Even with gold-plated medical insurance, cancer is expensive. With less comprehensive insurance, it can be devastating. We like to think this is less of a problem in Massachusetts, where we thankfully have close to universal health care coverage, but it is surely still a problem. Many people have insurance, but also have large co-pays and deductibles. Oral cancer drugs are not always covered by insurance, and lots of creative thinking goes into how to deliver treatments and medications in the optimal and safe and "covered" (by insurance) way. An example would be Neulasta injections that cost upwards of 5K each; some insurances require that individuals receive those injections, given approximately 24 hours after a chemo infusion, at the Hospital--which adds the costs of a nurse and the hospital overhead as well as the patient's inconvenience, gas, and parking.
A new study from Duke, that will be presented at ASCO in a few days, suggests that most patients worry about money, wish that they would talk about it with their doctors, and are afraid to do so. People understandably fear that raising concerns about the costs of treatment may compromise their care and their doctor's recommendations of therapy. Here is a good essay by Heather Millar from Web MD about this issue. Since it is short and important, I am giving you the whole thing. It will be followed by its' link as well as a link to more information re the Duke study.
WebMD Expert Blogs
Talking to Your Doctor About Financial Concerns
By Heather Millar
As Iʼve mentioned many times, I am very, very lucky to have what the press have called a “gold-plated” insurance plan through my husbandʼs employer. Even with that privilege, cancer was a financial black hole for my family. Though our co-pays and outof- pocket medical expenses were kept to a minimum, weʼre still paying off the credit card debts we ran up because, for 18 months, I was too sick, too addle-brained or too tired to work.
And I know so, so many people whoʼve had it much worse than my family did: A woman with metastatic breast cancer who was reduced to charity fund-raising and living on friendsʼ couches in the last months of her life; a woman with colon cancer who shared my radiation time slot and who lost her job while in treatment, a family who had to sell their house because the Dad had pancreatic cancer.
As a society, when we talk about cancer costs, we are usually talking about the costs of drugs, chemo, radiation, scans and the like. Weʼre talking about hospitals and employers and insurance companies. We too seldom talk about the collateral financial damage to patients, the family upheavals, the embarrassment, or the debt burden that may go on for years afterward.
Yet patients are reluctant to bring up any of these worries with their doctors because theyʼre afraid it will compromise their care, according to a new report from Duke University. Researchers there surveyed 300 patients who had insurance. Even with that medical coverage, some 57 percent of the patients surveyed said that they wanted to discuss treatment costs with their doctors. But only 19 percent actually had that conversation. Why? Because they were afraid that talking about cost would compromise their care.
If you want to know a major source of our healthcare systemʼs dysfunction, really, you need look no further than the results of this survey: Busy doctors trained to “do everything” regardless of cost. Too little talk about “goals of care,” that is, exactly what are the goals of treatment? Because, alas, not every patient can be cured. Patients reluctant to bring up the subject of cost because theyʼre terrified, embarrassed and overwhelmed. Patients who donʼt think their doctors should consider recovery times, time off work for appointments, travel time, transportation costs, hotel costs and lost income when outlining a treatment plan.
The Duke researchers, who will present their results at the American Society of Clinical Oncology meeting in June, further questioned the patients who had the greatest financial distress, as measured by a tool used by financial planners. Of these struggling patients, 61 percent wanted to talk about cost. Only 25 percent did so.
Hereʼs the headline for patients: Those who did talk to their doctors felt that they were able to hold the line on costs but did not feel that their care was compromised.
“Thereʼs a real disconnect,” says Yousuf Zafar, M.D., MHS, assistant professor at Duke and lead author of the study. “[Our study] suggests that the perceived barriers to the cost conversation arenʼt real, and we need to do more to foster a dialogue around these issues.”
Yes, yes, yes! Doctors and hospitals keep saying that patient values and preferences should be part of the medical decisionmaking process. For many of us, money is a HUGE issue when weʼre ill. Letʼs not be afraid to be honest about that.
Read more from Duke: