In any given year, five to 15 children in Philadelphia die of asthma.聽Uncontrolled asthma doesn鈥檛 take as many young lives as cancer, but most asthma deaths are preventable. And pediatricians admit to a poor track record helping families keep the condition in check.
鈥淓ven if it doesn鈥檛 fit into their life, we say: 鈥榊ou have to do this,鈥� said pediatrician聽Hal Byck, who cares for kids at Nemours Children鈥檚 Clinic in Northeast Wilmington, Del. Byck鈥檚 philosophy is different from what he described as the prevailing attitude of the medical system that he thinks needs to change: 鈥淚f they don鈥檛 do it, it鈥檚 not our fault: it鈥檚 their fault.鈥�
Asthma is a chronic inflammatory disease that requires lifestyle changes to tamp down triggers and vigilance to ward off attacks. In a typical attack, airways become inflamed and swollen; muscles squeeze and tighten; and mucus build-up makes breathing difficult. But it鈥檚 the time after the attack that can make managing the disease a challenge.
鈥淲hen you no longer have that asthma attack, there鈥檚 so many other pressing issues in your life, that the asthma takes the back seat until the next asthma attack,鈥� 聽Byck said. 鈥淲e have to try to get them in again, when they are not wheezing, to discuss the importance of taking preventive medicine.鈥�
Byck says managing asthma often means taking maintenance medication twice a day鈥攅very day.
鈥淚 think a lot of people are fine with that the first two weeks, three weeks, four weeks, but as time goes on and they see their child not really having these wheezing episodes, people in their mind think giving a medicine everyday might be harmful, so they stop it because the child is doing well,鈥� Byck said.
Pediatrician Tyra Bryant-Stephens leads the asthma prevention program at the Children鈥檚 Hospital of Philadelphia. She says it never works to just send parents home with medicine. They need to understand the drug side effects, and why the medication is less harmful than not using it.
Bryant-Stephens says many parents struggle to accept that asthma is a chronic illness.
鈥淲ho wants to say my child is sick every day of his life?鈥� she said.
On the policy side, Bryant-Stephens would like to see insurance companies pay for a bundle of care services including time with a health educator and help making the home asthma friendly.
The team approach can help all children with asthma, but Bryant-Stevens points out that the stakes are particularly high for black and Latino communities. A screening study at 16 Philadelphia schools found the highest asthma rates at schools with the most African-American students.
鈥淜ids who are black, kids who are Latino, they have two to three times more hospitalizations and are five times more likely to die,鈥� Bryant-Stephens said.
Genetics likely plays a role, but poverty and living in an urban environment also contribute to risk.
Truly treating asthma takes a team, so Children鈥檚 Hospital offers extra help to some of its community clinic patients.聽Lay health educators visit patients at home and hold information sessions for kids and adults.
鈥淭he families that attend our classes were better able to manage their medications, less likely to go to the emergency room and hospital,鈥� Bryant-Stephens said.
The program enrolls about 100 children each year, but Bryant-Stephens guesses that 3,200 patients could probably use the help.
Barbara Washington worked as an asthma educator for the Health Promotion Council before that program lost its funding two years ago. She says moving patients into regular treatment starts with asking lots of questions.
鈥淲hen was the last time you saw your doctor? Do you have a regular doctor? Is the school aware your child has asthma?鈥� Washington said.
She also understands how frightening it is when your child can鈥檛 breathe. Washington鈥檚聽daughter is an adult now, but developed asthma at age 6.
鈥淣ot knowing what to do, I would just wrap her up and we would rush off to the emergency room,鈥� she said.
The experts say a few inexpensive at-home changes, and some new habits, can keep kids breathing easier.
Now that his asthma is controlled with medication, Cameron James says that when playing tag, his legs give out long before his breath does. (Photo by Taunya English/WHYY)
In Wilmington, mom LaSheena James vacuums a little more often and keeps her son鈥檚 daily inhaler medicine right beside his toothbrush.聽Cameron is a first-grader.
鈥淗e did miss quite a few days. It would happen in the spring, he鈥檇 miss a few days, then he鈥檇 come back to school. The change of season is when it occurs more frequently,鈥� James said.
Cameron carries an inhaler in his bookbag and has a backup stored in his classroom. The Jameses have no pets and smoking is strictly forbidden in their home.
鈥淚t鈥檚 very scary. I鈥檓 constantly watching the news for the pollen count. I鈥檓 kind of afraid to have him participate in outdoor activities,鈥� James said.
Actually, Cameron says, recess is no problem these days.
鈥淭amir, Elan and Nazir and Jaden鈥搘e play catch and tag.聽I鈥檓 faster than the little kids and the big kids, except for Tamir. He鈥檚 faster than all of us,鈥� he said.
Cameron says his legs give out long before his breath does, and pediatricians say that鈥檚 one sign that a child鈥檚 asthma is under control.
Hal Byck is Cameron鈥檚 doctor and says that, working by himself, a doctor is not enough.
鈥淲ithout getting into the community we are never going to make great strides in treating asthma,鈥� Byck said.
鈥淚 do think it is reasonable to pay for community health workers, to have at least a couple of visits, [it] doesn鈥檛 cost that much to do that and one hospitalization you鈥檙e talking thousands of dollars,鈥� said Children鈥檚 Hospital pediatrician Bryant-Stephens.