If you live with diabetes, know someone who does, or even if you’ve seen a movie with someone who has diabetes in it, then you know the disease sneaks up on you. It hits you when you want it the least. Outside of the amazing response our community showed, having the FDA system crash and have to keep going is one of the most persuasive testaments we could have delivered.
It is reasonable to believe Diabetes Awareness is bigger than a diabetes awareness “month”, right? Living this disease day in and day out for over 12 years speaks more than an arbitrary allotment in a calendar. Sometimes speaking with one collective voice makes a difference (like #DOCasksFDA), but individual stories, whenever and wherever they are told are just as impactful.
The fine folks at StripSafely have created #Vote4DM, “a targeted awareness campaign that lets you ask Congress to support three bills related to diabetes already on the Hill.” The bills we’re talking about aim to coordinate federal diabetes policy, provide quality diabetes education and cover CGM for T1Ds over 65.
I recognize the importance of diabetes Advocacy – capital A, for government related stuff. If the types of change we want to see in the lives of people with diabetes is actually going to happen, we need help. Big time. That’s where Congress comes in – they control the purse that funds that major diabetes efforts and legislation.
But, I don’t know the first thing about how to approach interpreting these bills. I don’t know how to effectively communicate the importance of these bills to our elected officials. The skeptic in me doubts one voice can make a difference in all of this, especially if I’m not representing a multi-million dollar special interest group. Part of me is doubtful that a simple hashtag is enough to influence, or inform a potential vote. The cynic in me wonders if anyone in Congress actually pays attention to their Twitter feed, of if that task is outsourced to an intern and their account is just another sounding board instead of serving as a method of communication and interaction with constituents.
But doing nothing is not an option. Surely someone is paying attention to mentions and notifications – there must be a tipping point that will compel an elected official to at least become informed on what these Twitter avatars are talking about. Again, doing nothing is not an option. If we’re going to make a difference, we have to try.
Last night I was chatting with someone after class at Stanford (excuse me while I pick that name up off the floor) about my perception of the FDA and realized we’ve come a long way. In particular, I recalled seeing Bennett Dunlap literally sitting at the table with the FDA, talking about the accuracy of our blood glucose meters. I can’t speak for other disease communities, but seeing one of “us” there with one of “them” is something I never would have anticipated five years ago.
An organization like the FDA has to move slow. The health of the country is in their hands. When it comes to reviews, recalls, reports, and other ‘r’ words, they have to take their time to ensure they’ve done their due diligence to get things right. That approach is what makes the conversation Bennett had all the more important. An entity as massive as the FDA doesn’t pivot in an instant. They don’t turn on a dime. Change is a slow, gradual process over there. That’s why it’s important for us to applaud, encourage, and continue to support efforts that recognize and include patient communities in their processes.
Every time they look to “us”, the patient community, we have to be ready to support the mere fact that they are including us in the conversation. Feedback on open dockets, like blood glucose meter accuracy offer an excellent opportunity to say “thank you for giving us an opportunity to share what we think, let’s do this again, as often as possible.”, or something like that.
My point is, when the FDA looks to the patient community for feedback, we have to speak up. We have to speak up not only for ourselves, our loved ones, and each other – we have to speak up for other disease communities who deserve a chance to be part of the discussion. We have to speak up to reinforce that this type of action is most welcome, and should be pursued as often as possible.
I attended Stanford Medicine X this weekend, a conference billed as the intersection of medicine and emerging technologies. Because the conference took up so much of my time, I didn’t have an opportunity to record a traditional podcast. Instead, I asked ePatient scholars to leave a brief comment on their experience. With a little editing magic, here you go. Enjoy!