For 17-year-old Marquis Lewis, it begins with a hacking, relentless cough. His heart pounds, his neck strains and his chest sinks in—all signals of his lungs’ desperate fight to capture even the smallest bit of air. “It gets real tight,” Marquis says, pointing to his chest. “It’s like I’m fighting just to breathe.”
Marquis, a Children’s Hospital Boston patient, is describing an acute asthma attack—a scenario that’s all too familiar to seven million U.S. children. The most common chronic childhood disease, asthma causes a narrowing and swelling of the airways in the lungs. With proper management and the correct use of medication, children with asthma can usually live normal, active lives. But it has no cure, and when it’s not kept under control, it can be debilitating and even fatal.
Marquis was 18 months old when he experienced his first attack. It was a bout so severe that he was hospitalized in Children’s intensive care unit (ICU) for two days. For the Lewis family, these early attacks were only the first chapter in what would become a long and grueling cycle of sleepless nights, absent school days and financial and emotional strain.
Marquis—like many chronic asthmatics—suffers from severe allergies. Coming into close contact with dairy, nuts, eggs, or other triggers would cause a rash around his mouth and could result in asthma attacks. Each year, his asthma progressively got worse. On cold winter days, his grandmother would need to pick him up from the nearby bus stop, since Marquis was unable to walk home without coughing and wheezing intensely.
The situation reached a critical point in the ninth grade when Marquis missed 72 days of school in a single year, causing him to have to redo his freshman year. “I would get down on myself because I was falling behind in school and I would hide the fact that I was having an asthma attack so I wouldn’t miss school,” he says.
But that all began to change when, at age 16, Marquis was introduced to Children’s Community Asthma Initiative (CAI), an innovative program led by a group of health care providers, asthma educators and administrators.
CAI studied patients who were admitted to the hospital for asthma and found that they were being prescribed the right medications, but many weren’t taking them correctly, if at all. According to their findings, the biggest obstacle to care was communication problems. It’s a tricky disease to manage because its treatment can require various tools and medications and symptoms can be caused for a host of different reasons.
And while asthma affects children of all walks of life, it hits low-income Latino and black families particularly hard. Due to a wide range of socioeconomic challenges, including poor housing, higher pollution levels in inner-city neighborhoods and the challenge of paying for asthma medications, hospital admissions for asthma are five times higher for black and Latino children than for white children.
With such a complex condition, doctors and nurses at Children’s were struggling to make much headway during brief conversations with their patients. “Can you really educate someone about asthma in the course of a 15 minute outpatient visit? The short answer is no,” says Shari Nethersole, MD, Children’s medical director for community health. “We knew we needed to get into the homes and into the fabric of the community.”
To reach patients more directly, CAI developed a strategy to bring asthma education and management into families’ homes. Nurse case managers who specialize in asthma began to make home visits to local families struggling with asthma. This approach gave them a birds-eye-view of potential household triggers, while improving communication between patients and their caregivers. CAI staff often spend more than an hour during an initial home visit, ample time to teach both children and parents how to take control of their asthma in a setting they’re already comfortable with— their own homes.
On a visit to the Lewis house, CAI staff noticed that Marquis was not properly using his Albuterol inhaler, which meant that the asthma medication was getting to the back of his mouth, but not down into his lungs where it would be most effective.
Working closely with the staff member, the Lewis family pored over asthma educational materials to learn more about the basics of asthma, its triggers and medications. She showed the family how to use natural household cleaning products like white vinegar and baking soda, which is less likely to trigger asthma than its chemical counterparts. She also gave the family special bed covers to reduce dust mites and peak flow meters to measure how well air moves out of Marquis’s lungs.
The impact has been remarkable. One year after participating in CAI, Marquis’s emergency room visits have been cut by at least half, he’s missing fewer school days and his grades have improved. He even played starting point guard in three city basketball leagues last summer, and is planning on attending Northeastern University on a full scholarship. “I feel like I have control of my asthma rather than it having control of my life,” he says. “And I can do the things I like to do with more confidence.”