Published on February 3, 2020
Report on Cancer Clinical Trials Conference
Austin, Texas, February 1, 2020 – I am writing to you as someone living with two cancers and who has benefited from participation in two clinical trials. For two days, I met and mingled with the people who help run cancer clinical trials around the U.S., and they are frustrated - so are patients, including some I invited to join me and almost 700 who gave me messages to take the assembled group.
At a time of explosion in clinical trials, and especially in cancer where genomic understanding and immunotherapies have the prospect of revolutionizing care, too few patients are in trials. This means many fail to get a shot at “tomorrow’s medicine today” and scientists fail to get the answers the FDA appropriately requires for approval of new drugs.
The disconnect is when patients understand the potential benefit of being in a trial, the protection of their safety, and the possibility there may be financial support for their participation, they are more, likely to choose to be in a trial. Yet ,all too often, that patient education is not forthcoming.
So we have more trials and less accessible information and support. The result: slow movement of many cancer clinical trials, patients dying who otherwise could have benefitted, sponsors losing millions, and the availability of breakthrough approved medicines delayed.
What stands in the way? For my part, I reflected on my own experience and then invited cancer patients who follow PatientPlower.info to write to me and participate in a brief online survey. Taken together, we received 700 responses – 666 to a detailed survey.
The bottom line: The majority of information-seeking patients are very interested in participating in a trial to benefit themselves and the cancer community. But, as they reported, their initial healthcare team never informed them about trials half of the time. And when many patients inquired, their team, for a variety of reasons, did not encourage participation. How come?
Doctor Responses to Cancer Patients Asking About Clinical Trials
“There are no trials for you around here.”
“You are not sick enough.”
“I don’t know of any.”
One patient said her team continually “blew her off” when she asked about trials.
Many of our respondents went the extra mile, to another doctor or major center, and eventually enrolled in a trial. Most said it made a big difference, and they would do it again.
Presentation of Patient Survey Data on Cancer Clinical Trials
I presented this data at the conference of the people who run cancer clinical trial sites and the organizations that support them, including big pharma. The attendees clearly acknowledged they have a problem – especially a communications problem. But so far there has been no clear leadership to bring the competing companies and clinics together with a common and widely publicized message that participation in a trial should be discussed and considered at any point in a patient’s cancer journey. So we have more cancer trials. And yet, participation by some estimates at only 5 percent of adult U.S. cancer patients.
I brought a team of patients with me to the conference. Austin area people who, like me, believe they are alive today because of trial participation. Almost all of them faced the same barriers in discussion with their first healthcare provider.
I don’t mean to make grassroots physicians out to be villains. Often they simply are overworked and not in the know about the changing landscape of medical research, especially in rare conditions. Or they may be skeptical of something new. Therefore, while we must do better educating the doctors. We need to encourage savvy consumerism among cancer patents and supporting family members – even as they struggle to overcome the terror of a cancer diagnosis.
We can do this. We have educated Americans about smartphones, the intricacies of online banking, online sports betting, and how to buy a car online. We have given the consumer convenience, control, and confidence. Cancer patients deserve that too and the research industry stakeholders should come together to facilitate it. Otherwise their trials will continue to languish, and needy patients will suffer.
I know many patients join me in supporting leadership to turn this sad situation around. It helps us all. We can't afford to wait.
I welcome your comments.
Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.