A profound, difficult, seemingly impossible human journey begins with the words, “you have cancer.”
Over the past decade, advances in cancer diagnosis, genomics, targeted and immunological therapeutics, and the advent of precision medicine solutions for patients with advanced stage, relapsed, and persistent cancers have markedly improved patient survival outcomes.
Data gathered by the American Cancer Society document the profound impact of these revolutionary advances in care: over the past two years, cancer survival rates have improved by the greatest percentages ever documented.1 These advances have changed the meaning of a cancer diagnosis, bringing hope and life to patients and families facing a cancer journey.
Yet, the benefits of these advances in care are not consistently realized by all patients and families. Care and outcome disparities persist, in part driven by inequitable access by many patients and families to the individualized care, aligned clinical expertise, and individualized treatment innovations that could produce better survival outcomes.
The burden of cancer risk and diagnosis is experienced by those who are historically underserved, live in poverty, or those who live in rural areas; disparities in care access further compound the adverse outcomes experiences by these vulnerable patient populations.2,3,4
Improvement in healthcare coverage and decreases in the proportion of the population that is uninsured reflect the impact of the Patient Protection and Affordable Care Act. However, all is not well. Far too many patients and families directly experience the sad reality that expanded coverage does not necessarily translate into more equitable patient access to life-saving care services.
Some of the blunt force methods used contain costs result in the creation of additional barriers to care access that prevent cancer patients and their families from benefitting from the full breadth of cancer care advances.
While there is a national imperative to improve the quality and affordability of care, many of the techniques that are effective in controlling broad population costs, including the creation of narrow networks and capitated pre-payment for care services, are ill suited for delivering care to patients with cancer.
California has been at the vanguard of expanding statewide healthcare coverage within the state. Linked efforts to aggressively control costs have led the dramatic growth in the proportions of Medicaid and Medicare beneficiaries, and those beneficiaries who are covered through either commercial or exchange health plans, who are enrolled in plans that utilize restricted oncology networks.
In California, the proportion of Medicaid (Medi-Cal) beneficiaries now are enrolled in managed care plans is nearly 80%. This is a likely harbinger of what is to come nationally as the focus upon expansion of healthcare coverage and control of costs continues.5
While narrow networks can effectively control cost for other conditions, oncology pose a unique challenge due to increasing complexity of the specialty and the not infrequent need for specific specialty or technology expertise, which may necessitate access to an academic center.
The experience to date has revealed that under this model “… arranging specialist referrals for patients in these settings is an ongoing challenge” and that the model has been particularly problematic, “especially for people with complex health care needs.”5
A net result of this is that access to NCI designated comprehensive cancer centers and academic cancer centers, such as those who lead practice guidelines development for the National Comprehensive Cancer Networks, is precluded by network design for many patients.6,7
Following the creation of the national and state healthcare exchanges under the ACA, many of these centers were excluded by design from a large percentage of payers’ narrow networks.8 This suggests that over time, if left unaddressed, a larger percentage of cancer patients will not have access to the expertise and research offered by leading cancer centers.
While the managed care model may be suitable for large populations of patients with lower risk conditions, cancer care is different because of the acute, life-threatening nature of the diagnosis, the hyperdynamic state of advances in what constitutes best practice, the difficulty of replicating necessary care expertise within a limited clinician network, the importance to timely access to clinical trials, the increasingly subspecialized nature of treatment knowledge, and the need for an aligned care team that is fully focused upon the totality of the patients’ differentiated care needs during the full course of treatment.
For those patients with rarer and more complex cancer types, there is a survival advantage in timely and appropriate access to NCI comprehensive cancer centers and academic cancer centers.9 An imbalanced, disproportionate focus upon price, in the absence of adequate consideration of the quality of care, survival outcomes, or patient experience has both created, and is the basis for, an incorrect belief that applying traditional managed care techniques is synonymous with delivering value-based care.
In the quest to control costs we have lost sight of the needs of the people whom we are seeking to serve, and neglect to take into account how cancer patients and their families might assess the value of the care they receive.
Beyond these considerations, it is worthwhile reiterating that the burden of the inequality in care access and survival outcomes is shouldered by the most vulnerable, including those who by virtue of economics or being part of an underserved population, face the greatest obstacles to high-quality, expert-guided innovative cancer care. We believe it is a moral imperative of an advanced and just society to address these healthcare disparities.
For these reasons, City of Hope has launched an initiative called Cancer Care is Different to give voice to the cancer patient, to highlight their unique vulnerability, their urgent care needs, and to address the systems-based barriers of access to the right care at the right time.
For patients who are diagnosed with life-threatening and complex conditions, we want to ensure that patients and families benefit from timely access to the best level of care expertise and have the right to benefit fully from the full breadth of relevant cancer care advances, including access to relevant clinical trials.
As part of this initiative, we supported California State Sen. Susan Rubio (D-Baldwin Park) in developing a resolution, which she introduced into the California legislature, and is directed at recognizing a differentiated Cancer Patients Bill of Rights.
