Guinea boy—My son’s adventures as a medical study participant
When a doctor at National Jewish Hospital mentioned one of our sons was a good candidate for an asthma research study they were conducting, my first instinct was to think no and no and no. But I listened out of the corner of my ear while trying to think of a good excuse why my boy wouldn’t be theirs to experiment on.
I was envisioning mysterious pills, bizarre side-effects, and people in white coats clutching clipboards and jotting notes as my son drank foggy Frankensteinian elixirs. Then, they’d feed him a Hot Wheels fruit snack and say “Good boy.” Not my kid, thank you.
She told us the study would investigate medicines which were already FDA approved, on the market for years, and used daily by thousands of people—including my son. The safety and effectiveness of these medications had been established. The doctors were hoping to determine the best combination of medications. The results would set national and international asthma care recommendations.
The costly medications we had been paying for would be provided for free. Our fat copays would go bye-bye. He’d be monitored by the research group and a doctor every four weeks.
Our son would be financially compensated for the work he’d have to do: Keep diary cards and record doses, times, dates, and symptoms. I’d receive a small compensation for travel expenses.
I told the doctor I’d discuss it with my husband. I admit by the time we left the hospital that day I was sold on the idea of learning more. We spent a few days mulling the possibility. Our son was already taking the study drugs and had been for years, so we couldn’t argue we were putting him at risk by giving him something new and untested. If we could get those same medications and his medical care free for one year, why not? I made the phone call to the research office.
The first step was filling out paperwork. It was sent in the mail and I think the packet weighed about 82 pounds. Even though the medications were already approved, I could tell they took safety and disclosure very seriously as I waded through information sheets, disclosures, releases, and medical history forms. I signed so many papers, I think I may have inadvertently bought a small bungalow in Lakewood, too.
My son and I had an appointment to meet the research study coordinator. We delivered the paperwork and got initial qualification based on his history. I was given a list which showed all the visits we’d have in the coming year. He’d need bloodwork and a physical exam and he’d have to do a few visits before being officially inducted into the study. It seemed a little overwhelming and would require diligence and responsibility.
He did make it into the study. Our son would be one of several dozen kids helping to improve asthma care for other kids. To celebrate, he was given a cool dude messenger bag by the research staff. He used it for school and to carry his research meds and diary cards back and forth to appointments.
For the next year, my son took his job very seriously. I was proud at how well he tracked his data at home. That experience alone will serve him well in coming years. It piqued his interest in medicine, science, and technology but did nothing to improve his handwriting, dang it.
That year also brought us closer together. I took him to a majority of the appointments. It was just the two of us, and it was really nice getting to spend time with him those days. After his appointments, we’d have lunch or go get a treat. He missed some school, but we tried to schedule visits on days off, half-days, or over lunch hour to minimize lost time.
Another nice bonus? We got to know the researchers well. They are truly wonderful people who love children and strongly believe in eradicating the devastating effects of childhood asthma. For now, there is no cure but there are fantastic medications out there that weren’t when I was a little girl. When I think of the weeks of school I missed, the ER visits, the ambulance rides I took, and my hospitalizations I know the only reason my asthmatic children are spared these scares is because of medical research.
Maybe, by the time my son is a dad, there will be no asthma. Until then?
Consider lending your help. If you have kids who suffer from allergies, asthma, or eczema and you live in the Denver area, National Jewish is the place to go for care. You can also get involved in the important work of research. For example, right now they are looking for “little wheezers” or kids between the ages of 1-4 for a study.
I am glad we had this experience. It was a privilege to see research in action.