ASCO 2018: Advancing From Precision Medicine to Precision Care

Earlier this month I made my annual trek to Chicago to attend the American Society of Clinical Oncology (ASCO) Meeting — a convening that attracts 32,000 oncology professionals and perhaps represents the single most significant gathering about cancer that takes place all year.

The average person may only hear about one discovery that breaks through a cluttered media environment, such as the story suggesting women in the early stages of breast cancer could forgo chemotherapy.

While this and a handful of other stories permeate the mainstream media, it is important to note that more than 2,500 research-related abstracts were accepted for presentation on-site at the meeting, and an additional 3,350 abstracts were selected for online publication. In fact, my organization, the Cancer Support Community (CSC), had three abstracts selected on Melanoma, Gastric Cancer, and Eating and Nutrition.

The theme of this year’s ASCO was an important one: Delivering Discoveries: Expanding the Reach of Precision Medicine. The National Cancer Institute defines precision medicine as “an approach to patient care that allows doctors to select treatments that are most likely to help patients based on a genetic understanding of their disease.”

As I think about those thousands of abstracts available at ASCO, it occurs to me that instead of calling the conference Expanding the Reach of Precision Medicine, ASCO should have called it Advancing from Precision Medicine to Precision Care because I was heartened to see that the data presented did not just focus on the medical side of cancer, but took the whole of the cancer patient experience into account.

Case in point, many discussions focused on the growing financial burden of cancer on the patient — what we now refer to as financial toxicity since financial strain has become widely accepted as a side effect of cancer treatment. Our toll-free helpline fielded more than 3,000 calls just last year from patients seeking assistance on how the treatment-related expenses would affect their household income.

Just like financial toxicity, it is important to capture the concerns and trends of patients’ concerns. In our organization’s case, the abstracts CSC released at ASCO examined everything from patient-physician communication and quality of life to impact on the family. It is now well-documented that in order to achieve the best outcomes for patients, we must treat the whole person — not just the disease. Screening patients for distress — asking them about their concerns regarding finances, family, transportation, anxiety — and helping them with a plan to address those issues — is now becoming a standard part of clinical practice. In many ways, distress screening is like genomic testing. Just as a medical test can determine a gene mutation and guide a patient to the best treatment, distress screening can assess practical and psychosocial concerns — including risk of depression — and guide a patient to more targeted and customized solutions and interventions.

However, when I consider the sheer volume of abstracts selected for the meeting, not to mention the thousands of submissions I imagine were rejected, I’m just not sure how medical professionals keep up with the rapidly advancing science and innovation in oncology.

Even for someone like me who is well versed in the nuances of cancer care and oversees a network that operates in 170 locations and provides $50 million in free services each year, it can make my head spin.

Now imagine how overwhelming all of this is for patients and their families who are facing this steep learning curve while also dealing with the realities of a cancer diagnosis. In the area of precision medicine, the theme of the meeting, patients are trying to understand what types of tests are being offered to them, what types of tests they should ask for, which tests are covered by insurance, how often they should be tested and more.

There have also been rapid advances in the emergence of diagnostic tests and tumor profiling methods to more accurately assess one’s tumor to see if it might better respond to a targeted treatment.

As patients learn about these developments, they may encounter obstacles that make these advances seem out of reach.

We know, for example, that many private insurers do not pay for the Foundation One panel of tests, even though it is now covered by Medicare. And there are other tests that are not covered as well. It is an ever-changing landscape.

Is it that the insurers don’t want to pay for the actual tests, or is it that they don’t want to pay for the targeted and precision therapies, which can be quite costly, that may be on the other end of the test? Shouldn’t all patients have access to the treatment from which they and their medical teams expect they will have the greatest benefit? We know now more than we ever have in our past. As the science of precision medicine and targeted therapy advances, everyone involved in the care of cancer patients collectively has a responsibility to ensure that we are not widening the gap between the haves and the have nots in this country and work harder than ever to level the playing field.

As science advances, on some days it feels like the goal post is moving further and further away from the patient and that the gap in access and affordability is widening. Again, I salute ASCO for focusing more and more on things like financial toxicity and social and emotional concerns.

We need to ensure that, as patients hear about advances released at this important gathering, the findings are not an isolated development in the cancer sector. Instead, this milestone moment at ASCO should be part of an ongoing conversation about removing the obstacles that keep patients from benefiting from the progress. The urgency is too great to take a step back.

Executive Chair of the Cancer Support Community