Author(s):
Josh Schwartz, MD; Matt Shaulis
Every 30 seconds, someone in the US hears the words “You have cancer.” It is a moment that changes life in an instant. Yet, too often, the greatest struggle is not always the disease itself, but the maze of barriers that follow the diagnosis.
Patients and health care providers are forced to navigate unnecessary challenges that make delivering and receiving care harder than it should be. These hidden burdens take many forms: insurance-driven therapeutic substitutions, prior authorizations and formulary restrictions, financial concerns, care navigation, information gaps, mental health challenges, and more. Of all these obstacles, arguably none are more damaging than health care insurers inserting themselves into treatment decisions, undermining outcomes, delaying and disrupting care, and weakening the patient-provider relationship.
Across the country, health insurers and pharmacy benefit managers (PBMs) are forcing one-size-fits-all protocols in cancer care—delaying access to treatment and dictating choices based on their financial bottom line, not patient clinical need. These policies undercut physician preference and compound the emotional toll at a time when patients most need stability and clarity.
One of the greatest barriers facing patients with cancer is created through therapeutic substitution and step therapy policies—insurer-imposed rules designed to protect profits that interfere with the treatment plan chosen by a physician and patient. Under these policies, patients are often required to “fail” or prove intolerability on a different drug or formulary alternative before gaining approval for the treatment originally prescribed by providers, even when the substitute does not align with clinical judgment.
Insurers are overriding physician preference and dictating care based on their profits—a direct intrusion into the doctor-patient relationship. These access barriers have become increasingly common and part of a broader arsenal of utilization and financial management tools, including prior authorizations, formulary restrictions, and more. The names may differ, but the outcome is the same: delayed care, eroded trust, and reduced shared decision-making.
The data support these issues. Drug denials by private insurers are up 25% since 2016, creating access barriers across cancer and other chronic conditions.1 In addition, a 2023 analysis of coverage policies found that commercial health plans’ use of restrictions on oncology drugs nearly doubled—from 17.6% to 33.5% between 2017 and 2021.2 A recent IQVIA survey also found that more than 75% of commercially insured patients were initially denied coverage for a newly prescribed medicine across 5 chronic disease areas; those who eventually gained access faced delays averaging 3 to 5 weeks before treatment began.3 Delays in treatment for cancer patients, specifically, can be devastating.
Take chronic lymphocytic leukemia (CLL) as an example. It is a slow-growing but life-threatening blood cancer that accounts for nearly one-third of all new leukemia cases in adults each year. Patients often require multiple lines of therapy over time, and National Comprehensive Cancer Network (NCCN) Guidelines identify covalent Bruton tyrosine kinase (BTK) inhibitors (eg, zanubrutinib, acalabrutinib, ibrutinib) as preferred treatment regimens. Yet in certain Medicare Part D plans managed by insurers like UnitedHealthcare and Aetna and their PBMs, patients must first demonstrate intolerance on one BTK inhibitor before having access to the drug originally prescribed by their physician.
In CLL, where every patient’s disease biology, biomarker status, and treatment needs are unique, individualized care is critical. Therapeutic substitution practices that restrict parity access in the BTK inhibitor class undermine evidence-based treatment and compromise patient outcomes.
These barriers are contrary to the intent of Medicare’s protected class policy, which was designed to ensure patients with serious illnesses like cancer have timely access to the full range of appropriate therapies. It is yet another example of payers reducing physician preference and treatment choice to a mere financial calculation, to the detriment of patient outcomes.
The consequences of these policies fall hardest on patients. These payer policies can cause potential harm by leading to disease progression and creating treatment gaps that disrupt care at critical moments. They also place a heavy strain on providers, pulling time and resources away from patient care, especially in community oncology programs with limited administrative support.
The bottom line is simple: Treatment decisions should be driven by physician expertise and treatment guidelines, not by insurers’ bottom lines and short-sighted coverage restrictions.
When patients cannot access the treatments their physician recommends or get the support they need, the entire care experience breaks down. These hidden barriers chip away at the foundation of trust between patients and providers. Shared decision-making only works when patients and clinicians can chart a path forward together—without being overrun by payer-imposed utilization management.
In many cases, patients—and sometimes even their providers—do not realize their treatment plan has been altered behind the scenes until care is delayed or affected. Payers often force therapeutic substitution on the back end through pharmacies, leaving physicians and staff to absorb the disruption. When patients later discover that decisions were made without their knowledge, it further erodes trust and deepens frustration.
