The costs of cancer have always been a concern, but new studies show that this concern will affect more than just your bank account. A recent study showed that patients with cancer who declared bankruptcy were much more likely to die than other patients with cancer. There is a growing concern about the very real impact of financial stress on patients’ health.
Seeing the effect of financial stress on his patients with cancer, Yousuf Zafar, MD, MHS, of Duke Cancer Institute in Durham, NC, coined the term “financial toxicity,” which refers to the financial harm that patients with cancer often experience because of their cancer treatments. This harm is linked to patients’ “out-of-pocket” expenses, copays, coinsurance, reduced income from missed work, transportation expenses to appointments, and other care expenses.
“You can make an argument that half of all patients with cancer are underinsured,” Dr. Zafar told Conquer. “Beyond that, there have been multiple studies showing that at least one-third of patients with cancer, if not more, experience financial distress.” This financial distress can lead to cost-cutting behaviors such as missed appointments and skipping medications, ultimately negatively affecting their outcome.
According to the American Society of Clinical Oncology, the average monthly cost of a cancer treatment has more than doubled over the past decade. As treatment costs continue to rise, Dr. Zafar sees out-of-pocket expenses as the quickest growing cause of “financial toxicity,” but a cause that can be minimized, if not avoided altogether.
“When you’ve just been hit with a catastrophic diagnosis, money is often the furthest from the mind of patients, but it is important,” Dr. Zafar said. “It can add up over time and impact the quality of treatment, when patients end up not taking the treatment as prescribed because they can’t afford it.”
However, if you take steps early to understand the financial implications of your cancer diagnosis and the treatment required, you can put yourself and your physician in a better position to manage your disease, physically and financially.
The cost of your cancer care is very personal. Your insurance coverage is specific to you, and the treatment you need is specific to your cancer diagnosis, your medical history, and your preferences. So unless you initiate communication with your insurance company and your physician, financial toxicity likely will become a concern.
“We found that about 50% of patients we surveyed are interested in talking about the cost of their care. But only 19% actually have that cost discussion,” Dr. Zafar said.
He suggests that the first step to avoiding financial toxicity is to try to understand the financial side of cancer care. “It’s about understanding the parts of insurance coverage that you have and don’t have, along with the different aspects of care that are going to be involved in your treatment,” Dr. Zafar said. “It’s about understanding how treatment and insurance coverage will interact.”
Understanding Your Insurance
Reaching out to your insurance company soon after diagnosis is important to understand your coverage and financial responsibilities. According to Dr. Zafar, understanding your level of prescription drug coverage is extremely helpful early in the treatment process, before you end up with many expensive prescriptions.
If you need guidance on how to approach your insurance company, knowing which questions to ask, or understanding the information they provide, look no further than your own cancer practice.
“The majority of practices, particularly community practices, have financial counselors as a part of the practice,” Dr. Zafar said. “Those people are well-attuned to how to look
at insurance, how to look at coverage, to determine what’s covered and what’s not. I highly recommend talking to them early in the process.”
Once you know how your insurance plan will work in conjunction with cancer treatment, you can work with your physician to find the best treatment option.
When to Discuss Costs with Your Doctor
The financial aspects of treatment should be discussed as often as treatment side effects and the expected results. However, you may worry that expressing financial concern to your doctor may result in lower quality treatment.
Dr. Zafar reassures patients that the reason to talk to doctors about cost is to help make the prescribed care more affordable. When finances are a concern, the first step is never to change the treatment or prescribe a lesser treatment.
Dr. Zafar conducted a study showing that among patients who talked to their doctors about costs and had their costs lowered as a result of that conversation, 75% had their costs lowered without changing treatment.
“Many times, the healthcare team doesn’t realize that the patient is experiencing financial burden, because the patient is suffering in silence,” Dr. Zafar said. “But once we know, we can advocate on behalf of the patient with the insurance company or direct patients to financial assistance programs.”
If you can have a financial discussion with your physician before treatment is underway, even better.
“I don’t think any physician would say that it’s inappropriate, at any time, if a patient is bringing up a concern about their treatment or their health or their financial well-being,” Dr. Zafar said. “However, there are times earlier in the process when having this conversation would be more effective. It is much harder to dig out of medical debt than to prevent it in the first place.”
Questions to Ask Your Doctor
Simply asking your doctor how much your cancer treatment is going to cost will not be beneficial. Because your doctor doesn’t know the cost of your treatment in relation to your insurance, your goal should be to understand what types of treatment you may require. Dr. Zafar suggests asking your doctor:
- Will I be receiving oral chemotherapy? If not, what therapy will be used?
- Do I need to make sure I have prescription drug coverage?
- Will clinical trials be important for me?
- Will I require surgery?
- What additional treatment will I require, so that I can confirm coverage with my insurance company?
Any treatment mentioned by your physician that was not covered in your initial call to your insurance should be brought up to your insurance company now, before the treatment is underway.
Dr. Zafar suggests that you find out “What are the buckets of care, in terms of oral therapy, or IV therapy, or radiation, or surgery or a trial, that you will require, and how does your insurance cover those different buckets?”
Once you have those answers, speak frankly with your doctor about any financial concerns.
“Physicians are in this to help patients, and if we know that our treatment is causing harm to our patient, whether physical or financial, we want to do something about it,” Dr. Zafar said. “We may not always know the answer to the questions ourselves, but we will know who does know the answer.”