#710 Joanne Milo Wants Her Data

Juicebox Podcast: Type 1 Diabetes

Scott Benner

Nutrition, Medicine, Health & Fitness

4.8 • 1.7K Ratings

🗓️ 30 June 2022

⏱️ 37 minutes

🔗️ Recording | iTunes | RSS

🧾️ Download transcript

Summary

Comment submissions are closed next Thursday (July 7th) so DO NOT WAIT to show your support.

Instructions:

Tap on link: tinyurl.com/ct6n22ft
Fill in the comment box with your message
Select Option: Device Industry C0012
Enter your email
Tell about yourself: choose either Individual or Anonymous
Check the box that you have read/understood
Tap the GREEN Submit button
THAT'S IT! All in under 2 minutes!

Do you like continuous access to your CGM BG data so that your DIY Loop WORKS?! Do you know that we might lose that access with Dexcom G7 and Abbott Libre3 has never allowed access?

I NEED YOU TO ACT ... IT MATTERS!

Please join me in a letter-writing campaign to fill their inbox with our comments and concerns! NOW!

Suggested text:

"I live with insulin-requiring diabetes, an incurable chronic disease requiring continuous monitoring of blood glucose values and administration of insulin. It is imperative that access to my own devices remains possible. The ability to receive glucose values from my continuous glucose monitor and the ability to command my insulin pump to deliver insulin are already permitted and expected of me. In fact, if I don't do these, I will die. So please do not let medical device manufacturers use cybersecurity as a pretense to prevent me from accessing my own devices."

When you put your name (or even if you post anonymously) consider including 'pwd' or 't1d' or however you identify yourself as someone with diabetes, I.e. 'Sally Smith, T1D' so that they know our community has a voice

You can see the comments that have already been submitted and approved: https://www.regulations.gov/docket/FDA-2021-D-1158/comments

Transcript

Click on a timestamp to play from that location

0:00.0	Hey everybody, this is Scott and this is episode 710 of the Juice Box Podcast.
0:07.3	This episode was not planned so I'm squeezing it in on a day where you don't usually get
0:12.4	an episode.
0:13.8	What you're about to hear is a quick little 30 minute conversation with a lady named
0:17.4	Joanne Milo.
0:19.1	Now you may know Joanne and you may not.
0:21.6	But Joanne founded the Facebook group called Lupin Learn as well as being a long time
0:26.7	type one and a long time type one advocate.
0:30.2	Joanne is here to talk about a notice that's been posted by the FDA and it is open right
0:35.4	now for public commenting.
0:37.3	Actually it's open until the 7th of July 2022 at 11.59 pm Eastern Daylight Time.
0:45.2	That's the last chance you have to make your voice heard.
0:50.6	In short, this is about removing CGMs from this document so that people living with diabetes
0:58.7	don't lose access to their data.
1:01.0	Joanne's going to spend a little bit of time explaining why she thinks this is so important.
1:05.2	I'm going to tell you at the outset that I believe it's very important that I'm adding
1:09.0	my name to the document and giving my reasons.
1:12.3	If after listening to this quick conversation you still need help putting into words why
1:17.0	it's important for you, Joanne has written a sample letter that will be in the show notes
1:21.8	of your podcast player and at juiceboxpodcast.com but I'm quite certain that after the conversation
1:27.9	you'll be able to form your own thoughts and opinions.
1:30.9	If you'd like to share those opinions with the FDA there's also a link in the show notes,
	...

Please login to see the full transcript.

Previous episode | Next episode

Disclaimer: The podcast and artwork embedded on this page are from Scott Benner, and are the property of its owner and not affiliated with or endorsed by Tapesearch.

Generated transcripts are the property of Scott Benner and are distributed freely under the Fair Use doctrine. Transcripts generated by Tapesearch are not guaranteed to be accurate.