As difficult as the news is about our drug trial, there are many things to feel good and grateful about. I don’t mean to minimize anyone’s grief – I’ve had the luxury of some time to process this. We all handle grief differently. I, personally, need a little space before someone starts telling me the upside of what is obviously a down event. Others want to hear the upside immediately because they cope by focusing on that. Read what you need when you need to read it.
I’m not just being a spin doctor or a Pollyanna when I say there is, in fact, something positive coming out of something that is making us all, understandably, very sad.
The first thing we have to be grateful for is the trial did NOT prove the drug doesn’t work. It didn’t close because the drug was found to be useless – only because the trial as written wouldn’t prove that the drug does work. I’d rather have something out there showing some promise, even if we’ll have to change our strategy to get it someday.
We can be grateful that the study proved further that the drug is safe. It was well tolerated.
Dr. Gahl’s team will be further analyzing the data in hopes of publishing some of their findings – even though the outcome wasn’t what we’d hoped for. The NIH will be asking those that want to know if they were on the drug, and who indeed were on active drug, to return to the NIH for a lung lavage. They want to find out if there’s any real difference in the BAL fluid of those that were on active drug. That might yield findings that could further help us know what direction to move in next.
It’s a little hard to be upset that the NIH learned that those of us in the earlier stages of lung disease don’t get worse as fast as they’d thought. It’s hard to know at this point why that is, but the great care we got while at the NIH couldn’t have hurt. It should serve as further motivation to keep those doctor appointments and do everything you can to stay healthy. It really can help.
Dr. Gahl and the NIH aren’t giving up on us. They do plan to continue to look more closely at the basic genetic defect. Who knows – maybe that work will yield something better, and it would have been delayed if the trial would have continued.
I know that not everyone looks at this from a spiritual perspective, but for me, it helps. We have had so many little miracles along our path, so many angels that have come to our rescue along the way that I can’t help but think God has something in mind for us. Perhaps this is his way of getting us ready for it.
Finally, if the trial was never going to prove what we needed, better that it stops now. Those who might have been getting sicker might have held out longer to seek other options like a lung transplant had the trial continued. It’s better to move on to the next thing and to know that we need to do that sooner, rather than later.
I know this news isn’t easy, but I hope these little points of silver lining do help. We aren’t giving up. The search for better treatments and someday, a cure, will continue.