Macular Degeneration and Me

Low Vision and High Hope

Health Literacy

September 8th is International Literacy Day and a good time to take a look at health literacy. What is health literacy? It is the ability to read, understand and use medical information to make decisions and follow instructions for treatment. It also involves the health care provider’s ability to communicate in an easy-to-understand and jargon-free way. It involves following prescription instructions, filling out health care forms, directions from your health care provider, appointment slips, directions for care, etc.

Now add to this, complex medical terms, diseases with unpronounceable names, language and cultural differences, reading comprehension and conceptual levels and for those of us with macular degeneration, low vision, and you can easily understand why the emphasis on health literacy.

As I was researching this topic I found many, many instances of people not understanding or misunderstanding their diagnosis. Some of these people were terrified and, sometimes, for no reason.

No matter what your reading skills are, and it is reported that 90 million people in the United States read at less than an 8th grade level, you need to make it a priority to clearly understand the issues surrounding macular degeneration. (or any other medical condition).

People with higher reading skills are also affected – just trying to figure out prescription drug interactions or trying to read the paperwork that comes with the prescriptions – written in the smallest font possible of course;  and what about the convoluted billing from hospital or insurance companies – none of these things done so that the layperson (who uses them) can easily understand.

For me the difficulty of understanding my ocular scan was further complicated by my former ophthalmologist who insisted in showing it to me after my eyes were dilated.  He never figured out this wasn’t a good plan.

The costs associated with poor health literacy are staggering – longer hospital stays, emergency room care, higher prescription costs, time trying to understand the billing or what your insurance company’s explanation of benefits means, reams of paperwork – and these are just a few of the cost issues.

If you are interested in learning more about health literacy there are many studies by academics and organizations available by just typing health literacy into your search engine.  I am including an easy-to-read report below for those that want to learn more.

PRO-ACTIVE TIP:  always bring someone with you to act as an advocate.  Ask questions, don’t leave until you know and understand the answers.

Health Literacy


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