It’s been a few weeks since this happened. I wasn’t as worried as I usually am about recording it “in the moment” because the film crew came to visit and filmed the entire thing.
Our trial of Pirfenidone came to an end and so after three years, I had the option of learning whether I was on active drug or placebo. My curiosity, of course, would have gotten the better of me – I had to know.
By the time the NIH was ready to tell me, however, I was somewhat resigned to being indifferent about the answer. Perhaps a coping strategy my subconscious had created – perhaps it really isn’t that big a deal after all – either way I was ready.
I had been worried that if I was on placebo, and had improved so much on my own, that the NIH would decide I was prone to the power of suggestion and decide I wasn’t a good research subject for future studies. The research is so important. I would never want to throw things off because of my own psychological baggage. The thing is I know in my heart I tried my utmost at every single pulmonary function test. Often I felt as though I might pass out because I blew on the tube with such gusto.
When the trial ended with no conclusion – and thus no opportunity to remain on the drug – my mind changed somewhat. I was worried that if I was on active drug, and that then that drug would be taken away, that I’d suddenly start to decline. Being on placebo suddenly had an upside – indisputable evidence that I was stable.
I warned the film crew that “the news” could be somewhat anticlimactic. They wanted to film it anyway, and I was happy to let them. It put a cap on this part of the HPS story.
So, in the midst of my apartment being at its messiest in years thanks to the study overhaul, the film crew arrived – Nicole, the producer, Joel the camera guy and Gabe, the sound person. I have to say I completely enjoyed a day hanging out with them. They’re just fun to spend time with!
Kevin called at the pre-arranged time. He was all business – and told me that indeed I had been taking a placebo for the past three years.
What was one going to say?
Things that make you go – hmmm…….
I really had thought I was on active drug. Although I had GERD before the trial, it had definitely been worse since the trial. I had a rash after being in the study about a month.
When the drugs were gradually introduced – one capsule a dose the first week, two the second week, and three the third for a grand total of nine a day – my stomach had gotten upset with each rise in dose. How do you do that without cause? It wasn’t just tummy cramps, it was outright severe runs.
I asked Kevin if there was anything about the placebo its self that might have caused this – maybe capsules that my tummy didn’t like – who knows. He assured me this was impossible. The placebo was simply made of essentially starch.
The cameras rolled as I began to call my HPS friends with the news. I called them first because I knew they’d understand any wacky thing that came out of my mouth – and that understanding bought me a little time to adjust.
We continued to film throughout the day and throughout the day there were various “wellness” checks on how I was feeling about things. Honestly, I was feeling relief.
That night I gathered some of my closest friends from the Kansas City area that had been supportive of HPS since my diagnosis. They’d all helped with fundraisers and emotional support. They all were also no strangers to chronic and serious illness. Everyone there had their own medical story to tell, if they’d been asked.
Tina J, who always has the best sense of humor, asked me if I still had a bottle of the pills in my “pharmacy” – what we call the backpack I carry with me at all times with my medications.
I did as it hadn’t yet occurred to me to take it out. I fumbled through the bag and plopped the now meaningless bottle in the middle of the table.
“Well, if they’re just placebos, we should all take one,” Tina J suggested, and everyone else agreed. We passed them around the table as if they were appetizers. I was slightly reluctant – I know the NIH had just told me they were harmless, yet somehow in my mind’s eye I saw Kevin frowning at this little exercise in comradeship. So much for Kevin……you can’t help but laugh at the scene.
My friends reminded me how tempted I’d been to cut open one of the capsules in the beginning of the trial to see if there was sugar inside. “Now that you know it’s a placebo, see what’s inside,” suggested Tina J, egged on by Tina B.
I opened one of the capsules and poured the white substance onto a restaurant placemat.
We all tasted it as if we were sampling something forbidden. Karen thought it tasted bitter, but I thought it tasted like flour.
Next the film crew wanted to film me following Kevin’s instructions to dump the pills down the toilet. We’d forgotten to film this back at my apartment.
The ladies room was too small for all of us, so we went to the men’s room. These poor men would come wanting to go to the bathroom, and we’d all have to pile out to let them go, and then pile back in again. I can’t help but wonder what the restaurant thought we were up to in there!
Joel filmed me pouring the pills into the toilet, and then he stuck the camera right down in the toilet bowl and filmed the capsules circling the toilet as I flushed.
Somehow it seemed like a symbolic ending.
Since then I’ve been asked a lot whether I’m angry that I was on a placebo all this time – after all – I did pay a high price to be in this trial. I changed life plans to be able to stay in the United States and participate in research. Missing work certainly was one (although one of several) death nails in my career.
The answer is no, I’m not angry. I knew going in there was a chance I’d be on placebo. I feel lucky that despite being on placebo, I’m doing as well as I am. Someone had to be on a placebo.
I also feel that if the trial was flawed in such a way that it would have not generated the answer we needed, than it’s better that it ended now and that research now focuses on something else. Otherwise, I really would have spent another three years on placebo for nothing.
