The One Where The Diabetes Community Crashed The FDA

Unfortunate? Ironic? Awesome? All of the above?

Unfortunate? Ironic? Awesome? All of the above?

I think the biggest sign that you’re on the right track in engaging a community in a collaborative discussion is when that community shows up in numbers so overwhelming, your livestream crashes and (apparently) cripples the entire FDA network.

Or as Jenny McCue of HCMStrategies put it,

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.

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Your Diabetes Advocacy May Vary

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.

Also, your diabetes (advocacy) may vary.

To that end, please read Dayle’s post about her perspective on Diabetes Awareness Month. It’s pretty great.

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Hashtag Vote4DM

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.

StripSafely has a full walkthrough on how to participate in the #Vote4DM campaign. Once you’re logged into Twitter, you can send all of the pre-formatted tweets that they have carefully crafted. There’s a lot to parse on the page, but it will essentially boil down to clicking a link, and then sending the tweet. The entire process, informing leadership and representatives in your Congressional district about each of the bills, will take 2 minutes. That’s it.

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Fill Out This Survey to Tell The FDA What Matters To You

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.

To that end, here’s your next opportunity to speak up. You can go to diatribe.org/survey and help inform the FDA on what matters most to youContinue reading

About Medicine X 2014 – Day 3

We made it to the last day of tweets. Here’s the Storify post of my comments along with some shots from the official Medicine X Flickr account. As usual, some of my favorite moments are highlighted below.

Go Kim, Go!  Continue reading

About Medicine X 2014 – Day 2

The Storification of tweets continues as I recap Day 2 of Stanford Medicine X. After the rush of hosting the opening panel the day before, I figured the rest of the weekend would be a walk in the park. Here are some of the stand-out moments from the day, as told by my ability to be clever in the span of 140 characters.

(And you should too)

We still have a ways to go before being the “token patient” at a conference is a thing of the past.

That, right there, is my most important tweet of the day. Maybe even the entire conference.

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Just Talking About Medicine X 2014

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!

For more information about Medicine X, visit medicinex.stanford.edu.

Special thanks to everyone who called in:

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