ASCO CEO Discusses Striking Findings from National Cancer Opinion Survey

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Hello, and welcome to this edition of ASCO in Action. This is ASCO's podcast series where we explore policy and practice issues that are important to oncologists, the entire cancer care delivery team and, most importantly, the patients we care for, people with cancer. My name is Clifford Hudis, and I serve as the CEO of ASCO and the host of the ASCO in Action podcast series.

For today's podcast, I do not have a guest. Instead, I am personally going to share key findings from ASCO's 2018 National Cancer Opinion Survey. We conduct this survey yearly, and we always hope to find interesting information that can help us as we talk to patients, policymakers, and all of the stakeholders in cancer care. This year was no different. Perhaps, the most striking and concerning finding for us this year was this.

Nearly 4 in 10 Americans believe that cancer can be cured solely through alternative therapies. Over the next few moments, I'm going to explore this observation in a bit more detail and then consider some other notable findings from this year's survey. Thanks for listening in. Now, by way of background, ASCO just recently released the results of our second annual National Cancer Opinion Survey.

We conducted the survey in collaboration with the Harris Poll to help us better understand the views held by the US public regarding cancer research and cancer care. One reason that ASCO established this annual survey was our view that by tracking the American public's perceptions of cancer, over time we might be able to better identify opportunities to add useful information and insights that could positively influence public policy.

Therefore, the survey is designed to collect high quality objective data that can be used to understand what the public does and does not know about cancer. We then use this research to help guide ASCO's educational policy and advocacy efforts. This year's survey was conducted online for a one month period. This was between July and August of 2018. Nearly 5,000 US adults over the age of 18 responded to our survey.

This included about 1,000 individuals who currently have cancer or have had cancer in the past. And, as I noted, it always amazes us that we find interesting tidbits in these kinds of surveys, and this year was no exception. I'm going to highlight three areas in particular. These include the role of alternative therapies, access to pain management, and the continued financial burden of care.
ASCO's core values, as many of you will know, include evidence, care, and impact. Given that, we start with evidence, and one of the most surprising findings for us is that nearly 4 in 10 Americans believe that cancer can be cured solely through alternative therapies. And I note that given that research has shown that the sole use of alternative therapies for cancer is actually associated with a much higher mortality rate when compared against patients treated with standard evidence based approaches.

Now for clarity, I want to point out that when we say alternative medicines, what we mean specifically are interventions like acupuncture, diet, so-called enzyme therapy, massage, medical marijuana, meditation, vitamins, herbs, and other supplements. All of that and more, perhaps, in this context, we're referring to them as the sole therapy for cancer, not as complementary treatments where they have arguably different roles and different impact.
It's this potential reliance on them as the sole therapy for cancer that is so concerning. Now even with direct experience with cancer, respondents don't report a very different perspective. For example, even among those who have had cancer, either themselves or have been close caregivers as a family member, for example, a sizable proportion expressed the belief that cancer can be cured solely through alternative medicine.

Younger people, those age 18 to 37, and, to a slightly lesser extent, those aged 38 to 53, are most likely to believe that cancer can be cured through alternative therapies. Clearly, given this, we have a great opportunity in front of us to help our patients, families, legislators, and everyone understand the real limits and the reality of scientifically valid evidence based treatments. And we have an obligation, given the association with improved overall outcomes, to highlight this.

We cannot ignore this widespread belief. Now I want to turn to another issue that's been getting a lot of attention these days, the opioid crisis, and explore what Americans are thinking about the use of opioids for pain management in cancer care. Our survey found that nearly 75% of Americans do not agree that there should be limits on access to opioids for people with cancer. Specifically, most Americans believe that cancer patients should not have their access to opioids limited at all.

Yet the survey shows that accessing opioids right now for cancer pain is difficult for many patients. From the small survey sample that we had of patients with direct experience, 40% of those with cancer who had used opioids within the past year to manage pain or other symptoms reported trouble accessing them. If opioids are an important part of maintaining quality of life and palliating cancer symptoms, then this obviously is an active and real problem.
Highlighting the importance of providing optimal palliative care, we also learned that most Americans support alternative methods of managing pain. And, again, I want to emphasize, in this case we're talking about alternative therapies as complements not as the sole approach. 83% of respondents supported the use of medical marijuana among people with cancer, for example. Here again, however, there is an issue with access.

In a small sample of patients who have reported using medical marijuana within the past 12 months, nearly half, 48%, reported difficulty obtaining it. For those patients with cancer or who have had cancer, who are interested in using medical marijuana, almost 60% of them wish that there was more information available about its benefits for symptom relief. This is clearly a research opportunity for our community.
We believe these views are likely to be heard both federally and at the level of state houses. And we think, therefore, it's important for you, our listeners, to be aware of this widespread point of view. Finally, I want to turn to one of the biggest and longest standing issues, as well as fastest growing issues in health care in general in cancer care specifically, and that is finance. We find that the financial burden is a specific worry for Americans confronting cancer.
On a percentage basis, our survey respondents said they are just as worried about the financial impact of cancer as they are of dying of cancer. Now this doesn't mean that the depth or level of an individuals anxiety is the same, but it does mean that it's on the minds as about as many people. Probing this a little more, if faced with a cancer diagnosis, 57% of Americans say they would be most concerned about the financial impact on their families or about paying for treatment.

And that compares to 54% who said they'd be most concerned about dying or about suffering with pain. So I think this just highlights how central worries about financial toxicity and cost of care have become. Among people who have had cancer, or who have survived it, more than 40% say that they've had barriers. They've experienced barriers accessing care because of health insurance, with deductibles and co-pays specifically being their biggest hurdles.

And what's interesting, as well, is that patients bear a significant burden here, but so too do family caregivers. In fact, among caregivers responsible for paying for cancer care, 3/4 say that they are concerned about affording it. More than half of caregivers say that they or another relative have had to take some kind of an extreme step to help pay for their loved one's care.
Examples include working extra hours, postponing their retirement, or taking on an additional job, even, in some cases, selling family heirlooms. Clearly these findings are in line with other research that has shown that financial toxicity is a growing and very real concern for people with cancer and for their families. And, again, we think it's important for our listeners to be aware of these issues since our sense is that some of these don't necessarily come up, at least not overtly, during routine clinical encounters.
The bottom line is, more of our patients are suffering degrees of financial distress than we may recognize during our busy clinical days, and we need to be both aware of this and help take steps to address it. So with that, I want to thank you for listening in today. As the world's leading organization for oncology care professionals, ASCO believes that it is critical to understand what the public, including individuals with cancer, think of, expect, and need from the nation's cancer care delivery system.

As I mentioned earlier, this year's findings will help inform ASCO's future educational, policy, and advocacy efforts. And we need all of our members to help, as well. Keeping informed is one critical first step, of course. Looking ahead, please know that ASCO's National Cancer Opinion Survey is scheduled to be conducted again next year. And this will give us one more opportunity to drill down even deeper into findings from this year and explore other emerging issues while tracking potential changes in the focus and concerns of the general public we serve.

If you would like more information about the survey, please visit ASCO's website at asco.org and search for National Cancer Opinion Survey. Until next time, thanks again for listening to this ASCO in Action podcast.