Thinking of everyone today. I’m sure you are all stressed. Thank you for all you do.
This was the text message I woke up to the morning after the announcement that Roche instructed the investigators of GENERATION-HD to stop dosing. I can summarize the mood in our group as frustrated, upset, and weary. We called all our patients that morning, and the mood on the other side of the phone was similar. And yet, I also heard comments that reflect the incredible resilience of our patients and families. “This is a setback, but thank you for continuing to work on finding a cure.” “I was so hopeful, but I’m glad we found out now.” “What are the research options for me now?"
One of the most challenging aspects of running clinical trials is the reality that trials are not treatments. When our site was named as a participating site for GENERATION-HD, the phone rang off the hook. Some families promised to move to Nashville in order to be in the study, others said they would donate money in order to get accepted into the trial. We had to remind participants that this was a trial, not a treatment. You can get a placebo, there is a chance that it won’t work, there is a risk that the therapy would have side effects. Still, patients and clinicians hope for the best, and this recent development weighs heavy on us all.
However, we are not giving up. There are still many reasons for hope. We still have new trials, scientific discoveries, new methods—all of which speak to our communal effort to serve our patients and families that suffer from HD. We are in this together. It’s very important to grieve and to name our disappointment. However, it’s also important to acknowledge that we still have a lot to hope for.
Thank you for letting us walk alongside each of you on this journey, we will not stop working until our hopes come to fruition.