For the first time, a consortium of top U.S. cancer hospitals will provide patients with guidance about the cost of drugs used in their treatment, helping address a concern for many people undergoing a major medical event – what the financial repercussions of their condition are.
The information will supplement summaries that the group, the National Comprehensive Cancer Network (NCCN), has provided for 20 years on the effectiveness, side effects, and evidence backing the therapies.
The guidelines are being issued during a national conversation about the cost of drugs that has become a focus of Democratic presidential candidates and weighed on biotechnology stocks. In June, the American Society of Clinical Oncology issued an initial version of its own “value framework” to help doctors and patients assess the benefits, side effects, and cost of cancer drugs.
The NCCN’s affordability guidelines will be available to all, not just hospitals in the cancer network. They are also general – they do not provide an actual dollar figure, and do not account for how much of the cost insurance will cover. Instead, drugs are ranked on a scale of one to five for affordability, in the same way the group ranks other aspects of a therapy, such as how toxic it is or how effective it was in clinical trials.
“There is a tide turning when it comes to costs,” said Robert Carlson, chief executive officer of the NCCN, a Fort Washington-based nonprofit group that includes top hospitals like the Mayo Clinic, Dana-Farber Cancer Institute, and 24 others. “Our goal is to get the conversation started between the patient and the health-care team so they understand the tradeoffs,” he said. “If as an artifact of that we were to make health care more affordable, that would be wonderful.”
Health insurers and many doctors already rely on the NCCN’s separate, formal guidelines that establish the standard of care. Those recommendations don’t consider cost. The new guidance will be an additional set of information doctors can share with their patients while discussing treatment options.
Access to coverage
“There is this lack of linkage between cost and effectiveness and toxicity,” Carlson said. “That just doesn’t make sense to many people – in fact most people – within the health-care delivery system.”
“It’s important for patients to have access to coverage and be able to work with their doctors to choose their care,” said Holly Campbell, a spokeswoman for the Pharmaceutical Research and Manufacturers of America, an industry trade group. “PhRMA supports the development and use of sound, patient-centered tools to help guide decisions about which treatment options are best for the individual patient.”
While the guidelines aren’t very likely to provoke immediate change in what pharmaceutical companies charge, they are designed to make patients more aware of the cost of drugs before treatment.
That could influence the ongoing conversation about prices. The American health-care system disconnects the treatment choices made by doctors and patients from the insurers who pay for them, limiting pressure on drugmakers to keep prices down, said Niam Yaraghi, a fellow at the Center for Technology Innovation at the Brookings Institution. Many of those costs then get passed along to patients in the form of cost-sharing and co-payments.
“Regardless of the effectiveness of the innovation, regardless of how much longer I would live if I took this expensive cancer drug, as long as it’s approved they have no choice but to pay for it,” Yaraghi said. “We have created a luxury market for a necessary commodity.”
Consumers are becoming more conscious of treatment costs, however, as insurers pass on a higher proportion of the bill. Since 2010, deductibles for employer-sponsored plans are up 67 percent, while insurance premiums are up 24 percent, according to a September report by the Kaiser Family Foundation and the Health Research and Educational Trust. Worker earnings, by contrast, rose 10 percent over that period, according to Kaiser’s analysis of Bureau of Labor Statistics data.
With increasing concerns about the cost of care, “we wanted to add some metric to our guidelines that talked about affordability,” NCCN’s Carlson said. “We wanted a system that would facilitate conversations between patients and their physicians on issues the patient felt were important.”
Carlson said he conceived of the idea 18 months ago, before the latest uproar over drug costs that started when a small drug company, Turing Pharmaceuticals AG, raised the price of Daraprim from $13.50 a pill to $750 overnight, causing widespread outrage. Turing has said it plans to reduce the price of the drug, which has been on the market for years as an anti-malarial and to treat toxoplasmosis.
While drugmakers invest billions of dollars to develop new cancer medicines, a new drug’s price can sometimes increase the cost of treatment disproportionately compared with the length of time it extends life. Organizations such as the American Society for Clinical Oncology and doctors at Memorial Sloan-Kettering Cancer Center in New York have been advocating for restraint and prices tied to patient benefit.
The new cost ratings are going into what the NCCN calls “Evidence Blocks,” easy-to-understand graphics meant to help patients and doctors discuss a treatment. The affordability rating includes not just the price of the drug, but also supportive care such as anti-nausea medicine, monitoring expenses, treatment of toxicity or side effects, and fees for the hospital or another location where the drug is given. The first five-point ratings will be issued this week for chronic myelogenous leukemia and multiple myeloma, two different types of blood cancer.
Affordability ratings for breast, colon, lung, and rectal cancers are expected by the end of this year, and other cancers will be added next year.