<!--[endif]--> We recently blogged about a report by the American Cancer Society and the Kaiser Family Foundation on the costs of cancer. More specifically, we wrote about how vulnerable even people with health insurance can be when they get a serious and costly disease like cancer.
Merrill Goozner, a blogger and author whose work we like reading, commented that we should have written more about the reasons cancer costs are so high, especially the pricey new drugs. At the Kaiser event itself, he had also raised a very intriguing point about how to glean knowledge from ongoing cancer treatment, which can be a sort of a trial and error affair for individual patients. The goal is to harness that clinical experience so we can do a better job treating other patients with a similar disease and trajectory, or as he put it, how we can "turn cancer care into a learning system." We'll come back to that in a moment.
We blog about the connections between cost, coverage and quality frequently. But we also have focused on the limitations of health insurance, and the growing problem of "underinsurance." That's worth remembering as we enter a national debate about how to expand coverage. Coverage needs to be meaningful. Insurance doesn't really "insure" if sickness means bankruptcy. As Karen Pollitz, a Georgetown University health policy researcher and a cancer survivor herself, pointed out at the Kaiser-Cancer Society discussion, "the average amount of medical debt that sinks a family is less than $12,000." In other words, it isn't necessarily because of the newest and coolest (and costliest) drugs. She said a $25 co-pay for radiation five days a week for seven weeks ($875) can be the tipping point—or drowning point—for an underinsured lower-income working family that is paying out-of-pocket health costs and may also be losing wages because of illness and family care-giving responsibilities. As Pollitz said,
You have a lot of other problems when you're seriously ill. You're depressed. You need more help at home. You maybe need help with transportation. There are many, many, many stresses on a family and that $12,000 bit of extra medical debt, $1,000 a month, can you right over the edge and that's what does it for families.
(Only slighty off topic—Washington Post recently published this article on resources for families coping with cancer costs.)
That being said, we were quite interested in what Merrill said about registries of treatment data. We aren't experts on oncology, but we do know that, particularly with advanced cancers, doctors often try several combinations of drugs before they hit on something that may defeat or at least slow down the cancer in an individual patient. Obviously giving doctors more knowledge about the right mix of drugs for a specific type of tumor would give patients better odds, minimize exposure to toxic drugs and save money. We had just begun looking for something to read to learn more about this when Gooznews posted a piece, based in part on a recent Institute of Medicine forum on "assessing and improving value in cancer care." He urged the FDA to:
[A]ctively support the creation of registries where physicians in community practice would have to report the on- and off-label use of anti-cancer drugs and the patient results. These databases could then be used by researchers to evaluate the actual clinical effectiveness and side effects of drugs that in their initial approval or published off-label trials were either marginally effective or signaled safety problems.
Some believe that advances in early detection (see this recent Wired cover story on the research) or personalized medicine that will tell us a lot more about the characteristics of a specific tumor will at some point make a lot of this moot. We can already do some testing to tell us which breast and colon tumors will not respond to certain of the new drugs. But we don't really know when the great leap forward, in detection or tumor typing, will come. Maybe more quickly than we dare hope. Maybe more slowly than some would have us believe. So in the meantime, we need to make sure that cancer patients have insurance that will truly insure them, while we also make sure that scientists have the tools they need to discover how to best treat them.