A growing coalition of organizations and advocacy groups, including the American Cancer Society Cancer Action Network, California Chronic Care Coalition and International Myeloma Foundation, which are dedicated to ensuring equitable patient access to the most effective care possible, are supporting the Cancer Patients Bill of Rights. We believe that these rights should be based on the following core principles:
Cancer patients have a right to fully understand their diagnoses and be informed about treatment options in culturally appropriate and understandable languages.
Cancer patients have a right to transparent and timely processes that ensure direct access to oncology specialists, diagnostic testing, and accurate interpretations of those tests.
Cancer patients have a right to timely access to cancer subspecialists who have expertise in the treatment of their subtypes of cancers when complex decisions are needed.
Cancer patients have a right to direct and prompt access to medical treatments for pain management and other services that support their overall health.
Cancer patients have a right to direct access to National Cancer Institute-designated comprehensive cancer centers and leading academic medical centers for the management of complex cancers that require multiple experts or high-risk or emerging therapies.
Cancer patients have a right to timely access to relevant clinical trials, medical research, and cutting-edge innovation, including evidence-supported precision medicine.
Another key component of the Cancer Care is Different initiative is the launching of a website (www.cancercarediff.org) where the general population, patients, policy makers, politicians, legislators, advocates and cancer care delivery stakeholders can, in one location read about advances in cancer, data regarding access issues, patient stories, the Cancer Patients Bill of Rights and the benefits of NCI-designated and leading academic cancer centers.
The cancer journey may begin with an unsettling moment, laden with anxiety and fear, but advances in cancer treatment and early access to effective care can reframe the journey into one that is humanely navigable in a way that may culminate in a restoration to health and wholeness.
As healthcare coverage expands, we need to ensure that it translates into a commensurate expansion of access, especially for the most vulnerable members of our society. Some health plan, state and federal policy administrators argue that this cannot be achieved affordably.
While this resistance may be based upon valid concerns regarding escalating healthcare costs, we believe that the best approach toward achieving affordability and transparency must begin with the rejection of any model that passively accepts health care disparities for the underserved populations as the price of achieving affordability.
Once we acknowledge the systematic failures in equitable access for all Americans, some of which have been exacerbated by well-intended efforts to expand coverage and control costs, only then will we be open to discovering alternative solutions by addressing the key unanswered questions:
Does expert care for complex cancer patients lead to lower total cost of care; can greater accrual into clinical trials lead to better outcomes, faster discovery and defrayed cost of care; are there opportunities for savings in other parts of the cancer delivery value chain; what is the overall impact on health, wellness and productivity when access to expertise is limited?
The Cancer Patients Bill of Rights is a necessary step forward toward the full realization of an equitable health system. By integrating these core values into our evolving cancer ecosystem, we can ensure that more Americans will benefit from this time of unparalleled discovery and developments in science.
Siegel RL, Miller KD, Jemel. Cancer statistics 2020. CA – A Cancer Journal For Clinicians. 2020;70(1):7.
American Association for Cancer Research (AACR). AACR CANCER DISPARITIES PROGRESS REPORT 2020. https://cancerprogressreport.aacr.org/wp-content/uploads/sites/2/2020/09/AACR_CDPR_2020.pdf
Parikh-Patel A, Morris CR, Martinsen R, Kizer KW. 2015. Disparities in Stage at Diagnosis, Survival, and Quality of Cancer Care in California by Source of Health Insurance. Sacramento, CA: California Cancer Reporting and Epidemiologic Surveillance Program, Institute for Population Health Improvement, University of California Davis.
Unger JM, Moseley A, Symington B. Geographic Distribution and Survival Outcomes for Rural Patients With Cancer Treated in Clinical Trials. JAMA Netw Open. 2018;1(4):e181235. doi:10.1001/jamanetworkopen.2018.1235
Tatar M, Paradise J, Garfield R. Medi-Cal Managed Care: An Overview and Key Issues. KFF. Published March 2, 2016. https://www.kff.org/report-section/medi-cal-managed-care-an-overview-and-key-issues-issue-brief/
Migneault J. Narrow Insurance Networks Can Limit Options for Cancer Care. Health Payer Intelligence. July 7, 2017. https://healthpayerintelligence.com/news/narrow-insurance-networks-can-limit-options-for-cancer-care
Caffrey M. Narrow Networks in Cancer Care: Tough on Patients but Here to Stay. AJMC. July 9, 2018. https://www.ajmc.com/view/narrow-networks-in-cancer-care-tough-on-patients-but-here-to-stay
Schatz A, Winckworth-Prejsnar K. Survey of NCI-Designated Cancer Centers Finds Most Are Out-of-Network on Exchanges. AJMC. Evidence-Based Oncolo. 2018;24(11). https://www.ajmc.com/view/survey-of-ncidesignated-cancer-centers-finds-most-are-outofnetwork-on-exchanges
Wolfson JA, et al. Impact of care at comprehensive cancer centers on outcome: Results from a population-based study. Cancer. 2015;121(21):3885.