We have been asked to help spread the word about an upcoming FDA meeting. The topic of this meeting is on Outcomes Beyond A1C and moving toward a consensus on hypoglycemia. The goal is to show the FDA the significance of hypoglycemia.
This can’t be done without including the voice of our community. Our voices were an integral part of the patient voice last summer, so are inviting us to participate once again.
If you or someone you know has ever experienced a low blood sugar, we were hoping you could film a 15 to 20 seconds clip stating your name, how long you or your loved one has had diabetes and answering the following questions:
· What does a low blood sugar feel like?
· What is it like to be low? or What is it like to care for someone who is low?
They are also collecting patient’s experience with A1c. So either in the same video or a separate clip we were hoping patients could answer
· Do you care about A1c? Why or Why not?
· What else should we look at other than A1C?
These video clips will be compiled into one longer video. Videos can be returned to this email, firstname.lastname@example.org by July 7th.
Our voices are strong!
I am honestly confused as to why the FDA would not already be aware of this.
I must be misunderstanding something here.
I agree this is a little scary. These are the same people approving our diabetes treatments. This shouldn’t be a new skillset. YIKES!!
I am sure you are not misunderstanding. The FDA knows all this stuff already. But like any government agency, they have money to waste on stuff that doesn’t actually solve the problem. Just public relations stuff.
They did the exact same thing last year. It is a way of the FDA saying, “Look at us, we care!”
Anyway, on a side-note, hey Thomas! Catch ya later!
I would reply to a survey, but have no interest in doing a video.
I would be happy to give a written statement or take a survey. I will not do a video.
I appreciate the tactic of gathering “real people stories”. I feel like it goes along with another thread where we are talking about non diabetics not “getting it” because they’ve never been there first hand. They have the science, but we all know that we are so much more than our diagnosis or a text book or peer reviewed study. They want us to try to help them get it, even if only a little bit. There’s a reason my quarterlies always take close to an hour–because it’s about more than the blood tests. They want the non-quantifiable stuff. Feel good PR? Maybe, but it’s also exactly what many of us wish our own family would ask us.
I agree with those saying they would give a written statement or take a survey. I have no interest in making a video.