Our trial of Pirfenidone came to an end and so after three years, I had the option of learning whether I was on active drug or placebo. My curiosity, of course, would have gotten the better of me – I had to know.
By the time the NIH was ready to tell me, however, I was somewhat resigned to being indifferent about the answer. Perhaps a coping strategy my subconscious had created – perhaps it really isn’t that big a deal after all – either way I was ready.
I had been worried that if I was on placebo, and had improved so much on my own, that the NIH would decide I was prone to the power of suggestion and decide I wasn’t a good research subject for future studies. The research is so important. I would never want to throw things off because of my own psychological baggage. The thing is I know in my heart I tried my utmost at every single pulmonary function test. Often I felt as though I might pass out because I blew on the tube with such gusto.
When the trial ended with no conclusion – and thus no opportunity to remain on the drug – my mind changed somewhat. I was worried that if I was on active drug, and that then that drug would be taken away, that I’d suddenly start to decline. Being on placebo suddenly had an upside – indisputable evidence that I was stable.
I warned the film crew that “the news” could be somewhat anticlimactic. They wanted to film it anyway, and I was happy to let them. It put a cap on this part of the HPS story.
So, in the midst of my apartment being at its messiest in years thanks to the study overhaul, the film crew arrived – Nicole, the producer, Joel the camera guy and Gabe, the sound person. I have to say I completely enjoyed a day hanging out with them. They’re just fun to spend time with!
Kevin called at the pre-arranged time. He was all business – and told me that indeed I had been taking a placebo for the past three years.
What was one going to say?
Things that make you go – hmmm…….
I really had thought I was on active drug. Although I had GERD before the trial, it had definitely been worse since the trial. I had a rash after being in the study about a month.
When the drugs were gradually introduced – one capsule a dose the first week, two the second week, and three the third for a grand total of nine a day – my stomach had gotten upset with each rise in dose. How do you do that without cause? It wasn’t just tummy cramps, it was outright severe runs.
I asked Kevin if there was anything about the placebo its self that might have caused this – maybe capsules that my tummy didn’t like – who knows. He assured me this was impossible. The placebo was simply made of essentially starch.
The cameras rolled as I began to call my HPS friends with the news. I called them first because I knew they’d understand any wacky thing that came out of my mouth – and that understanding bought me a little time to adjust.
We continued to film throughout the day and throughout the day there were various “wellness” checks on how I was feeling about things. Honestly, I was feeling relief.
That night I gathered some of my closest friends from the Kansas City area that had been supportive of HPS since my diagnosis. They’d all helped with fundraisers and emotional support. They all were also no strangers to chronic and serious illness. Everyone there had their own medical story to tell, if they’d been asked.
Tina J, who always has the best sense of humor, asked me if I still had a bottle of the pills in my “pharmacy” – what we call the backpack I carry with me at all times with my medications.
I did as it hadn’t yet occurred to me to take it out. I fumbled through the bag and plopped the now meaningless bottle in the middle of the table.
“Well, if they’re just placebos, we should all take one,” Tina J suggested, and everyone else agreed. We passed them around the table as if they were appetizers. I was slightly reluctant – I know the NIH had just told me they were harmless, yet somehow in my mind’s eye I saw Kevin frowning at this little exercise in comradeship. So much for Kevin……you can’t help but laugh at the scene.
My friends reminded me how tempted I’d been to cut open one of the capsules in the beginning of the trial to see if there was sugar inside. “Now that you know it’s a placebo, see what’s inside,” suggested Tina J, egged on by Tina B.
I opened one of the capsules and poured the white substance onto a restaurant placemat.
We all tasted it as if we were sampling something forbidden. Karen thought it tasted bitter, but I thought it tasted like flour.
Next the film crew wanted to film me following Kevin’s instructions to dump the pills down the toilet. We’d forgotten to film this back at my apartment.
The ladies room was too small for all of us, so we went to the men’s room. These poor men would come wanting to go to the bathroom, and we’d all have to pile out to let them go, and then pile back in again. I can’t help but wonder what the restaurant thought we were up to in there!
Joel filmed me pouring the pills into the toilet, and then he stuck the camera right down in the toilet bowl and filmed the capsules circling the toilet as I flushed.
Somehow it seemed like a symbolic ending.
Since then I’ve been asked a lot whether I’m angry that I was on a placebo all this time – after all – I did pay a high price to be in this trial. I changed life plans to be able to stay in the United States and participate in research. Missing work certainly was one (although one of several) death nails in my career.
The answer is no, I’m not angry. I knew going in there was a chance I’d be on placebo. I feel lucky that despite being on placebo, I’m doing as well as I am. Someone had to be on a placebo.
I also feel that if the trial was flawed in such a way that it would have not generated the answer we needed, than it’s better that it ended now and that research now focuses on something else. Otherwise, I really would have spent another three years on placebo for nothing.
Comments
Anonymous, yes, I really, really do feel this way. In fact, I'm honored to have played a role, albeit a small one, in our journey to a treatment, and someday a cure.