Financial Navigators to Address Cancer Cost Concerns

Jennifer SingleterryThe passage of the Patient Protection and Affordable Care Act of 2010 (ACA)1 changed the landscape of insurance coverage in the United States. Prior to the ACA’s passage, patients with chronic diseases and preexisting conditions faced the possibility of lifetime insurance caps and lack of coverage due to matters outside their control. The ACA ended these practices, making insurance available to all at fair-market rates.

Still, the availability of insurance has not yet led to universal coverage, and even some patients with insurance face insurmountable costs. Approximately 10% of nonelderly Americans lacked insurance in 2016, according to a CNN report published earlier this year.2 And those with insurance often worry about meeting their premium payments and affording the care they need to receive. A study published in PLoS found that 51% of advanced cancer patients reported financial distress, and that financial anxiety caused worsened social, physical, and emotional wellbeing.3

Financial navigators have emerged as a conduit for cancer patients struggling to determine how to pay for their care. Navigating the Coverage Experience and Financial Experience for Cancer Patients, a new study from American Cancer Society Cancer Action Network (ACS CAN) and Georgetown University Center on Health Insurance Reform, interviewed financial navigators at 11 hospitals across nine states about their experiences working with patients with cancer.4 The navigators discussed issues they frequently see in this patient population, including unclear treatment costs, coinsurance, high out-of-pocket insurance plans, and medical management programs.

Journal of Clinical Pathways spoke with Jennifer Singleterry, MA, senior policy analyst at ACS CAN (Washington, DC), about the report’s findings, the role of financial navigators in the oncology landscape, and strategies for greater global insurance literacy across the spectrum.

What are some of the coverage gaps that have persisted for insured patients, even after the implementation of the ACA?

Our report shows a good news/bad news situation. The good news is that more and more people have been able to get
insurance coverage. The financial navigators we interviewed said they used to have a lot of problems getting coverage for cancer patients, particularly as they were coming off of an employer plan because they were no longer working. The good news is they are having less trouble getting people coverage when they need it.

However, there’s an exception to that, which occurs in the states that have not expanded Medicaid. Navigators in those states did report that for low-income folks, there are still problems getting into an insurance plan they can actually afford. That is the major coverage gap that the report highlights. And the bad news is that although a lot more patients are getting coverage, many are struggling to afford that coverage. For patients who already have insurance, the main issue today is really affordability, as opposed to denial of coverage or a plan saying they won’t cover a specific benefit.

What is medical management?

Medical management techniques include any way an insurance company tries to manage their costs and their benefits that is beyond coverage. So, for example: an insurance company is going to cover treatment X, but they are going to put up hoops you have to jump through to actually access that coverage. Two of the most typical things cancer patients run into are step therapy and prior authorization. Prior authorization is when an insurance plan basically has to give approval for a particular treatment, and then step therapy requires a patient to try one treatment before they can try another one. So, a plan may require a patient to try a cheaper treatment before moving on to a more expensive treatment. That is not always the right decision for a patient, and doctors get frustrated—they are the experts, after all, and the companies are telling them that their patients have to potentially fail another treatment before they can get the recommended treatment. That can affect quality of life, and it also increases cost. Patients are paying for the treatment the whole time.

What exactly is the role of a financial navigator?

There are several types of navigators. The people we interviewed for this report are financial navigators embedded in hospital systems, to help patients understand the health care landscape. They are helping cancer patients in the treatment stage, and the navigator helps any patient who is identified as likely to need help paying for their treatment or navigating their insurance. They help the patient with pretty much the whole experience, outside of the medical treatment part. They make sure the patient has insurance coverage, that premium payments are being made, and that they can transition from employer insurance to private insurance if need be. Once they are insured, they help to figure out how much a surgery is going to cost. Are you going to be able to afford copays? Do we need to set up a payment plan? Are there approvals needed from the insurance company to do this? They deal with all of these issues with the idea that a cancer patient—especially one who has never had a catastrophic illness before—might not be equipped to handle everything required by themselves. The hospital system employs these people, too, to ensure that they get paid.

What are some of the elements of insurance that patients are most likely to not understand?

One of the things patients often do not understand is simply how much they are going to end up paying. Of course, this varies completely, but it is almost always more than they expect. That is often because patients might not understand the mechanics of their insurance benefit—they might have a high deductible, and they probably don’t understand maximum out-of-pocket limits. If you’ve spent your whole life just going to your annual physical and maybe some preventive visits and then you get a catastrophic illness, that can be very unexpected and difficult for patients to deal with. They can end up paying their entire deductible in a month. 

What can be done to boost global insurance literacy?

Some solutions include helping patients understand their benefits and enroll in a plan they can actually afford to use. Patients also face problems with transparency, and have problems figuring out what a treatment is going to cost. Financial navigators reported to us that sometimes they struggle to figure out what a hospital is going to charge a patient, and that is essentially what their job is supposed to be. That can be a big problem, because it doesn’t allow the patient to anticipate what they will be paying. We need more transparency in pricing, and open and constant communication with the patient. 

A lot of insurance designs are now using coinsurance, which is a percentage of the cost a patient now pays up front. But you don’t always know what you are multiplying that percentage with. So you could be paying 30% of X, but you don’t know what X is. The insurance benefits that are easier to understand are the ones that use copays, because those are flat fees. So even if you have a $500 copay, you still know exactly what you are paying. There is transparency.


1. Patient Protection and Affordable Care Act of 2010. website. Published March 23, 2010. Accessed August 25, 2017.

2. Lubhy T. The truth about the uninsured rate in America. CNN website. Published
March 14, 2017. Accessed August 25, 2017.

3. Barbaret C, Brosse C, Rhondali W, et al. Financial distress in patients with advanced cancer [published online May 18, 2017]. PLoS One. doi:10.1371/journal.pone.0176470

4. Volk JA, Ahn S. Navigating the coverage experience and financial challenges for cancer patients. American Cancer Society Cancer Action Network website. Published July 24, 2017. Accessed August 25, 2017.