When oncologist Yousuf Zafar at the Duke Cancer Institute prescribed an expensive pill for a young man with colon cancer two years ago, he assumed his patient could afford it because he had a job and private insurance.
Eight months later, Zafar was about to prescribe the drug a second time to the man, whose cancer had relapsed. This time, though, he was shocked when the patient told him his co-pay was $325 per week — and he couldn’t afford it much longer.
With “one simple question, I could have saved him thousands of dollars, and distress,” said Zafar, who switched the man to an equally effective injected drug with no co-pay.
With new cancer drugs priced as high as $10,000 a month and more, and insurers tightening payment rules, patients who thought they were well covered increasingly find themselves having to make life-altering decisions about what they can afford. As a result, cancer doctors trained to weigh side effects and efficacy are being regularly pulled into delicate discussions on cost, an issue the American Society of Clinical Oncology meeting in Chicago will explore starting Friday. The group is working on an algorithm to rate the cost-effectiveness of oncology drugs to help doctors with those conversations.
“The amount of support we need to provide to patients in navigating the financial aspects of their care has increased substantially in the past few years,” said Neal Meropol, an oncologist at the University Hospitals Seidman Cancer Center in Cleveland, who is chairman of a panel on value in cancer care at the meeting.
In a first for the cancer meeting, researchers that review clinical results for certain studies have been told to examine the value of the treatments as well. Additionally, education sessions focusing on value will look at the cost issue from the perspective of patients, insurers, the drug industry and other countries with more cost constraints.
Global spending on cancer drugs alone rose 28 percent to $91 billion in 2013 from $71 billion in 2008, according to a report by the IMS Institute for Healthcare Informatics. At the same time, insurers are increasingly crafting their coverage plans to require that patients pay a percentage of an expensive drug’s cost instead of a fixed amount as a way to keep premiums down.
The costs can be a particular issue for cancer patients who suddenly have to take numerous drugs at once, while at the same time dealing with other expenses, such as for travel and hotels to get treated at hospitals far from their homes. Compounding the problem, a cancer diagnosis often results in decline in income because people can no longer work full hours.
A 2013 analysis in Health Affairs found that cancer patients were 2.65 times more likely to go bankrupt than people without cancer. Another survey of 284 patients in Washington state found that 38 percent of colon cancer patients reported financial hardships as a result of treatment. The problems cited included having to refinance their home to pay for treatment or an income decline of more than 20 percent, according to the results in the Journal of Clinical Oncology.
These days Duke’s Zafar makes a point to warn patients when he prescribes a drug that might have high co-pays. For some pills, he checks with the pharmacy in advance to find out what the patient’s co-pay will be, so financial assistance can be arranged or alternative treatments can be found.
Cancer patients, focused on saving their lives, are reluctant to bring up the cost issue with their doctors, fearing they might be switched to a second-tier treatment, said Chris Tribble, Zafar’s colon cancer patient.
In addition to the treatment costs, Tribble, who lives in Statesville, North Carolina, — 120 miles from Duke’s Durham location — had to pay for 90 nights in motels over the last two years while he was treated. He also had to pay $1,000 to meet separate insurance deductibles for a home health nurse to treat a post-surgical infection.
“When you’re diagnosed with cancer and getting treated, you’re assuming that whatever the doctor is telling you, that’s going to be the very best drug,” Tribble said by telephone. “You don’t feel there is an alternative.”
So if the doctor doesn’t raise the subject, “the patient may not ever bring it up,” he said.
Tribble, 40, is now cancer free. If Zafar hadn’t given him an opening to discuss his co-pays, he would have borrowed money to pay for the pill, without ever knowing there was a similar injected drug that would cost him nothing, he said.
Meropol, at the Seidman Cancer Center, says he first started hearing patients “wince” about costs 10 years ago after drugs such as Avastin from Roche Holding AG, based in Basel, Switzerland, and Erbitux from Bristol-Myers Squibb Co. and Indianapolis-based Eli Lilly and Co. hit the market. Erbitux generated more than $1.1 billion in sales in 2013.
Now, Avastin has been joined by many more-expensive drugs, and roughly one-third of his patients have some difficulties with the costs of their treatment, he said.
Often, the problem can be solved by enrolling patients in co-pay assistance or free drug programs, or by switching them to a less expensive drug when that is available, as is the case for some expensive narcotics used to treat cancer pain or anti- nausea drugs used for chemotherapy side-effects.
One of his patients, though, stopped treatment in part due to cost and the cancer progressed, he said.
At the Fred Hutchinson Cancer Research Center in Seattle, doctors in the gastrointestinal oncology department routinely ask the pharmacy to look into what a patient’s co-pay will be before they prescribe certain expensive pills, said Veena Shankaran, an oncologist there. The idea, she said, is to find out whether cost will be an issue before the patient ends up at the pharmacy with a big bill.
Several times, she has switched therapies for advanced cancer patients because of cost issues, while another time a patient obtained money from family members to pay for a treatment that was going to cost her $2,000 in the first month.
For costly painkillers and other drugs to treat side effects, there often are less expensive substitutes. For chemotherapy drugs for which there are no substitutes, patients often qualify for co-pay assistance from various foundations or companies.
While the idea that patients need to have “skin in the game” to prevent overuse of brand-name drugs may make sense for ordinary ailments, said Shankaran, “for a disease like cancer, it ends up being counterproductive because people have so many costs over so long, it ends up being a huge burden.”
High drug costs are already affecting patient care, research suggests. Alan Venook, an oncologist at the University of California at San Francisco, said he treated four patients several years ago who relapsed after they stopped taking Gleevec for gastrointestinal stromal cancer because of financial difficulties. He published details on three of the cases in 2010 in the New England Journal of Medicine. One patient eventually died, Venook said in a telephone interview.
A 2013 study led by Duke’s Zafar of 164 patients applying for co-pay assistance found that nearly 45 percent reported skipping drugs or not appropriately filling cancer-related prescriptions due to cost.
Meanwhile, leukemia patients were 70 percent more likely to temporarily stop taking Gleevec and 42 percent more likely to skip doses of the chronic myeloid leukemia drug from Novartis AG, if there were had higher than normal co-pays, compared with patients who had lower co-payments, according to an analysis of insurance claims data by researchers at the University of North Carolina and Harvard Medical School published this year in the Journal of Clinical Oncology.