These payer-related barriers are widespread but solvable. Cancer does not wait, and neither should we. We need a system that meets patients with speed and support.
If we want to improve outcomes and preserve trust, we must confront these hidden burdens head-on. This means greater public transparency, accountability, and meaningful reform in insurance and PBM decision-making. An important step was taken with the passage of the bipartisan Consolidated Appropriations Act of 2026 (CAA 2026), signed into law on February 3, 2026, which includes key provisions from the PBM Reform Act of 2025, which seek to force major changes to PBM business models to lower prescription drug costs for patients and employers. Policymakers should build on that progress by strengthening oversight, addressing step therapy overreach, and protecting clinical decision-making in cancer care. Reforms must also include stronger support for community practices, which often shoulder the work of navigating affordability, access, and mental health care without the infrastructure larger systems rely on.
Without change, these burdens will continue to drain patients and providers alike. It is time to lift them: to restore trust, protect clinical autonomy, and put patients and physicians back in charge of cancer care.
The opinions expressed in this article are solely those of the authors and do not necessarily reflect the views of the publisher, the Association of Cancer Care Centers.
Josh Schwartz, MD, is vice president of Medical Affairs, North America, and Matt Shaulis is general manager, North America, at BeOne Medicines.
ADVOCACY AND POLICY SUCCESSES AT THE STATE LEVEL
At the Association of Cancer Care Centers (ACCC) 51st Annual Meeting & Cancer Center Business Summit (#AMCCBS2025), Wade Swenson, MD, MPH, MBA, FACP of Lakewood Health System reminded us that advocacy is patient care—especially in rural communities. From his clinic in Minnesota, Dr. Swenson is leading the charge against payer-related barriers like prior authorization delays, copay accumulators, and limited telehealth access. His local study showed treatment delays of up to 13 days due to prior authorization bottlenecks—critical time lost for patients with aggressive cancers. But he is not just raising awareness—he is driving change. Dr. Swenson helped pass legislation limiting prior authorization for chronic conditions and certain cancer treatments, proving that even small communities can make a big impact.
“When I’m in clinic, I’m focused on the patient in front of me,” he said. “But when I’m at the state capitol, I’m fighting for all of them.” Want to see how grassroots advocacy is reshaping cancer care? Read the full 2025 Trending Now in Cancer Care: Part 2 report.
Also at #AMCCBS2025, Sucharu Prakash, MD of Texas Oncology did not just talk about policy—he made it personal. In a powerful presentation, Dr. Prakash exposed how PBMs are quietly undermining access to cancer care, especially in rural communities. From patient steering to opaque pricing and discriminatory reimbursement, PBM practices are driving up costs and shutting down independent pharmacies. But Texas is fighting back. Thanks to relentless advocacy, the state has passed a series of groundbreaking laws to curb PBM abuses—banning white bagging mandates, enforcing rebate transparency, and protecting patient choice. “The turning point came when legislators started hearing directly from patients and providers,” Dr. Prakash said. “They saw how vertical integration was hurting people—and they acted.” Want to see how advocacy is reshaping cancer care? Read the full 2025 Trending Now in Cancer Care: Part 2 report for more solutions to payer-driven challenges.
At the second annual Oncology State Societies Policy Town Hall, held on June 25, 2025, multidisciplinary health care professionals, policy strategists, and state oncology society leaders convened to examine the growing role of state-level advocacy in shaping cancer care policy amid continued federal gridlock. Featuring insights from Anna Pugh, president of AGP Strategies, and Nick Telesco, state advocacy specialist at the American Society of Clinical Oncology, as well as case studies from the Rocky Mountain Oncology Society, Montana State Oncology Society, and Tennessee Oncology Practice Society, the discussion highlighted legislative progress in areas including prior authorization reform, Pharmacy Benefit Manager regulation, biomarker testing, and Medicaid access. Speakers emphasized the importance of grassroots advocacy, coalition-building, and patient storytelling in advancing patient-centered policies and improving access to equitable, affordable cancer care. Read the executive summary of the 2025 Policy Town Hall to learn more.
References
At the 2026 ASCO Annual Meeting, the Louisiana Oncology Society received the ASCO Jeffrey C Ward Affiliate Advocacy Award for advancing critical advocacy priorities that have translated into meaningful legislative victories. The Iowa Oncology Society and Washington State Medical Oncology Society were also recognized for their advocacy efforts in 2025 at the meeting, receiving second place awards.
