Uncomfortable waiting rooms. Revealing hospital gowns. Confusing insurance. Exhausting travel between appointments.
These are just some reasons cancer is in desperate need of a rebrand, experts said at this year's SXSW conference.
Oncology was a major focus across multiple sessions, where clinicians and patient advocates called for better access to specialty care, more thoughtful communication with patients and continued collaboration across stakeholders.
In a panel on partnerships, Karen Knudsen, Ph.D., CEO of the American Cancer Society (ACS), called the current cancer patient journey a “deeply byzantine path” that burdens both patients and caregivers.
An academic medical center can be an “ivory tower,” echoed co-panelist Harlan Levine, M.D., president of health innovation and policy at cancer-focused provider City of Hope. Patients must travel to it, not the other way around, and in some cases, pass criteria to even be admitted.
“If we try to live like that in the current ecosystem and where healthcare is going, we’re going to become obsolete,” Levine said during the session. That is why City of Hope, like others on the panel, is collaborating with policymakers, payers and advocacy organizations to move toward a more equitable future in cancer care.
“We can all excel in certain areas, but if we’re not collaborating … the patients at their most vulnerable time … are going to have to navigate between all these stakeholders,” Levine said.
Rebranding cancer through communication
There is a disconnect between the latest science and innovations in cancer and how they reach patients, panelists said. That is not only because of issues around clinical trial diversity, but also due to a lack of effective communication between providers and patients.
“Cancer today is not the cancer of yesterday,” Sarah Krüg, executive director of patient advocacy organization CANCER101, said during a session on rebranding cancer.
Since 1991, the U.S. cancer death rate has fallen 33%. The disease is no longer always automatically a death sentence. Half of people diagnosed survive 10 years or longer.
Yet the Big C still has a terrible reputation. As a life-impact “brand”—the promise of an experience—people rank the disease as the most terrifying, ahead of domestic abuse, hate crime or loss of a loved one, according to branding agency Ogilvy Health. Meanwhile, heart disease is the leading killer of Americans, yet “there’s no heart disease Moonshot,” Krüg noted.
“While cancer perception lags cancer reality, rebranding cancer is not about closing this gap entirely,” Christianna Gorin, Ogilvy Health’s chief growth and strategy officer, said in the session. “But we must start speaking about cancer more intentionally," as doing so will make the cancer brand more reflective of today’s advancements and experiences.
Words associated with the disease matter. “Survivor” is actually a term patients say they don’t like, per Krüg; they prefer “thriver.” As an oncologist, Kathryn Hudson, M.D., director of survivorship at Texas Oncology, said she does not like the notion of “fighting” cancer. It places the onus on patients and their caregivers to get better.
“It’s not an actual battle or war that they are fighting. Cancer is something that one lives with … and sometimes one does not survive that,” Hudson said during the panel.
Widening access through reimbursement
As cancer becomes more sophisticated as a disease, narrow network health plans are now inadequate to meet the needs of patients. And minorities are disproportionately enrolled in these types of plans.
“I always get worried that people confuse insurance coverage with access,” Levine said. “In cancer, the more you narrow your network, by definition, you’re cutting off and creating a new barrier to expertise.” For example, California cancer patients on Medi-Cal, which make up a third of all patients in the state, have been found to have worse outcomes than those on other types of insurance. Their outcomes were similar to those who were uninsured.
Less than half of California cancer patients overall receive care aligned with national guidelines, Levine noted. “The gap between usual care and optimal care is actually widening,” he said.
In an effort to address these disparities, City of Hope worked with the state of California to co-write and pass the California Cancer Care Equity Act in 2022. The bill requires Medi-Cal managed care plans to make a good faith effort to contract with cancer centers that provide specialty care and to notify enrollees of their right to request care at those sites. City of Hope is working to replicate the bill in several other states.
An important part of cancer care that has traditionally faced resistance from payers is patient navigators and other supportive care like behavioral health services, the panelists said. Patient navigation should be provider-led and sensitive to the realities of the patient experience.
“The outcomes are clearly better if you have navigation and if you have behavioral health support,” Levine said. “You can survive the cancer, but you may not survive the journey.”
“The way we assess the quality of care should include access to these kinds of resources,” echoed Clifford Hudis, M.D., CEO of the American Society of Clinical Oncology. A patient’s outcome depends first and foremost on the delivery of high-quality care, he stressed, not lifestyle changes.
Until recently, patient navigation services were not billable. The ACS has paid for navigators around the country in high-needs areas, Knudsen noted, and elite medical centers could leverage philanthropy dollars to offer patient navigation. But as of Jan. 1, 2024, a new rule from the Centers for Medicare & Medicaid Services (CMS) allows providers to now bill for patient navigators. To that end, ACS recently launched a certification program for navigators called LION.
“It was one of those tangible things we could do right now, that we also know based on evidence is a major lever to reduce cancer care inequities,” Knudsen said.