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An Actionable Framework to Address Cancer Care Disparities: A Call To Action

Health equity has been top of mind for many this past year, in large part because of the impact of the pandemic especially on people of color and underserved communities.

Now that we recognize that health equity is not a reality for far too many, the question remains what are we actually going to do to make certain that everyone has the tools they need to pursue a life of health and healthy behaviors? And more specifically, what are we going to do in the cancer care sphere—from prevention to diagnosis to treatment to end-of-life care—to address the glaring inequities that have cemented themselves into the way we approach cancer treatment for underserved communities?

That was the question asked by a workgroup brought together by a number of organizations, including some well-known non-profits, federal agencies, nationally recognized cancer centers, professional organizations and corporate partners among others. 

The result was a paper recently published in the journal JCO Oncology Practice outlining an actionable framework for medically underserved populations, a document which reflects the thinking of experts who are truly experts, who have walked the walk, understand the issues intimately, and whose recommendations have been tested in real life.

As noted in the report, agreements were made to focus on certain target minority populations (including African Americans, Hispanic, Asian American, American Indian and Alaska Native) and medically underserved populations (including rural, aged, adolescent or young adult, LGBTQ, differently abled, immigrants and refugees, and under- and uninsured).

The framework focused on high-prevalence cancers including breast, lung, blood, prostate and colorectal, while centered on four areas of interest: screening, diagnosis, treatment and survivorship. The primary emphasis, according to the report, was on addressing barriers to access within and between these various points on a cancer journey.

As the framework progressed, the panelists became enmeshed in some of the problems that many of us (especially those with cancer and their caregivers) are all too familiar with. Among these barriers are lack of coordination between steps in the journey and between clinicians providing the care. Financial barriers are also no surprise to many, not to mention that we really don’t have data resources such as electronic medical records which help make the journey easier, monitor care, and anticipate what problems might exist such as failing to keep follow-up appointments. Distrust of the healthcare system, based on personal experience or societal impressions was another factor that had to be considered.

There are far too many recommendations in this report to outline here. Suffice to say, they cover the gamut of thought on what we need to do to improve cancer care and advance health equity, especially when patients transition from screening to diagnosis, from diagnosis to treatment, from treatment to survivorship and across the entire continuum of care. 

From a high level perspective, the report acknowledges the need to provide adequate and effective patient navigation to support those with cancer and help guide patients and families through their journeys with the best prospects for cure or control of their disease. 

We desperately need community engagement and participation, which is vital if we are to address the unequal outcomes experienced by too many when it comes to cancer diagnosis and treatment. We also need to change our healthcare systems, to make them more responsive to the needs of disparate communities. We can talk, and talk and talk and talk. What we need is to get more institutions engaged in actually walking the walk. We must address directly the barriers and the mistrust that are core to the understanding of why outcomes are so dismal for too many.

Then there is the reality that too many people face immense financial challenges following a diagnosis of cancer. The recommendations in this report that we address those challenges rings so true not just for those who are “underserved,” but for all of us. 

As stated in the report, “They also emphasized the need for adequate insurance coverage and for SDOH* focused strategies (that are) at the heart of policy improvements.” We need to recognize that many of us need some help when it comes to paying for unexpected and unplanned cancer care. Financial vulnerability cancer care knows no boundaries. (* My note: SDOH stands for “social determinants of health”; think housing, food and income as examples)

This report helps us identify the problems and provide a framework to seek solutions. What we need now is a mechanism to take action based on that framework. Real action. Meaningful action. Results-oriented action. 

It is far too easy to get lost in the conversation of health equity, to hit the ball back and forth between players, to give lip-service to addressing the deeply routed problems that have led us to that place. 

The time has come to take that first step: recognize that we have a problem, then take the necessary steps to assure that everyone has the opportunity to get the help they need to have access to appropriate cancer care in a way they understand and comprehend, and—importantly—can participate in, especially when it comes to making important decisions when options need to be considered.

We need to engage people, and we need to engage communities. This actionable framework to address the disparities in cancer care is a first step in what is undoubtedly going to be a much longer journey.