Thanks to everyone who has sent well wishes my direction. As always, I’m in a post NIH funk. This happens every time I go to NIH and I’ve talked to others that have had the same experience.
Being at NIH can be stressful. They are so thorough in their exams that you never know what they’re going to find. You never know what kind of news you’re going to get, so most of the time you’re on edge about what news the trip may bring. At the same time, I feel very safe at NIH. It’s the one place on Earth where I have confidence that they know what they’re doing in regard to Hermansky-Pudlak Syndrome. It’s also one of the few places I go where everyone understands what I’m dealing with, and I don’t have to explain anything to anyone. Everything I say is taken seriously and investigated. It’s such a supportive environment, but then it’s time to leave and you have to return home with everything you learned and take it back to the real world where even the best intentioned people seldom really understand.
I’ve had some well wishes that I do very much appreciate via e-mail. Everyone keeps saying, however, that they’re praying that I’m on the real drug and not the placebo. I feel a little funny about that. It doesn’t seem like the right thing to be praying for because if I’m on the real drug, than someone else is on the placebo.
Instead, my hope is that the recruitment for the drug trial will pick up (I’m only patient 10 in a year’s time and we need a minimum of 40). We have to follow a total of 40 patients for three years before the trial is over and the process for getting FDA approval can begin. In the meantime there are many people who need a treatment, but are not able to get into the trial because of other health problems. The longer it takes, the longer it will be before they will have access to this drug.
Yes, I’m thrilled to get into the trial, but the bigger picture is more important. Whether I’m getting a placebo or not pales in comparison to whether everyone that needs this treatment (assuming it proves to be as successful as it was in the first trials) is able to get it.
Being at NIH can be stressful. They are so thorough in their exams that you never know what they’re going to find. You never know what kind of news you’re going to get, so most of the time you’re on edge about what news the trip may bring. At the same time, I feel very safe at NIH. It’s the one place on Earth where I have confidence that they know what they’re doing in regard to Hermansky-Pudlak Syndrome. It’s also one of the few places I go where everyone understands what I’m dealing with, and I don’t have to explain anything to anyone. Everything I say is taken seriously and investigated. It’s such a supportive environment, but then it’s time to leave and you have to return home with everything you learned and take it back to the real world where even the best intentioned people seldom really understand.
I’ve had some well wishes that I do very much appreciate via e-mail. Everyone keeps saying, however, that they’re praying that I’m on the real drug and not the placebo. I feel a little funny about that. It doesn’t seem like the right thing to be praying for because if I’m on the real drug, than someone else is on the placebo.
Instead, my hope is that the recruitment for the drug trial will pick up (I’m only patient 10 in a year’s time and we need a minimum of 40). We have to follow a total of 40 patients for three years before the trial is over and the process for getting FDA approval can begin. In the meantime there are many people who need a treatment, but are not able to get into the trial because of other health problems. The longer it takes, the longer it will be before they will have access to this drug.
Yes, I’m thrilled to get into the trial, but the bigger picture is more important. Whether I’m getting a placebo or not pales in comparison to whether everyone that needs this treatment (assuming it proves to be as successful as it was in the first trials) is able to get it.
Comments