On May 1, 2018, – World Asthma Day – the Asthma and Allergy Foundation of America (AAFA) released the Asthma Capitals™ 2018 report. This report ranks the top 100 Asthma Capitals in the U.S. It highlights the widespread impact asthma has on our nation. For 25 million Americans, asthma is a challenging disease that can have physical, emotional, social and financial impacts. During National Asthma and Allergy Awareness Month, we will share personal stories from our top 20 capitals to show what life is like managing asthma.
Nancy and Oziel Gomez
#11 Asthma Capital: Boston, Massachusetts
As Nancy Gomez knows, managing a child’s severe asthma can take a big toll on a parent’s time, finances and emotions. Nancy’s 10-year-old son, Oziel, has had asthma and allergies since he was a baby.
Today Oziel has environmental allergies to pollen, animals, dust, smoke and more. His allergies, exercise and cold weather all trigger his asthma. On top of this, Oziel also has life-threatening food allergies to peanuts, tree nuts and dairy. And he is autistic. Managing all of this is a constant challenge for Nancy.
Getting the Care Oziel Needs
“Oziel’s asthma management has been hard on us,” Nancy explains, “due to the time we must spend traveling to get treatment at Boston Children’s Hospital almost every week.”
Boston is not actually that far from Lowell, Massachusetts, where the Gomez family lives. However, traffic makes it a very long drive. On a normal weekday when Oziel has appointments, it takes them one to one-and-a-half hours to get there. If there’s a major sports game happening, the drive can take two hours. The Gomezes make the drive because the local allergists are not able to provide the care that Oziel’s complex situation requires.
Sometimes when Oziel has a severe asthma attack, there isn’t time to get him to Boston Children’s Hospital. So Nancy takes him to the emergency room at the local hospital. Unfortunately, this can be a problem.
“If Oziel needs albuterol every hour, our local hospital can’t do anything,” Nancy says. “Their protocol is they won’t give albuterol more often than every two hours. So they stabilize him, and then I have to transport him to Children’s Hospital.”
Between asthma attacks, medical treatments and follow-up visits, Oziel misses a lot of school and Nancy misses a lot of work. Oziel gets both Xolair injections and allergy shots every other week. Until recently these had been given in different weeks.
“Right now they’re trying to merge it onto the same day to help me out,” Nancy shares. “Going weekly was straining me financially. We’re not on state aide, and he sees other specialists at Children’s Hospital for other conditions, too.”
In addition to these treatments, Oziel uses a controller inhaler at home every day. He uses a quick-relief inhaler when needed. When his allergies flair, he also takes Zyrtec and Flonase. In spite of all of this, he still ends up in the emergency room for asthma a few times a year.
Paying for Treatment
The Xolair injections have made a big difference for Oziel. He used to need his inhaler nearly every day. Now he only uses it two or three times a month.
Nancy says that “he used to get off the bus from school screaming for his quick-relief inhaler because he couldn’t breathe! But it’s very expensive medication. My insurance covers it, because we proved that he medically needed it. But I had to sign a waiver to get MassHealth [the state insurance] to help me with his copay and deductible.”
“It’s been a financial strain on me as a single parent to afford all of his medical care and traveling expenses within my budget,” Nancy adds. To make up for this, she picks up a lot of extra hours at work to get by financially.
Nancy says it feels as if everything is an asthma trigger for her son. Cold weather, physical activity, dusty areas, animals and smoke are all problems for them year-round. Because of this, Nancy does not allow Oziel to play outside in the winter time, and he often cannot exercise. Things get worse in the spring when the pollen counts are high.
“The spring triggers the allergies to go crazy and that triggers the asthma to go crazy,” Nancy states. “He is usually hospitalized every spring.”
Oziel’s autism makes asthma management more difficult. Oziel cannot always remember instructions. He needs to be prompted a lot. So, for example, he won’t remember that he shouldn’t run when he is having an asthma flare.
“A problem I have,” Nancy shares, “is that he doesn’t express that he can’t breathe until it’s too late. Unless he wheezes really bad, I can’t always tell. So that’s why usually by the time I get to the ER, they can’t control his asthma.”
Dealing With the Impact
Oziel struggles with wanting to do things he cannot do, such as play in the snow. It can be a lot for a 10-year-old to handle.
Nancy struggles with the worry. “I think my main concern is being able to get him to the hospital on time,” Nancy relates.
When Oziel has a severe asthma attack, Nancy drives him to the hospital herself. She doesn’t call 911 because it’s another expense and she lives paycheck to paycheck. Nancy’s main insurance is private insurance. She wants to avoid getting a bill for $500 for the ambulance.
“Last year one time, I thought I wasn’t going to make it to the hospital on time,” Nancy recalls. “He was in the back seat hardly getting any air. He couldn’t sit up straight. We barely made it.”
“There’s times when I don’t know how I manage,” Nancy adds. “It gets very stressful. Especially since it’s not something acute where a child is really sick and then gets better. You have to be on top of that medical care all the time.”
The Asthma Capitals™ 2018 report is an independent research and education project of the Asthma and Allergy Foundation of America made possible with support from Sanofi Genzyme and Regeneron.