COST: Even with insurance, seriously ill patients face high costs for expensive drugs

You may have seen this story in The New York Times today: even people with health insurance end up paying hundreds or thousands of dollars each month for life-saving medicines if they have the misfortune to need a really expensive drug.

Many health plans already "tier" their drugs, making patients pay more if they opt for brand names instead of generics, or if they use a drug that's not on a "formulary" or list of preferred drugs. Now they are asked to pay up to a third of the cost of these new, very expensive drugs for diseases like multiple sclerosis, hepatitis C, hemophilia, rheumatoid arthritis, and some cancers. New treatments can cost $100,000 or more a year. "The system means that the burden of expensive health care can now affect insured people, too," Times reporter Gina Kolata writes, adding that the patient's share of these drug bills can be more than they pay for housing in a month, or even more than their entire monthly income. And for chronic diseases, the drug bill isn't a one-time occurrence. Patients have to take them month after month, year after year.

"It is very unfortunate social policy," Dr. James Robinson, a health economist at the University of California, Berkeley told the Times. "The more the sick person pays, the less the healthy person pays."

Some oncologists have told us that within a few years we may have genetic information about specific patients' cancers, which could in turn help predict which of these new expensive new drugs will or will not work well for an individual patient. If we have knowledge, not guesswork, it would help decide when to go ahead and prescribe a $100,000 drug and when it would offer no hope.

One vital component of any solution is a health care system that covers everyone—we can spread the risk better if the healthy as well as the sick are covered.  We also need more comparative effectiveness research to find out if these drugs really work better than older, cheaper alternatives and for which patients.

Other bloggers are weighing in. Gooznews writes about what we do and don't know about the benefits of MS drug Copaxone, and the role of taxpayer dollars in gleaning that knowledge. Ezra Klein suggests that having a patient pay more for the unproven or experimental drug might be sensible policy, but dumping the cost on insured people who have the misfortune to have an expensive disease rather than a cheap one is not.