Having the Cancer Cost Conversation: 5 Places to Start

From the Editor's Desk
November 2, 2017
Lidia Schapira, MD, FASCO

People who are facing a crisis need to speak with someone who they know and trust. We all need information, support, and guidance to make good decisions, and this especially applies when you choose a treatment plan for cancer. In today’s world, how much each cancer treatment will cost is an important part of these discussions. Prices of cancer treatments have risen dramatically in recent years and some can cost thousands of dollars per month, increasing the burdens on people living with cancer and their families.

The recent National Cancer Opinion Survey, commissioned by the American Society of Clinical Oncology, shows that some people have to make difficult choices because of the cost of cancer treatment. The survey revealed that 27% of Americans who have cancer or have a family member with cancer have taken steps to lower their treatment costs, including skipping appointments (9%), refusing treatment (8%), not filling prescriptions (8%), skipping medication doses (8%), and cutting pills in half (7%). These actions can endanger the health of people with cancer.

The oncology community now calls this added source of distress “financial toxicity.”share on twitter This term captures how financial concerns affect a patient’s quality of life. People facing cancer worry their illness may drain the family’s savings, and this may trigger feelings of guilt and distress. Less is said about how these concerns impact the lives of family caregivers, although we can imagine the sacrifices that are made to ensure that a loved one has access to the best possible care and treatment. Costs of tests and medications may be staggering, and with each new promising treatment approved for cancer care, we see higher price tags. In addition to these obvious expenses, there are other items to consider, including lost income for both the patient and family caregivers, transportation, and childcare, to name a few.

Patients with cancer may feel uncomfortable asking about the cost of their care, and some oncologists may prefer to focus on the treatment plan rather than discuss the possible costs. Oncologists don’t always know how much a drug will cost, which can surprise and unsettle patients. It can be difficult to know what a patient’s insurance will cover or what hospital or clinic fees will add up to. At first, this may seem surprising, but it reflects the complex world of medical cost reimbursement. However, the doctor can help connect you with others to find the answers. Consider asking your doctor: “I’m worried about managing the costs of my cancer care. Who can help me?” Many oncology practices have individuals whose job it is to help patients with the financial aspects of their treatment.

I have written before about how I try to address the challenges of financial toxicity with my patients. Here are some tips that may help get these conversations started:

  1. Ask your cancer care team. It’s perfectly fine to speak up. Find someone on your team with whom you feel comfortable discussing finances. This could be your oncologist, oncology nurse, social worker, nurse navigator, or any of the other professionals who are dedicated to your well-being.

  2. Speak with your specialty pharmacist. If your treatment plan involves special medications, you may have to go to a specialty pharmacy. The specialty pharmacists there may be able to answer questions and help you solve problems. They are often very helpful and resourceful.

  3. Ask if there is a financial counselor where you receive treatment. If a financial counselor is available, he or she may be able to identify additional resources to help you cover costs or find cheaper and effective alternatives.

  4. Reach out to your employer’s human resources department or insurance company. A representative from your work’s human resources department or from your insurance company may be able to give you valuable information. This information can help you discuss the treatment plan with a clear idea of what it may cost.

  5. Contact patient advocacy organizations. Many patient advocacy organizations are devoted to people with specific kinds of cancer. Others address general issues in cancer. These organizations can also help you get the answers you’re looking for. 

A recent study in the Journal of Oncology Practice showed that when patients and doctors have the cost conversation, nearly one-third of those discussions included ways to lower costs for the patients. A little more than half of these discussions were started by the oncologists. If more oncologists and patients have these conversations, more and more patients and their loved ones can avoid the burdens of financial toxicity. As a result of these conversations, you may find more treatment options are available to you than were initially discussed.

The oncology community is working to come up with better ways of explaining treatment options, making sure they include costs as well as other measures that determine what is most important and valuable for individual patients. We have a better chance of making progress—and more patients receiving the high-quality care they need—if we work together in having open conversations about the cost of cancer care.