Equity in Cancer Care: A Viewpoint From Patient Advocates

December 13, 2018

A panel of patient advocates at the National Comprehensive Cancer Network Patient Advocacy Meeting, held in Washington, DC, discussed the reasons behind and consequences of inequities in cancer care.

Socioeconomic status, geographic location, and education/awareness all play into cancer equity, or inequity, agreed a panel of patient advocates at the National Comprehensive Cancer Network Patient Advocacy Meeting, held in Washington, DC, on Monday.

The panel also pointed out that underrepresented groups of patients don’t just span racial and ethnic groups, but also certain cancer types, and the inequities that these groups face have an impact on both screening/prevention and treatment, which, in turn, impact outcomes such as survival.

With an 18% survival rate, patients with liver cancer are often diagnosed too late to take advantage of an increasing amount of liver cancer treatments available, which is a result of the compounding of several layers of disparity, explained Donna Cryer, JD, president and chief operating officer, Cancer Liver Institute, and cancer survivor.

The reason for this begins with disparities in access to overall healthcare, including hepatitis B vaccination, as most cases of the disease being preventable, she said.

Among colorectal cancer, which is also often preventable, there has been an increase in early onset disease, said Michael Sapienza, chief executive officer, Colorectal Cancer Alliance. However, despite the American Cancer Society lowering the recommended screening age to 45, many insurance companies are not covering screening at that age, leading to undiagnosed disease among the age group.

Laura Ortiz-Ravick, MA, senior program manager, outreach and health promotion, Leukemia & Lymphoma Society, noted that lack of education and awareness also factor in, particularly among groups that are more likely to suffer from certain types of cancer. She gave the example of African Americans, who are twice as likely to be diagnosed with multiple myeloma than other races. However, there’s often a lack of awareness of not only their risk of disease, but also the symptoms and where to go when experiencing such symptoms.

For patient populations like these, it is crucial to build community initiatives, including partnering with different community leaders, as well as doctors and experts, to speak at public forums like churches and spread awareness, she explained.

Once patients are diagnosed, access to care and treatment is most often hindered due to financial concerns, the panel agreed.

Patients forgo cancer care because they can’t fill their gas tank, explained Lynette Bonar, RN, MBA, BSN, FACHE, chief executive officer, Tuba City Regional Health Care Corporation. When resources that help with these costs are tapped into, patients will go. But without these resources, they often can’t.

“With oral medications, we’re hearing more and more from our community that the copays and coinsurance for some of these Part B drugs are getting more expensive, so that’s a major barrier,” added Sapienza. Among his Colorectal Cancer Alliance patients, Sapienza said 60% or more are coming to the organization because of financial toxicity concerns.

Panelists also brought attention to the cost burden associated with treatment as a whole, which includes not just the cost of the drug itself, but also the side effects/toxicities and hospitalizations associated with it, as well as an increasing number of tests as we move toward the age of precision medicine.

Cliff Goodman, PhD, senior vice president and director, Center for Comparative Effectiveness Research, The Lewin Group, who moderated the panel, joked that patients need an excel spreadsheet, noting how many costs patients need to keep track of. And while there are resources are available to help patients navigate their diagnosis, and the costs associated with it, patients are often unaware that they exist.

“It’s so important for us to pull together and make sure those resources that are available, no matter what type of cancer you have, are more fully known to patients,” said Cryer, who emphasized the importance of having social workers and/or patient navigators available within cancer centers.

She added that these social workers and patient navigators need to be well-versed in all different cancer types, as resources and funding vary among cancer type.