ARTinMEDICINE

John Saito, MD

Health Literacy Project

BACKGROUND

Cystic Fibrosis is a life shortening genetic disease that affects approximately 30,000 Americans and many more worldwide. If not recognized and diagnosed early in life, children with cystic fibrosis can suffer from malnourishment and recurrent lung infections that irreversibly damage their lungs. Many with cystic fibrosis often die from their lung disease.

In the US, many states have recognized the benefit of early diagnosis and are moving to adopt newborn screening to identify infants with cystic fibrosis so preventative therapies can be initiated to avoid the long term consequences of late diagnosis. Newborn screening will allow identification of cystic fibrosis in not only Caucasians, but also Hispanics, African American, and Asian. As the size and diversity of the cystic fibrosis population grows, there will be a need to improve both the health literacy of children and families of children with cystic fibrosis.

Low “health literacy” or the ability to read, understand and effectively use basic medical instructions and information is an emerging public health issue. Low health literacy costs our health system as much as $58 billion a year (Source: Partnership for Clear Health Communication). Although low health literacy can affect everyone regardless of background or educational level, studies show that limited literacy skills are a stronger predictor of an individual's health status than age, income, employment status, education level, and racial or ethnic group.

In our current healthcare environment, developing accessible, entertaining, engaging, and educational material about cystic fibrosis for both children and adults are of primary importance.

PURPOSE

I hope to achieve several objectives through Magic Paint Brush:

1. Artistically, I want to continue my commitment to bringing to art the life of medicine. I find that the synthesis of visual art with storytelling to be a powerful communication tool that is accessible by readers of all ages, educational levels, and cultures.

Conceptually, the “magic paint brush” is a tool used to enter into the perspective of the child or person. If this endeavor is successful, I hope to publish stories created from the patient’s unique perspective (i.e. “Little Macy and the Magic Paint Brush, Manuel and the Magic Paint Brush, Tamika and the Magic Paint Brush, etc…).

2. Medically, Magic Paint Brush will address issues faced by many of those affected by CF.

3. Socially, Magic Paint Brush will raise public awareness of cystic fibrosis. With greater understanding and better public health policy, children with CF will continue to live, not only longer, but better lives.

3. Personally, I want to help children affected with cystic fibrosis to see themselves as heroes, not only to their families, but to their caregivers and other children all over the world. More than that, I want this to be a beginning…. Of a story that will end with a cure.