In today’s 5 minute podcast, I’m calling myself out. I’ve been too damn lazy when it comes to my own health.
The information below was a press release sent out by the American Association of Clinical Endocrinologists (AACE) and the Endocrine Society. I don’t typically share press releases, but insulin affordability is a big concern and all the information about it must be shared everywhere!
AACE and Endocrine Society Partner to Address Insulin Affordability and Access
The American Association of Clinical Endocrinologists (AACE) and the Endocrine Society have teamed up to address the high cost of insulin and the associated burdens placed on the millions of Americans who rely on costly daily insulin injections.
Together AACE and the Endocrine Society introduced a resolution this week at the 2017 Interim Meeting of the AMA House of Delegates that called on the AMA to pursue several initiatives aimed at improving insulin affordability for patients with diabetes. The resolution called on the AMA to convene a summit to identify potential solutions to the dramatic increase in insulin costs and also advocate for initiatives to reduce patient cost-sharing for insulins, stabilize drug formularies throughout a plan year to reduce non-medical switching of insulin products; facilitate greater transparency of insulin pricing and integrate drug formularies into electronic health records.
Overwhelming support for addressing insulin costs and their impact on patients expressed on the floor of the House of Delegates led to a unanimous vote for the AMA to study these issues and provide a report with findings and recommendations to the House of Delegates at the 2018 Annual Meeting in June.
“We are concerned rising insulin prices have created a barrier hindering people with diabetes who are insulin-dependent from obtaining the treatments they need,” said the Endocrine Society’s President-Elect Susan J. Mandel, MD, MPH. “The approved initiatives will engage stakeholders to work together to improve access to lifesaving therapies.”
“This is an important and encouraging step toward addressing the issues affecting insulin costs and the challenges that our patients face in accessing this medication,” said AACE President Jonathan D. Leffert. “AACE is pleased to partner with our friends at the Endocrine Society to help address this issue that is so critical to all of our patients.”
About the Endocrine Society
Endocrinologists are at the core of solving the most pressing health problems of our time, from diabetes and obesity to infertility, bone health, and hormone-related cancers. The Endocrine Society is the world’s oldest and largest organization of scientists devoted to hormone research and physicians who care for people with hormone-related conditions.
The Society has more than 18,000 members, including scientists, physicians, educators, nurses and students in 122 countries. To learn more about the Society and the field of endocrinology, visit our site at www.endocrine.org. Follow us on Twitter at @TheEndoSociety and @EndoMedia.
About the American Association of Clinical Endocrinologists (AACE)
The American Association of Clinical Endocrinologists (AACE) represents more than 7,000 endocrinologists in the United States and abroad. AACE is the largest association of clinical endocrinologists in the world. The majority of AACE members are certified in Diabetes, Endocrinology and Metabolism and concentrate on the treatment of patients with endocrine and metabolic disorders including diabetes, thyroid disorders, osteoporosis, growth hormone deficiency, cholesterol disorders, hypertension and obesity. Visit our site at www.aace.com, or follow us on social media: https://www.facebook.com/TheAACE/, https://twitter.com/TheAACE.
I recently reached out to Tidepool Community Manager, Christopher Snider, and asked a few questions about who Tidepool is and what is on the horizon. Check out the answers below.
1. In a Twitter 140, well now 280, way, tell us who Tidepool is.
(I’ll stick to 140) Tidepool is a nonprofit company focused on delivering great, free software that integrates data from various devices into a single location.
2. Now give us a little more in depth in to what Tidepool is.
2a. When did it start?
Tidepool started in 2013. Next spring will be our 5-year anniversary after receiving articles of incorporation as “Green Dot Diabetes”
2b. Why was it created?
In 2011, Howard Look’s daughter was diagnosed with type 1 diabetes. Soon after his daughter’s diagnosis, he learned that despite the incredible technology that was available to help manage his daughter’s diabetes, getting the information off of those devices to help understand the data behind the diabetes was incredibly frustrating. Software, where available, had various compatibility issues with different operating systems, user experience was not friendly to people with diabetes or their families, and there was no way to see all of the data in one place. Being a software geek, Howard sought to create the solution he felt the diabetes community deserved.
