Health Literacy and Rare Diseases

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Have you heard of health literacy? It’s the ability to obtain, read, understand, and use health information to make decisions. A variety of skills are needed, including reading, writing, listening, speaking, understanding and working with numbers, analyzing, and communicating. Believe it or not, more than a third of U.S. adults have low health literacy. This group includes people who:

  • are older.

  • have a limited income.

  • have a lower education level.

  • are non-native English speakers.

  • have a chronic health condition.

Since October is Health Literacy Month, it’s the perfect time to look at health literacy and its impact on the rare disease community.

 

The importance of health literacy 

Nothing is more important than the health of ourselves and our loved ones. This is why health literacy is vital to our quality of life. Without it, we may not understand what we read or what our doctor tells us about a health condition. As a result, we may not follow healthcare instructions or take medications correctly. These behaviors could have dire health consequences like injury or even death. 

Doctors, patients, and their caregivers have a shared responsibility in health communication and literacy. Doctors need to explain health conditions and treatment options in ways that are easy to understand. In turn, patients and their caregivers need to ask questions until they comprehend the information.

 

Health literacy and rare diseases

Rare disease families are well aware of the challenges in health literacy. With much less information about rare diseases, it is harder for parents, and even doctors, to get accurate information regarding how to find a diagnosis, care, treatment, and support from other families.

 
 
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Vicki VanArsdale

Vicki VanArsdale has a Master of Science in Health Communication from Boston University and works as a Senior Communications Specialist (government contractor) at the National Cancer Institute’s Center for Biomedical Informatics and Information Technology. She also has a freelance medical writing business and is on the board of the American Medical Writers Association (Mid-Atlantic Chapter). 

Her mother’s diagnosis of Alpha-1 Antitrypsin Deficiency—a genetic condition that affected her lungs—sparked Vicki’s interest in genomics and eventually led her to the Rare Genomics Institute. She volunteers as a copywriter, using her expertise in marketing communications to help others get the information they need.