The Emotional Impact of Insurance Delays For Those With Cancer

Administrative delays and insurance red tape experienced by patients with advanced cancer can lead to feelings of fear and mistrust in a healthcare system which they believed would protect them in their most vulnerable state, Dr. Alexandra Zaleta said in an interview with CURE.

This interview followed the publication of Zaleta’s research entitled ‘The Health Insurance Maze: How Cancer Patients Get Lost in the Red Tape of Utilization Management,’ which was shared in the 2025 Red Tape Report by CancerCare. This research was drawn from national survey data of 1,201 patients with cancer and examined how coverage changes and prior authorizations affect timely access to care, highlighting the real-world impact of utilization management.

Utilization management refers to a set of insurance practices used to control costs by determining when, how and if certain treatments are approved. This can include prior authorization and coverage disruptions, which can interfere with timely patient care.

“If you’’re living with advanced cancer, from my perspective, you’’re the last person who should be subjected to additional red tape barriers at all these points of care, especially when your doctor has clearly identified this as medically necessary care,” Zaleta, study author and principal investigator of the CARE Study, emphasized in the interview.

She also serves as associate vice president of Research and Insights at CancerCare, where she functions as an in-house expert on understanding challenges faced by people affected by cancer.

CURE: Given that employer-sponsored health plans are associated with a higher administrative burden, what structural factors might account for their comparatively poorer performance when contrasted with systems like Medicare?

Zaleta: There are many factors at play here, which is why it will take a lot of different stakeholders at the table to help us make real change in this space. The first important thing to point out is that in our survey, many of the people on employer plans also happened to be sicker or have more advanced disease. Curiously, it was the sicker individuals who were facing more barriers that were also encountering more red tape. You would expect or hope for the opposite. If you’re living with advanced cancer, from my perspective, you’re the last person who should be subjected to additional red tape barriers at all these points of care, especially when your doctor has clearly identified this as medically necessary care.

I share that to highlight that it’s not just the individuals in this employer group that are important, but many of these people were sicker and yet facing the most red tape, which is truly concerning.

I believe employers themselves have an important role here. The design and behind-the-scenes factors of employer plans, such as whether an employer is fully insured versus self-insured, changes the kind of flexibility they have in designing the plan and its benefits. So, the nature of the insurance plan an employer can adopt already influences the degree to which they can make determinations about the level of coverage. Sometimes, it’s more in the employer’s hands, and they may be making choices to save their company’ costs without necessarily recognizing what that actually translates to for their employees.

I think many employers want their employees’ wellness and well-being to be at the forefront. They want their employees to be healthy and well-cared for, and sometimes they make choices about benefits design that are, again, intended to save company costs, not fully recognizing the consequences that can arise if, when push comes to shove, someone receives a cancer diagnosis and then needs to access treatments they can’t access efficiently because of some of the decisions made.

What other stakeholders and complex, behind-the-scenes factors influence healthcare plan structure, medication formularies and patient costs?

For some other plans, there are many other players in the mix, such as pharmacy benefit managers and the insurers themselves, who sometimes have a more direct effect on what the plan structure looks like. And so, again, this is where complex, behind-the-scenes factors come into play, where different determinations are made about what medication is or isn’t on a formulary, or what tier a medication is on a formulary. This, in turn, affects the cost to patients and what is covered. So there’s a lot of complexity introduced by these other stakeholders that can influence what we’re seeing in this space.

The long and short of it is, it’s going to take everyone being held accountable and rolling up their sleeves with this kind of data, and saying, “Okay, we’re ready to commit to change here, because we know making patients our North Star and being patient-centric in the end is going to lead to better outcomes for everybody.”

Could you elaborate on the specific consequences for patients who experience administrative delays in their healthcare journey? Specifically, how do such delays impact a patient’s mental health, their ability to make informed decisions about their care and their overall trust in the healthcare system?

In the survey, people were very clear with us. We asked them, and they stated that as a direct result of problems with their health insurance, their stress worsened. They reported that their finances got worse, or they paid more than expected for their care. As a direct result, their trust in the healthcare system deteriorated, with one in ten even saying their relationship with their doctor worsened. These are the very professionals trying to support and guide them through the system.

I want to be clear that while our survey didn’t delve into the ‘why’ and ‘how’ behind these issues, we did gather some insights from qualitative quotes and from the clients we serve daily at CancerCare. The number one factor is the fear of the unknown. Patients are already scared, facing a cancer diagnosis that is inherently frightening. They are trying to access treatment to get rid of their cancer, live their lives to the fullest, and be there for their family and loved ones. Now, someone is creating doubt.

They already have fear and doubt about facing cancer, and now they worry about whether they will even be able to access the treatment their doctor says they need to recover. I believe that this added uncertainty, during a time that can already be very scary for people, is a tremendous driver of distress.

The other piece is that understanding the cost of our care is already a really complicated experience for many Americans. We’ve made progress on this, but for many people, it can still feel like a black hole, making it difficult to know what their care will cost. In our survey, a quarter of people said they still didn’t understand how to figure out the cost of seeing a doctor or getting their medication; there’s also uncertainty about that.

When you add the red tape, where they’re unsure if something will even be approved or if they can start the treatment they need, it creates further uncertainty. They don’t know what the out-of-pocket costs may be, and they don’t know how this red tape is affecting that. I believe this collectively really hurts people’s trust in the healthcare system.

Many people work hard at their jobs, expecting to get good health insurance because they are continually employed. Then they find, for example, that their plans are not covering the care in the way they expected. Or, they may have paid into the system, expecting in their retirement to have the coverage they worked so hard for, only to find it’s not providing the coverage they need.

Some of these individuals have disabilities and cannot work, and now they find they are unable to get that coverage. This issue of trust, where people invest in these systems — paying premiums and spending money every month for insurance coverage — and then find out that the coverage isn’t there in the way they expected, is a huge source of mistrust for many.

Reference:

“The Health Insurance Maze: How Cancer Patients Get Lost in the Red Tape of Utilization Management” by CancerCare. 2025 Red Tape Report by CancerCare.

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