Episode 24: Afrezza User

If every there was a rock star diabetes drug, Afrezza is it.

In this episode Corinna Cornejo speaks with Emily Coles about how the inhalable insulin Afrezza has captured the imagination of the diabetes patient community and its impact on the diabetes treatment landscape.

We also share highlights from a live interview with Sam Finta, aka AfrezzaUser. Sam spent years being as careful as possible and feeling like “giving up” on his diabetes. Severe depression and anxiety inspired him to seek better means of diabetes treatment. He was fortunate to obtain one of the last openings in MannKind’s Afrezza drug trial in Atlanta through Dr. Bruce Bode of the Atlanta Diabetes Center. Since then, Sam has provided honest, genuine, and truthful information about his experiences with Afrezza via social media ( on Yahoo message Boards, blogspots and others) .

You can find the complete interview with Sam Finta in our archives.

Everybody Talks Diabetes Podcast Corinna Cornejo


Episode 23: D.I.Y. Pancreas System

Dana Lewis is one of the creators of the DIY Pancreas System, or DIYPS.

In this episode Corinna Cornejo and Mila Ferrer talk about the promise and perils DYIPS represents.

Diagnosed at age 14 with type 1, Dana Lewis had the usual experience of years of frustration of dealing with diabetes devices that did not communicate with each other. She often imagined a system that would take data from each device, run it through the algorithm that every person with diabetes uses in their head dozens (or hundreds) of times a day, and automate some of the decision-making process. In late 2013, this became a reality after someone shared their code to help pull data off of a CGM in real-time. Dana and her now-husband Scott Leibrand used the CGM data to create a decision-assist system they called #DIYPS, the “Do-It-Yourself Pancreas System”.

We share highlights from Emily Cole’s interview with Dana Lewis in this podcast. You can find the complete interview in the TuDiabetes archives..

 

Everybody Talks Diabetes Podcast Corinna Cornejo

TuDiabetes Interview with Krista Maier @AmDiabetesAssn about proposed Nutrition Fact Label @US_FDA

http://www.youtube.com/watch?v=PJfVZjMXwgQ

Krista Maier is the Associate Director of Public Policy for the American Diabetes Association. Her primary areas of focus include state and federal policies related to Medicaid, primary prevention of type 2 diabetes and Affordable Care Act implementation. Krista earned her Juris Doctor degree from American University Washington College of Law in Washington, D.C., and her bachelor’s degree in Speech Communication from Miami University in Oxford, Ohio.

Topic Description

On March 2, 2014, the Food and Drug Administration (FDA) released two proposals to update the Nutrition Facts label found on most food packages in the United States. Since a healthful eating pattern is a key component of diabetes management and prevention, accurate and easily understandable food labels are essential in ensuring individuals with and at risk for diabetes are able to follow their individualized eating plans and achieve their daily nutrition goals.

Krista will provide an overview of the changes being proposed by the FDA, focusing on those that may have the greatest impact on individuals with and at risk for diabetes. In addition, in this interview she will let consumers know how they can make their voices heard and tell the FDA what they like about the proposed changes—or how they can be improved. Comments are due to the FDA by Aug. 1, 2014.

Category: Nonprofits & Activism
Uploaded by: Diabetes Hands Foundation
Hosted: youtube


Diabetes Advocates #MasterLab 2014 – Stayce Beck @US_FDA, Regulatory interest in public participation

http://www.youtube.com/watch?v=LAuKFxD66Z4

http://diabetesadvocates.org/masterlab/
Regulatory interest in public participation by Stayce Beck from the Food & Drug Administration (FDA).

The Diabetes Advocates MasterLab took place on July 2, 2014 in Orlando, Florida as part of the Children With Diabetes Friends For Life Conference.

The Diabetes Advocates MasterLab is about building a sense of what is possible. It’s a chance to learn from veteran advocates for other health issues. The MasterLab is about creating a formula for successful diabetes advocacy in the future.

Category: Nonprofits & Activism
Uploaded by: Diabetes Hands Foundation
Hosted: youtube


TuDiabetes Live Interview with Bennet Dunlap: D-Advocacy and the FDA

http://www.youtube.com/watch?v=Q012KU5WIPg

In early January 2014, the US Food and Drug Administration came out with new draft guidance for blood glucose meter performance and their accompanying meters. An FDA guidance document, when finalized, is a summary of the FDA’s current thinking on what information the FDA will look for when deciding whether to give clearance to a manufacturer for its meters and strips. Bennet Dunlap has been advocating passionately for tighter controls on glucose meter accuracy through the website StripSafely.com, and has become a guru of advocacy at the FDA.

Join us to learn from the master himself how we, as people with diabetes, can advocate for our own health and safety with the US organization that regulates the medications and technologies we need to live. It’s important! Come get involved.

Category: Nonprofits & Activism
Uploaded by: Diabetes Hands Foundation
Hosted: youtube


TuDiabetes Live Interview with Bennet Dunlap about Strip Safely

http://www.youtube.com/watch?v=sE3pGE3AX80

Bennet is a parent of two type 1 diabetic teens and he has pre-type 2 diabetes himself. Initially he had much to learn as managing chronic disease can be difficult and isolating. As time went on he found that good communication leads to better physical and emotional care. The process of moving from scared parent of a chronically ill child to advocate has provided him with knowledge he shares. Today, he blogs about Type 1 diabetes. He writes about raising children to grow to independently manage their diabetes and he works with other advocates to influence the legal and regulatory framework that constrains diabetes care. He was an amateur in health communications. He recently obtained a masters degree in health communications to help a wider population of people living with diabetes as a professional.

In 2012, Bennet developed Drinking With Diabetes, a resource for young adults with Type 1 Diabetes (and members of their support networks!) interested in learning how to drink responsibly:
http://www.drinkingwithdiabetes.com/

His latest endeavor is StripSafely (http://StripSafely.com), an advocacy initiative that you have been exposed to through TuDiabetes and other diabetes social media. We are honored to have Bennet join us today to tell us more about this important initiative, where it’s at and where it’s going.

4 ways to engage with StripSafely (do all of them):
1) Via Twitter: http://www.stripsafely.com/the-twitter-page/
2) Via letter: http://www.stripsafely.com/sample-page/
3) Participating in the Strip Safely edition of Diabetes Art Day: http://www.diabetesartday.com/diabetes-art-day-2013/special-edition-strip-safely/
4) Completing and sharing this petition:
http://diatribe.org/petition

Category: Nonprofits & Activism
Uploaded by: Diabetes Hands Foundation
Hosted: youtube