Overall, about a fourth of people have taken measures to decrease the cost of their or their loved one’s treatment — even if that means a negative impact on its effectiveness.
More than 90 percent of Americans think that the cost of cancer care is too high, and as a result, many patients may jeopardize the effectiveness of their treatment in an effort to cut expenses, according to a recent survey conducted by the American Society of Clinical Oncology (ASCO).
The nationally-representative survey included 4,016 adults in the United States. About a third (32 percent) of participants have an immediate family member who has or had cancer, and 4 percent of respondents have or had cancer themselves. Overall, about a fourth of people have taken measures to decrease the cost of their or their loved one’s treatment — even if that means a negative impact on its effectiveness.
This is not the first time that this problem has been observed. In fact, earlier in the year, the American Cancer Society published a study in the journal Cancer that found that compared to patients with other diseases, those with a history of cancer are more likely to stop treatment due to financial reasons.
“It’s a big problem. This is a problem we’ve been aware of, but we haven’t quite appreciated the magnitude or the actions that patients are beginning to take to help to control the cost of their cancer care, even if it means putting in jeopardy the favorable outcomes of their treatment,” said Richard Schilsky, M.D., ASCO’s Chief Medical Officer, in an interview with CURE. “That’s what’s striking to me.”
Steps taken to lower costs included skipping doctors’ appointments (9 percent of respondents), refusing treatment (8 percent), postponing filling or not filling prescriptions (8 percent) and cutting pills in half (7 percent).
This can prevent cancer from getting under control, Schilsky said. If it’s an advanced cancer, altering treatment may cause further spread of tumor growth, and if it’s a cancer that is already responding well to treatment, this may increase the chance of recurrence.
“That’s a pretty high price to pay,” Schilsky said.
The survey also found that the majority of Americans want the government to take steps toward lowering drug costs. Nearly all (92 percent) of participants said that they believe that Medicare should be able to directly negotiate with drug manufacturers to drive down prices, while 86 percent said that the federal government should regulate the price of cancer drugs.
When it comes to generic drugs, 89 percent of people reported that the Food and Drug Administration (FDA) should expedite the development and approvals of these agents, and 80 percent expressed that it should be legal for United States residents to buy cancer drugs from a different country altogether.
“What these comments in the poll are reflecting is that Americans want the government to do something about this. Among the developed economies in the world, the U.S. is the only country that does not have a mechanism to control the cost of health care,” Schilsky said.
Moving forward, Schilsky said that it will take a multi-faceted approach to solving this problem.
“This is one of those areas where we have the convergence of science, economics, policy, culture and so on. And we need to move the ball on all of those,” Schilsky said.
The science behind drug development must be optimized to not only produce the best drugs possible, but also to discover biomarkers that will identify which patients would respond (or not respond) well to certain drugs.
Policy must also be modernized to drive down the cost of cancer care, according to Schilsky. This includes allowing Medicare —who is the largest payer for cancer drugs — to directly negotiate with drug companies on prices. Currently, that is forbidden by law and would need an act of Congress to allow it. Also, Schilsky mentioned that regulatory bodies like the FDA should be given more authority on the way in which they evaluate a new drug that is coming on to market.
“A sponsor has to show that a new drug is safe. The sponsor doesn’t have to demonstrate that the drug is better than something that it already out there. That is a peculiarity of the U.S. health care system,” Schilsky said.
Finally, American society needs to define value when it comes to cancer care. They need to answer questions such as “What outcomes will make the price of this drug worth it?”
Patients and their families should also be aware that there are a number of resources that may be able to lessen the burden of cancer treatment.
Schilsky said that with certain changes, the cost — and therefore outcomes — of cancer care can be improved. But for now, we need to start to change the way the system is operating.
“We’ll see what we can accomplish in the next decade or so.”