It’s lunch time, and I should be working through lunch. But I can’t concentrate very well anyway. I can’t stop thinking about the drug trial. As we’ve done outreach for this trial, several people have declined the opportunity to participate, and several others have been turned down for various reasons.
A decision like this isn’t a small one. For starters, it’s a huge responsibility and a huge time commitment. Once admitted, failure to stay in the trial and show up for the appointments at NIH would mean that the data would have to reflect you as dead (even if you just dropped out). Thus, if anyone gets into the trial, and then doesn’t comply, it hurts everyone with HPS hoping for this treatment. You’ve really got to be willing to sacrifice for the greater good of everyone with HPS. Second, no one knows what the long term effects of this drug might be. I know several HPS patients in the earlier studies who are doing quite well, but it’s still experimental and thus some of the risks are by definition unknown.
Even so, I keep thinking about the people who turned down the trial and wondering why? I don’t want to come across as judgmental about it, as I’m sure they have their reasons and since dropping out would hurt the rest of us so much – I, for one, don’t want anyone in the trial that isn’t motivated. But I can’t help but keep wondering, why?
If I get to NIH in four weeks and am exempted for some reason, I’ll be distraught. I’m not thrilled about the idea of being in the trial, to be honest, because the personal price is high. I’ll have to use my vacation time to go – so no holidays for the next three yeas at least. I’ll likely have to cut down my travels to medical meetings, which I actually enjoy as a weird sort of therapy.
But, it’s a chance. I am so thankful to at least have a chance. How could anyone with a fatal disorder turn down a chance? So what if this drug causes cancer in 30 years. Without the chance, odds are I’ll be lucky to see 40. A chance adds an element of uncertainty to the future. I used to be the sort of person that wanted to know everything, and I guess I still am, but I’m learning that an element of the unknown isn’t always so bad. It makes optimism feel grounded in something besides desperation or ignorance. It makes it seem to have real feasibility.
A decision like this isn’t a small one. For starters, it’s a huge responsibility and a huge time commitment. Once admitted, failure to stay in the trial and show up for the appointments at NIH would mean that the data would have to reflect you as dead (even if you just dropped out). Thus, if anyone gets into the trial, and then doesn’t comply, it hurts everyone with HPS hoping for this treatment. You’ve really got to be willing to sacrifice for the greater good of everyone with HPS. Second, no one knows what the long term effects of this drug might be. I know several HPS patients in the earlier studies who are doing quite well, but it’s still experimental and thus some of the risks are by definition unknown.
Even so, I keep thinking about the people who turned down the trial and wondering why? I don’t want to come across as judgmental about it, as I’m sure they have their reasons and since dropping out would hurt the rest of us so much – I, for one, don’t want anyone in the trial that isn’t motivated. But I can’t help but keep wondering, why?
If I get to NIH in four weeks and am exempted for some reason, I’ll be distraught. I’m not thrilled about the idea of being in the trial, to be honest, because the personal price is high. I’ll have to use my vacation time to go – so no holidays for the next three yeas at least. I’ll likely have to cut down my travels to medical meetings, which I actually enjoy as a weird sort of therapy.
But, it’s a chance. I am so thankful to at least have a chance. How could anyone with a fatal disorder turn down a chance? So what if this drug causes cancer in 30 years. Without the chance, odds are I’ll be lucky to see 40. A chance adds an element of uncertainty to the future. I used to be the sort of person that wanted to know everything, and I guess I still am, but I’m learning that an element of the unknown isn’t always so bad. It makes optimism feel grounded in something besides desperation or ignorance. It makes it seem to have real feasibility.
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