Hard to believe, but this week I began my 8th year as a research subject for the Severe Asthma Research Program (SARP).
This is actually the 3rd study (SARP III) in a series of 3 that started back in the early 2000s. Each had a different focus. They stopped recruiting new participants for SARP a couple of years ago after SARP III began, but some of the earlier participants stayed on for an additional 3 years as part of a longitudinal study. That’s what Im basically doing this week.
I did my first couple of years of SARP (SARP II) at UPMC back in 2009 with Dr Wenzel at the helm. Then switched over to the UCSF when they opened the program there, which is much closer to where I live.
This time around it was pretty much the same stuff. Lots of questionnaires regarding symptom severity, medication adherence, sleep issues, psychological burdens, that sort of thing. They also had a new questionnaire pertaining to diet. Then there were the usually battery of pre and post PFTs ( Spirometry ) and the exhaled breath condensate test. Due to shrinking funds, they discontinued the exhaled Nitric Oxide(FeNO) check, but there were a lot more blood tests this time, including genetics testing for RNA to compliment the DNA they took at the beginning of the study. As always, I was excluded from the doing sputum induction test, because it tends to throw me into bronchospasm.
As far as Spirometry goes, my numbers were pretty much the same. My FEV1 still hanging out in the 20’s. The biggest difference this time, is that my numbers did not improve after 4 puffs of Albuterol, or even 20 minutes later after taking an additional 2 puffs. Since there was no improvement after 6 puffs, there was no need to do a 3rd repeat of the test. This non-reversal is somewhat troubling, because Ive always reversed to some degree in previous tests. Btw, for the SARP purposes, a reversal is considered an increase of at least 12% from baseline after inhaling albuterol.
After doing this for 8 years, Im getting to be an old pro at it. The question is, will I be back for a 9th year? I hope so, but given the current political climate, research dollars for studies like SARP are dwindling fast. The coordinator was telling me that with the exception of some scant corporate contributions, government funding for SARP III has pretty much dried up. She fears she’ll be looking for a new job, sooner rather than later. The good news though, is that the SARP has gained and shared a wealth of information from all the data it’s collected over the years and will continue to do so long after the study ends. This makes me feel like my participation in the program might actually make a difference and perhaps bring us a little closer in ridding the world of this horrible disease.