How Can Financial Barriers to Patient Participation in Clinical Trials Be Addressed?

Subscribe through iTunes and Google Play. Welcome to this ASCO in Action Podcast. This is ASCO's monthly podcast series where we explore policy and practice issues that impact on oncologists, the entire cancer care delivery team, and the individuals we care for, people with cancer. My name is Clifford Hudis, and I'm the CEO of ASCO, as well as the host of the ASCO in Action Podcast series.

For today's podcast, I'm really delighted to have Dr. Beverly Moy joining us. Dr. Moy is a medical oncologist at the Massachusetts General Hospital who specializes in breast cancer care. She's also an Associate Professor of Medicine at the Harvard Medical School and a longstanding and dedicated ASCO volunteer. She led the ASCO roundtable on addressing financial barriers to clinical trials, and she was one of the authors ASCO's policy statement providing recommendations to address this important issue. So our conversation today will focus on the existing financial barriers to patient participation in clinical trials and how policymakers, trial sponsors, institutional review boards, and other stakeholders can help remove and overcome those barriers Dr. Moy, welcome and thank you for joining me today.

I'm so glad to be here.

By way of background for our audience, only a small percentage of patients with cancer ever participate in clinical research. And yet, we know that certain groups, especially people from low socioeconomic status are underrepresented even in those trials. To give a little bit of shape to that, no more than 3% or 4% of adults with solid tumors participate in research studies. And even then, that number over-represents certain higher socioeconomic groups and underrepresents others. Can you tell us why this issue is important to be addressed, and, furthermore, how we might improve the diversity of clinical trial participation?

So I think it's incredibly important that to improve clinical trial participation among underserved groups. When I think about how we can provide the highest quality cancer care, we really can deliver three basic things-- the best possible standard cancer therapy, the best possible supportive and palliative care, and the best possible novel or experimental therapy. So we know that clinical trials are crucial to the advancement in cancer care. And in the current genomic era, sometimes these trials may even represent the best possible treatment option for some of our patients with cancer. We also know from the medical literature that patients who participate in clinical trials tend to do better and sometimes even live longer.

So when access to the best possible experimental therapy is threatened, optimal cancer care becomes impossible due to financial barriers. And this is an example of social injustice, where poor or underserved patients are being deprived of quality cancer care. So I think that improving the diversity of clinical trial participants is also critically important.

When we determine a new treatment's effectiveness, the cancer clinical trial participants really should reflect the general population of patients with cancer. So as you already said, just a small percentage-- no more than 5%-- of all adult cancer patients in the United States participate in clinical trials, most of whom are white and are from a higher socioeconomic class. That means that the results of our clinical trials are less generalizable, and we need to do better.

So I think that's a longstanding issue, and I know that many listeners are appreciative the efforts to address it. But it raises a question about the underlying reason for this. And one of them, I think, is financial, that is financial barriers to participation, financial barriers to care, and what is now called financial toxicity. As an aside, we recently conducted a national cancer opinion survey-- we do this every year-- and one of the striking observations this year was that 57% of Americans say that if they received a cancer diagnosis, they wou