Dr. Yousuf Zafar

A few years ago while seeing cancer patients in clinic, Dr. Yousuf Zafar (right) noticed that patients were asking for less expensive medications and for less frequent doctor visits.  Even patients with health insurance were expressing distress at their growing health care bills. How much does cancer treatment cost? That’s a hard question to answer. These patient comments triggered an entire line of research for Dr. Zafar, a medical oncologist at Duke Cancer Institute in Durham, N.C. His current research focus is in how the cost of care impacts the lives and treatment of patients with cancer. We asked him to answer some questions for a brief e-mail interview.

1. Tell us about your research.

I’m interested in how patients cope with the cost of their treatment. Cancer is among the most expensive diseases to treat in the U.S., and insurers are passing some of the growing cost burden to patients. We’ve learned that patients who think they

have “gold-plated” insurance can still face considerable out-of-pocket costs from their cancer treatment. Some patients are at risk of spending retirement savings, taking on loans, spending property, and cutting back on basics like food and clothing. On top of that, patients infrequently talk to their doctors about health care bills. As a result, the bills can pile up fast. We have called this the “financial toxicity” of cancer care.

2. There is so little price transparency in healthcare. How can patients reduce their costs without knowing how much treatment will cost in the first place?

This is especially a problem in cancer care, where it is so hard to define an “episode” of cancer treatment. For knee replacement surgery, it’s easy to demarcate the start and end of treatment – not so for cancer, where treatment is often ongoing and multidisciplinary with no clearly defined end. Until we get more transparency, what’s most important for patients is to keep close track of the bills as they come in, and to communicate those costs with their treatment team in case there are ways to lessen the burden.

3. So you’ve identified a problem with cancer treatment and financial toxicity, but what can we do about it?

That’s the next focus of my research. We are developing an intervention to help patients better handle their financial burden. We have partnered with Medlio,a company that is developing a smartphone-based virtual health insurance card that can provide patients with estimates on their out-of-pocket costs. We have also partnered with an international non-profit organization, Cancer Support Community. CSC has developed a tremendous resource for patients who are having difficulties paying for cancer care. We want to integrate their resource into the clinical setting as patients are making treatment decisions. We have a long way to go, but I think intervening on financial toxicity is the next important step.

4. Your biggest challenges?

Cost is clearly important for patients, but cancer patients have few treatment alternatives – in many cases, they are stuck with expensive treatment. When it comes to “the best treatment,” few patients are willing to sacrifice the best outcome for smaller bills. We have much more work to do in incorporating cost as a factor in decision-making. Much of the treatment we provide has marginal benefit but high cost; that’s where we need to focus when it comes to cost and decision-making.

5. How can patients apply today what you have learned from your research?

First, I think awareness about costs on the horizon can go a long way. Our research has shown that patients don’t expect high out-of-pocket costs because they assume their insurance will pick up everything. For those who have been struck by a catastrophic illness like cancer, expecting some costs as treatment begins is key. Second, I would urge patients not to be embarrassed to talk money with their doctor. Clinicians are becoming more aware of the rising cost burden for patients. They might not have an immediate answer, but they might direct patients to appropriate resources. Third, patients should be encouraged to seek out resources on their own. Organizations including the American Cancer Society and the American Society of Clinical Oncology have material available to point patients in the right direction.

6. Anything else we should know?

As far as cancer care, we need to explore the parallels between the physical toxicity of care and the financial toxicity of care. We might not have all the answers to the side effects caused by treatment, but early communication is critical to addressing both problems.

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Dr. Zafar can be reached via Twitter @yzafar. He has published and spoken internationally on the cost of cancer care. In addition to his work in cost research, Dr. Zafar treats patients with gastrointestinal cancers at Duke Cancer Institute.

Jeanne Pinder

Jeanne Pinder  is the founder and CEO of ClearHealthCosts. She worked at The New York Times for almost 25 years as a reporter, editor and human resources executive, then volunteered for a buyout and founded...