The Cancer Patients’ Bill of Rights: Helping cancer care find its way again

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Incredible advances in cancer care are of no benefit to cancer patients if they can’t access them. Sadly, for too many cancer patients, our current system places barriers in their path to accessing the optimal clinical care for their diagnosis. 

At first glance, there is positive news. The two most recent annual reports from the American Cancer Society show consecutive improvements in cancer survival for the first time. 

Our deepening understanding of genomics is revolutionizing cancer care and driving the creation of new, potentially curative treatments for cancers that would have proved fatal less than a decade ago. We continue to expand our arsenal of targeted anti-cancer medications and cell-based immune-oncologic therapeutics, pushing the boundaries of what is possible for patients at a previously unimaginable pace. 

But even with these advances and recent expansions in health care coverage, far too many patients lack appropriate access to optimal treatments, excluding them from these revolutionary developments in cancer care. 

Under the protective banner of innovation, expanded access to general health benefits and affordability initiatives, we have grown complacent as a community. We tolerate care that is not equitable or patient-centered, and that does not provide a compassionate experience for our patients. 

The gaps in access to optimal care result in drastic disparities in survival outcomes, especially for patients who are chronically underserved.1 Despite the innovation of recent years, cancer still ranks as the second leading cause of death in the United States.2

Putting that in the perspective of human lives lost, over 600,000 people died from cancer last year alone—comparable to the number of deaths from the COVID-19 pandemic reported in the United States at the time of writing3—leaving behind devastated families.4, 5

We know that many of those lives were unneccessarily lost to cancer because they lacked access to treatments when they needed it most.6 In fact, the 2020 American Association for Cancer Research Cancer Disparities Progress Report revealed that we could prevent 34% of all cancer deaths if socioeconomic disparities were eliminated. 

As a community, we must acknowledge that we have lost our way and answer how we can create an ecosystem that facilitates access and creates meaningful value for all patients and their families. We must be willing to acknowledge that, at some point, we’ve failed our patients and ourselves by being complacent with a system that perpetuates inequities, tolerates suboptimal care and does not center on the patient experience.

For years, we have pursued the admirable goal of value-based care. We have modeled the design of our health system around conditions that are less complex and less immediately life-threatening than cancer. 

Somewhere in this journey, value-based approaches turned into “one-size-fits-many” programs at the expense of our patients. We took the techniques that work for conditions more prevalent, have treatment protocols that are stable over time and for which expertise is abundant, and applied them to the field of oncology, where none of these characteristics are present. 

As a result, conversations have migrated away from what would deliver the most “value” for patients at their most vulnerable time. We unfairly expect community-based clinicians to be all things to all patients regardless of diagnosis, and ask patients and families with complex cancers to fight through seemingly insurmountable barriers to receive specialized cancer care that gives them the best shot at long-term survival.7

If this era of remarkable scientific discovery has taught us anything, it is not just that the biology of cancer is complex and unique. It has shown that cancer care itself is different. Better survival outcomes increasingly rely on genetic and genomic testing to help oncologists deliver personalized care for patients. 

The best chance of a cure is the first chance at a cure: Cancer care uniquely relies on the accuracy and speed of initial diagnosis, choice of therapy and access to appropriate clinical trials.

To course-correct this silent crisis of inequity, our system needs to be structured to account for the differences between primary care and cancer care. But how do we shape a health system that recognizes and values the differences in the cancer patient journey to ensure each cancer patient has appropriate access to the right care at the right time? 

As a first step, City of Hope partnered with the American Cancer Society Cancer Action Network, International Myeloma Foundation and California Chronic Care Coalition to launch the Cancer Care Is Different initiative in 2020. 

This coalition developed an essential set of rights that cancer patients should benefit from throughout their cancer journey: clear, culturally appropriate explanations of their diagnosis and treatment options, timely access to specialists and integrated patient-centered care, information about relevant clinical trials and evidence-supported precision medicine. 

Legislators adopted these principles to become the California Cancer Patients Bill of Rights (SCR-11), a California Senate resolution authored and introduced by State Senator Susan Rubio (D-District 22). 

This first-in-the-nation resolution has strong support from California’s elected officials, many of whom have seen firsthand the devastating impact of cancer in their families and communities. The resolution was passed unanimously by the California State Legislature last month.8

For too long, too many patients have been denied the opportunity to equally benefit from the latest advancements in cancer care. This lack of access has translated quite literally into needless human suffering and lives lost.9

As a community, we have a moral imperative to pursue equitable access to appropriate care. We should pursue that obligation with the same energy and zeal as we invest in biomedical research and innovation. 

The Cancer Patients Bill of Rights can serve as our true north to a health system that delivers clinically appropriate, innovative, lifesaving, patient-focused, high-value care for cancer patients in California—and across the United States. 


References:

  1. https://cancerprogressreport.aacr.org/wp-content/uploads/sites/2/2020/09/AACR_CDPR_2020.pdf
  2. https://www.cdc.gov/cancer/dcpc/research/update-on-cancer-deaths/index.htm
  3. https://www.cdc.gov/coronavirus/2019-ncov/index.html, Accessed August 30, 2021
  4. https://www.cancer.gov/about-cancer/understanding/statistics
  5. https://www.census.gov/quickfacts/WY
  6. https://cancerprogressreport.aacr.org/wp-content/uploads/sites/2/2020/09/AACR_CDPR_2020.pdf
  7. https://ascopubs.org/doi/abs/10.1200/JCO.2020.38.15_suppl.7031
  8. https://www.businesswire.com/news/home/20210819005682/en/Leading-Cancer-Coalition-Praises-Passage-of-First-in-the-Nation-California-Cancer-Patients-Bill-of-Rights
  9. https://cancerprogressreport.aacr.org/progress/
President, strategy and business ventures, City of Hope
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