to support us after a cancer diagnosis simply isn’t accessible or doesn’t even exist.
Consider Norman, a lifelong fisherman on the south coast of Massachusetts, who was diagnosed with colorectal cancer last year. His general practice doctor referred him to an oncologist at a hospital nearby. Norman really liked his oncologist, Dr. Harris, who was empathetic, smart, and determined to help Norman overcome his illness. Together with Norman’s wife, Eileen, Dr. Harris and Norman did a ton of research to find care options. Special tests were ordered to look into his cancer DNA for clues, and there were some interesting findings, but the reports didn’t lead to any treatment options that were specifically right for Norman, due to his prior treatment history and his inability to travel for care. The hospital where Dr. Harris worked had an active clinical research program, with dozens of trials available. However, none of those seemed that appealing; they just weren’t for the newest treatments that he was hoping to access through trials. Ultimately, Norman followed the standard care guidelines for colorectal cancer treatment, including several rounds of chemotherapy. It didn’t go so well, and he passed away last month.
Reviewing Norman’s case, it turns out that there were, in fact, cancer treatments that might have been suitable for him. They were available in clinical trials, in another city not so far from his home. However, these trials were invisible to Norman and his care team. Why? Because the system we all want to believe exists doesn’t.
Although this Norman isn’t real, he represents the stories and experience of many patients and families across the United States. While 25% of patients could qualify for clinical trials, less than 5% of adult cancer patients actually participate. There is room to enroll over 250,000 additional patients into trials. This is a crisis. While standard of care works well in many cases, the development of new treatments offers hope for those for whom there is currently no cure, for those whose lives could be extended with new approaches, and for those for whom quality of life could be improved with less damaging treatments. People are dying without accessing treatments that may be able to save their lives. Participating in clinical trials can provide patients an opportunity to contribute to scientific progress, something that is important to many cancer patients, who think beyond their own care.
In doing so, patients could help to overcome dismal trial-recruitment metrics. 80% of cancer clinical trials do not meet their enrollment timelines, and this slows the broad introduction of new treatments to all cancer patients.
Why is this happening? It’s not for a lack of effort or interest. When surveyed, the majority of patients indicate they would be amenable to participation in clinical trials. Physicians, too, recognize that trials may be an important care option for their patients to consider, and they seek to enroll their patients when possible.
Today, there are two ways that a patient enrolls into a clinical trial. Either the patient’s physician is familiar with a suitable trial before they even see the patient, or a trial is presented to the physician in the natural workflow of cancer care. This can be through a diagnostic report that includes treatment recommendations, or in point-of-care decision-support software. Any enrollments beyond these scenarios require proactive searching by patients and their physicians, and this rarely works.
Information about clinical trials is opaque, unsearchable, and incomplete. Searching for trials is a laborious and frustrating process; the key ingredients for finding a trial is time and perseverance. That’s a tall order for patients, their stressed family members, and their overworked physicians.
Last month, Vice President Joe Biden described the mission of the Biden Cancer Initiative as bringing the “urgency of now” to system-level improvements. To me, that means making it possible for every patient to find and access a clinical trial for an emerging new treatment, wherever they are, in their urgent moment. I am proud to have recently joined the Initiative to lead an effort to double clinical trial enrollment nationally.
We have to make it easier for patients and trials to find each other.Doing so will save lives for some of the patients who access effective new treatments through trials. Even more people will benefit when those treatments are proven faster and made available to everyone.
Follow-up posts will describe the specific issues plaguing trial enrollment and a systematic approach being facilitated by the Biden Cancer Initiative to foster a more effective ecosystem for patients and trials to find each other.
