While working on this story from Smithsonian's May issue about oncologist Brian Druker and his discovery 10 years ago of a breakthrough drug for chronic myeloid leukemia, I was struck by the following passage:
Over the pub’s blaring music Mayfield said of his BCR-ABL gene, “I had the G250E mutation—have the G250E mutation—which is why I became resistant to Gleevec.”
His remark sounded like something out of a time machine programmed to years or decades from now, when people will nonchalantly talk about their deadly genetic mutations and the drugs that stymie them. It’s an image Druker often conjures. “In the not-too-distant future,” he wrote when accepting the Lasker-DeBakey Award, “clinicians will be able to thoroughly analyze individuals’ tumors for molecular defects and match each person with specific, effective therapies that will yield a durable response with minimal toxicity.”
Genes, genetic mutations, targeted drugs, toxicity, molecular defects, enzymes, stem cells, chromosomes, tyrosine kinases (and these are just examples for this one rare cancer)---modern medicine is getting more and more complex as we learn more about what makes us ill. That's only going to get more complicated as time goes on, and doctors don't always have the time for long explanations.
I don't expect that high school science will keep someone prepared for when they are diagnosed with some disease 40 years later---grandchildren will still be explaining medical topics after their grandparents' doctor visits for decades to come---but a good grounding in science brings a certain comfort level that lets a person quickly educate themselves when new topics arise.
But when people cannot understand their own medical issues, this illiteracy is just one more barrier to getting the care they need. Studies have found that these individuals are more likely to poorer health, less likely to use preventative care, as well as more likely to be hospitalized and have poor outcomes. One study even found higher rates of mortality among elderly people with low medical literacy.
The National Patient Safety Foundation estimated in 2007 that low health literacy costs the United States $106 billion to $236 billion every year. (And technology may not be as great a help as we would like.) With health care costs increasing every year, tackling this problem seems like a no-brainer.