Ask the Experts
What could be more important than every breath your child takes? Stony Brook Children’s Hospital’s pediatric pulmonology services help Suffolk County children with everything from asthma and chronic lung diseases to cystic fibrosis and sleep disorders. Here, Division Chief Catherine Kier, MD, talks about new ways Stony Brook Children’s is helping the children (and their parents) breathe easier.
What is pediatric pulmonology?
Basically, pediatric pulmonology deals with all types of respiratory diseases that affect children — from the common cold to inherited chronic diseases. Here at Stony Brook Children’s, we offer the latest protocols and state-of-the-art technology to ensure that the children of Suffolk County have access to advanced pediatric pulmonary care. In addition, we have a fully accredited pulmonary function laboratory for assessment and diagnosis. This includes full pulmonary testing, spirometry, exercise and cold air challenge, allergy skin testing and allergy blood testing.
How does the pediatric pulmonary team work with children?
We take a completely comprehensive approach. Each child’s team is led by a board-certified pediatric pulmonologist and can include a pediatric pulmonary nurse practitioner, respiratory therapist, pulmonary function technician, sleep technician, social worker, dietician, physical therapist, pharmacist, and even a geneticist. Together they make an initial assessment and diagnosis, develop a plan of treatment, perform interventions and provide follow-up care for as long as the child needs it. The care is highly individualized, and is frequently adjusted as the child grows and needs change.
Stony Brook Children’s has a Cystic Fibrosis Center — how does that help the children of Suffolk County?
Stony Brook Children’s Cystic Fibrosis Center is just one of 121 centers in the country accredited by the Cystic Fibrosis Foundation. This means that it has gone through (and continues to go through on a regular basis) a rigorous evaluation that examines every aspect of care and services. It is also one of 18 cystic fibrosis centers in the nation selected to participate in a leadership and learning collaborative sponsored by the Cystic Fibrosis Foundation. In fact, Stony Brook’s Cystic Fibrosis Center is serving as a model for other centers focused on a specific disease. They look to our multidisciplinary approach, our strong research focus, our state-of-the-art technology and the long relationships we build with patients and families, as those with cystic fibrosis live longer lives.
Is that one of the biggest changes — the greater lifespan of patients with cystic fibrosis?
Absolutely. Life expectancy has increased dramatically and continues to rise. For example, the median age of survival for an individual with cystic fibrosis in 2003 was 33.4 years. In 2015 it rose to 41.6 years. That’s remarkable: a more than eight-year increase in a decade.
What can these changes be attributed to?
A better understanding of the disease process, more proactive care, a multidisciplinary patient- and family-centered approach, and ongoing research strides. Just recently, in fact, two new medications have been approved by the FDA, which has created great excitement in the cystic fibrosis community. One drug targets just four percent of the cystic fibrosis population but the other is viable for one-third of the population. The challenge right now is the high cost. Our team at Stony Brook works tirelessly to get these medications to our community. We liaise with insurance companies, the drug manufacturers and other organizations to help make these drugs accessible and affordable. If there is something available that we know will help our patients, we do everything in our power to ensure that we can get them to them.
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