What You Need to Know About Insurance Plan Restrictions in Cancer Care

Updated on March 23, 2023

More than one in three Americans will be diagnosed with cancer in their lifetime. Maybe you’ve been lucky enough to avoid it. I haven’t, and know all too well how scary and life-altering it can be for patients and families. Yet, cancer is not the same disease it once was. For many people, huge advances in treatment have transformed it to a chronic condition. And the availability of precision medicine, fueled by innovations in biomarker testing, have contributed to the 27% decline in cancer deaths since 2001. 

Improved cancer treatment has been accompanied by obstacles and inequities in accessing high quality care. Unfortunately, for many patients, the struggle is not whether there is an effective treatment for their cancer, but whether they can access it. Although there are access challenges for many reasons, more and more it is impeded by insurance companies, pharmacy benefit managers (PBMs), and even well-meaning self-insured employers.

Cancer treatment is expensive, costing four times more than other major health conditions, such as stroke or diabetes. This is why insurance policies increasingly include utilization management or UM, which can make it tough to get timely testing, access the right treatments, and provide patients with the care that may cure or control their cancer. UM may effectively manage short-term costs, but it can also create a host of unintended – and expensive – consequences. 

The Unintended Consequences of Common Utilization Management Practices

Here are some of the most common utilization practices and the unintended consequences you don’t hear about from insurers and consultants.  

Limited Coverage of Biomarker Testing 

Recent cancer treatment advances have led to precision medicine, which uses biomarker testing (also called genomic testing) to identify the specific genetic mutations that drive a person’s cancer. These biomarkers are the focus of targeted or immunotherapy, that may cure or control their cancer. Cancers with treatable biomarkers include lung, breast, colorectal and melanoma, as well as some rare cancers, and the list is growing every year. Biomarker testing helps clinicians avoid one-size-fits-all (and typically difficult) chemotherapy and radiation that might not be effective for a person’s cancer, and may not help identify clinical trial opportunities. 

Unfortunately, despite the evidence supporting biomarker-directed treatments, many health insurance policies do not yet adequately cover guideline-recommended tests. Some polices limit the types or stages of cancer eligible for this testing, some claim that biomarker testing is experimental (it is not!), some require unaffordable cost-sharing by patients, and many unnecessarily delay testing by requiring pre-authorization. 

Importantly, these coverage barriers appear to have the greatest impact among racial and ethnic minorities and socioeconomically disadvantaged patients, exacerbating our systems’ already unacceptable health inequities. 

Formulary Design

Formularies specify which drugs are covered and their pricing tier. While insurers and PBMs claim their formularies are grounded in clinical effectiveness and price, the reality tells a different story. Instead, rebates from drug manufacturers often determine which drugs are on formulary, and their pricing tier. Formulary exclusions can create real problems for people with cancer. They can result in patients taking treatments that are not optimally effective or cause significant side effects. As treatment becomes increasingly personalized, policies limiting coverage of drugs to those selected by the PBM may mean the difference between life and death.

Prior Authorization

Prior authorization (PA) can create barriers to timely treatment. While most prescription drugs with PA requirements eventually get approved by insurers, the process can lead to huge delays, and studies have shown that more than a third of prescriptions subject to PA are abandoned by the patient.

Among doctors surveyed by the American Medical Association in 2021, 93% reported that PA was linked to delays in patient care, 91% said PA had negative impacts on clinical outcomes, and one in three doctors reported it had led to one of their patients requiring hospitalization, being permanently disabled, or worse. 

Out-of-Pocket Costs

Insurance companies have been shifting costs to patients for years. But the recent trend toward high deductible health plans has contributed to the epidemic of health care debt in America; co-insurance, where the patients’ cost share is a percentage of a drug’s list price (which is typically far higher than the price the PBM actually pays for the drug); and copay accumulator and maximizers, which do not count financial assistance paid on behalf of a patient toward their deductible or out-of-pocket maximum are all culprits. 

A 2022 study found that 100 million US adults have health-care debt, with 12% owing at least $10,000. Nearly 50% of cancer patients experience financial distress, which is associated with decreased health-related quality of life. In a review of bankruptcies, researchers found that 62% were due to medical debt, despite three-quarters of those in debt having health insurance. 

A Better Way

The goal of health insurance is to help patients access the right treatment at the right time. Employers and others who design or purchase group health insurance plans can insist that their plans prioritize the patient and ensure that cost-control measures are not saving money by denying the care that cancer patients need and deserve. 

CancerCare has created free resources to help employers balance the needs of cancer patients with the escalating cost of health care. Our Prescription Drug and Biomarker toolkits are designed to educate employers about the unintended consequences of UM, understand the critical role that biomarker testing now plays in cancer treatment, and design benefit plans that balance cost with people’s lives.

Photo Patricia Goldsmith Aug 2020 pref copy
Patricia Goldsmith

Patricia J. Goldsmith is Chief Executive Officer of CancerCare. A frequent speaker at national meetings and symposia, Goldsmith was named in 2021 to Forbes Magazine’s 50 Over 50 Vision List, honoring women making an impact on society and culture. In 2022, CancerCare published a free Toolkit that helps inform the benefits package design and decision-making process and offers key considerations when plans include utilization management.