Such a program, the CVS/pharmacy Draw A Breath Asthma Education Program, came to Rhode Island in 1997. Its goal is to ensure that every child who suffers with asthma lives a normal, happy life—free of the fear of not being able to breathe.
Award-winning children’s author and illustrator Chris Van Allsburg and his wife Lisa know all about this fear. Their daughter Sophia was diagnosed with asthma when she was a toddler. Lisa will never forget the events of one early spring night:
"Sophia was breathing very quickly. When she inhaled, I noticed that her whole ribcage was exposed; her skin was tight against her back. I called our doctor, who told us to go to the emergency room. I walked into the emergency room and said, ‘My daughter’s going to die.’ She was admitted immediately.
I remember feeling one thing: helplessness. I thought, ‘How could I end up in the hospital with a child with asthma?’ We were there three days. She was given heavy doses of steroids to help her breathe normally, which I should have been giving to her at home, but I didn’t understand it. I wasn’t confident enough. She had an oxygen unit attached to her for two nights. I thought, ‘If I’m here, what about all the other mothers and fathers in the world? People who are as well-intentioned as I am, but work all day and don’t have the time to understand this. And I got really frightened."
Enlisting a group of asthma experts, they created the CVS/pharmacy Draw A Breath Asthma Education Program. Coordinating director Jill Jaffe says the first initiative was a series of educational programs designed by doctors, registered nurses, respiratory therapists, physical therapists and child psychologists. Located at Hasbro Children’s Hospital, the programs teach children and their parents how to recognize the onset of an asthma attack, how to use medications and how to eliminate asthma triggers from the home.
In 1995, 17,000 young Rhode Islanders were diagnosed with pediatric asthma. Jaffe says families need support and education to help them cope with an asthma diagnosis. "The length of stay in the hospital is usually two days. Families are too traumatized initially to absorb the onslaught of information, and then it’s time to go home." As a result, the education programs will be available for inpatients and their families, patients who have come to the emergency room and been released, and children who are referred by their pediatricians. Children and their families will be able to attend as many courses as they wish, and can return for refresher courses or when their medications are changed.
Another goal of the Draw A Breath program is to furnish pediatricians’ offices with "a really funny, funky storybook on how I can manage my asthma," says Lisa Van Allsburg. The program also hopes to provide plastic lungs for doctors to show their young patients: one side has a normal lung, while the other half shows a lung with asthma. "If a mother could see what a lung looked like with asthma," Van Allsburg says, "she’d never leave the house without proper medication."
During the second phase of the program, Draw A Breath hopes to see legislation passed allowing children who attend informational courses to receive a certificate to carry their asthma medications to school—something they are prohibited from doing under the current zero-tolerance drug policy in schools. "Children should not have to go to the school nurse to get asthma medication," she says.
Jaffe says Draw A Breath is also investigating ways to provide asthma medication for low-income families. "Medications are expensive. We hope to keep people well by providing access to medications."
Van Allsburg says that experience has taught her what parents and children need in order to live without fear: "It takes confidence. It takes education. Sophia has never had a cough that wasn’t an asthma cough. You learn what an asthma cough is. You also learn that each kid has a different onset of asthma. I now know that if my daughter catches a cold, I need to start her treatments right away. Because we know the early warning sign, we have not been back to the emergency room."
"Until I know that most children are living free lives and not in the hospital with asthma, I won’t relax," Van Allsburg says. "I’ll feel our work isn’t done yet."
Find out more about the CVS/pharmacy Draw A Breath Asthma Education Program.