Every day I’m supposed to take two puffs of from an inhaler that contains something called “corticosteroids”. As someone with asthma, my untreated airways will eventually become restricted, inflamed, likely filled with mucus and a risk for an attack that — at its worst — can put me in a hospital.
I also carry with me an emergency inhaler for flare ups triggered by any variety of factors: pollen, mold, dust, animal dander, stress, sickness. For years, this has been something I’ve always needed to have with me and I would get nervous about forgetting on a trip — even just if out of town.
Inhalers aren’t cheap. The controller daily steroid costs about $1 per puff. I literally have to pay $2 a day to just to breathe like a normal human being. As I joked with a friend once about the cost of inhalers, it’s like out of “Goodfellas” with the pharmaceutical mafia coming to your door every morning and saying, “Hey, you wanna be able to breathe today? Fuck you, pay me.”
I’ve lived with asthma my entire life, since the earliest days of my childhood. I can remember late night asthma attacks and being in the emergency room with my parents breathing in medicine from a steam machine through a mask and being injected with a shot to open my airways quickly. There was the battery of tests at an allergist that turned the skin on my entire backside into an itchy science experiment to confirm that, yes, I am allergic to almost everything conceivable.
Then, starting in second grade, came the allergy shots. At first, several times a week. Then once a week. Then every other week. Then every few months. Naturally, flu shots every flu season, too. In the end, I believe it all helped. My asthma got under control. I haven’t had a serious incident putting me in a hospital.
I don’t fear needles anymore, but I do still fear not being able to breathe. It’s like drowning without any water. You fight to take the deepest breath you can, and yet get a fraction of the air you need. It’s like the invisible hands of demons moving inside your ribcage and clenching their fists.
I watched Apple’s “Spring Forward” keynote last week and while most of the hype surrounded the new Macbook and details of the Apple Watch, the part that I found myself interested in was their introduction of ResearchKit and how one of the first apps to use it would be to conduct asthma research.
I’ve never participated in a medical study before, nor have I been contacted and asked to participate. I’m a firm believer in medical research and without the foundation it built to provide treatments for a kid like me, I can’t begin to imagine how much more awful life would’ve been for me and every other kid who has asthma.
But research never stops and I don’t think you can ever have enough data — and I’m glad to see we now have a way to enable medical research with better tools and greater reach through mobile technology. I was eager to be a part of it and downloaded the Asthma Health app.
Downloading the Asthma app didn’t take very long, but the sign-up process is a bit lengthy. You have to watch an 8-minute video, read a decent chunk of material, fill out forms and even take a short quiz to make sure you understand what you’re signing up for. And, yes, sign your consent. Honestly, it’s unfortunately bureaucratic and a huge hurdle for users to get through and start using the app. I wish it could be shorter and simpler, however, I don’t think it’ll ever be better than this because of legal reasons.
After that, you answer a few general questions about your health and what your experience with asthma has been. Each day you’re asked to fill out an 8-question survey — one of which is to enter your peak-flow meter reading (I don’t have one anymore, but it got me thinking maybe I should buy one).
It’s dead simple to use and you can set up notifications to remind you to fill out the daily survey. If you’re using a fitness tracker, you can add that data into the app as well automatically.
If you have asthma and an iPhone, then consider getting the app and being a participant in the study. It’s also worth noting that ResearchKit apps for diabetes, breast cancer, Parkinson disease and cardiovascular health are available.
It’s weird to think about a consumer technology company getting into open-source frameworks for medical research, but I’m really thrilled they’re taking the first steps to help others do meaningful work. Hopefully, their same customers will respond and be a part of these studies. It’s only a few taps a day.
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