October is Health Literacy Month! While the Tech Lister blog generally focuses on cool improvements in the way things and people work in the 21st century, I’m going to highlight an area that doesn’t work so well for anyone – our healthcare system. A recent column in the New York Times illustrates the strange and frustrating obstacles to simply refilling a needed prescription for a chronic illness experienced by the author. That this author, Aaron Carroll, happens to be a physician well-versed in the idiosyncrasies of American healthcare emphasizes the opacity of the system for everyday folks.
To recap the author’s experience: Dr. Carroll lives with ulcerative colitis, a chronic bowel condition that before his recent drug therapy necessitated such life-limiting exigencies as planning his days around bathroom trips. Finally his doctor recommended an off-label use of an older immunosuppressant drug, which is available in generic form. Happily the drug not only relieved Carroll’s symptoms, it was also relatively inexpensive. Problem solved? Not quite – enter the U.S. healthcare system to complicate matters.
When his three month prescription for this beneficial drug runs out, Dr. Carroll must get a new prescription from his doctor. Before he can get that new prescription, he has to have lab tests to make sure the side effects of the drug aren’t causing anemia. The labs where he might obtain the testing are not all covered by his insurance, and those that are covered are subject to change, necessitating new lab testing orders from his doctor. This leads to frequent miscommunication with his doctor’s office, which faxes the old lab order to the new lab facility not realizing they won’t accept anything but a newly written order. Other foul-ups occur in the reporting of the lab results, changes in mail-order pharmacy requirements, and getting the pharmacy the payment before his prescription runs out. Stress of course exacerbates his condition, and he must go through this very stressful process four times a year.
In Dr. Carroll’s words: “There is no bad guy here. I love the drug company that created this medication. The price is more than reasonable. I love the doctor who prescribed it to me. My insurance company has never refused to cover my care, and has always been honest with me. The laboratory personnel are professional and competent. It’s the system – the way things work or fail to work, together – that’s the issue.”
What does all this have to do with health literacy? Remember that the definition of health literacy (according to the Affordable Care Act) is, “the capacity to obtain, communicate, process, and understand basic health information and services to make appropriate health decisions.” If the healthcare system is unnecessarily complicated and cumbersome even for healthcare professionals, it cannot help but make it that much more difficult for all of us to make appropriate health decisions based on our understanding of the information and services at hand. So, it is vital that all of us – healthcare providers and administrators, educators, caseworkers and community activists and leaders, as well as individual patients and family members – work together to identify and address those areas of healthcare that do not work seamlessly for the patient or provider. Only then can we hope to improve general health literacy beyond the current 12% proficiency level.