That solution is Tidepool.
Howard’s experience in software development at Pixar, Amazon, and TiVo were a great foundation for understanding what had to happen. Then it was just a matter of building an initial team of advisors, assembling a Board of Directors, securing financial support through donations and grants from groups like JDRF, the Helmsley Charitable Trust, and private donors.
2d. Who created it?
Founders of GreenDot Diabetes in 2012 were: Saleh Adi, Steve McCanne, Jenise Wong and Aaron Neinstein. Howard joined in March 2013. Then, Howard hired the initial team (Sarah, Ian, Ben, Kent, Brandon, Jamie, Jana, Nico) over the course of the rest of 2013. You can see the current team, advisors, and Board of Directors at tidepool.org/team.
2e. Who is Tidepool for?
Tidepool is for anyone interested in seeing diabetes data in a new light. Specifically, Tidepool is free for people living with diabetes and their caregivers to see and learn from their CGM, insulin pump, and meter data. Diabetes clinicians, including endocrinologists, nurse practitioners, CDEs, family physicians, and anyone else who helps their patients manage their diabetes. Separately, we provide data management services to researchers looking to conduct a clinical study that requires data from diabetes devices. Lastly, we are making data that has been anonymously donated by our users to the Tidepool Big Data Donation Project available to groups looking to perform analysis and innovation on a large scale.
3. Can you explain what the Tidepool Big Data Donation Project is?
The Tidepool Big Data Donation Project is an initiative to propel diabetes research and innovation. Tidepool users are offered the opportunity to opt-in to participate, and in doing so, the data they upload is de-identified and placed in a big data “bucket” that we are able to license to interested parties. When you think about the amount of information coming out of a CGM or insulin pump every 5 minutes, then multiply that by, in some cases, years of continuous data. There’s a lot of potential for some really smart people to use that data to answer big questions and iterate upon innovation and opportunity in digital health, pharmaceutical, and academic settings.
We just launched this project a few months ago, so it’s still too early to say what will come of all this data. But transparency is at the core of what we do as an open source project and as new groups sign up to license data sets, we will keep the Tidepool and broader diabetes community informed.
We recently published the first blog post in an ongoing series that will look at insights we can learn from the donated data. The first one looks at CGM data: https://tidepool.org/lets-talk-about-donated-data/
4. How can people sign up?
Anyone looking to start using Tidepool can go to https://tidepool.org/signup to create their free account. Follow the registration instructions, download the Tidepool Uploader (see a list of devices compatible with Tidepool at https://tidepool.org/devices) and you’re on your way to setting your diabetes data free!
5. What’s next for Tidepool?
The funny thing about this question is all of our work is open to the public. Our code is open source , our Design and In Progress Trello Boards detail what we’re working on, but if you’d like to skip to the good parts, in the next 6 months we’ll be working on (in no particular order):
- Adding support for the FreeStyle Libre
- Adding support for Medtronic 6-series pumps
- Updating our Android app
- Working with Dexcom’s Developer APIs
- Adding support for more blood glucose meters
- And a bunch of behind the scenes improvements that hardcore Tidepool users will most certainly appreciate.
While this is all happening, we’re also participating in the FDA’s Digital Health Software Pre-certification Pilot program to help create guidance for future digital health applications. Considering the other names on the FDA’s list of participating organizations, it’s quite exciting.
We’ll be sharing everything we learn with the diabetes community along the way (more about that here: https://tidepool.org/tidepool-fda-pre-cert-program-iteration/).
6. What excites Tidepool in regards to diabetes tech?
Tidepool was born out of the #WeAreNotWaiting movement. Rather than wait for someone else to develop a software solution to integrate diabetes data in an intuitive interface at no cost to the diabetes community, we are leading the charge. Similarly, we’re humbled by the work being done by the Nightscout, OpenAPS, and Loop communities, and can’t wait to see Bigfoot in the wild.
Seeing the JDRF announce their support for open protocols for automated insulin delivery further cements the tremendous impact that’s being done by some highly motivated members of the diabetes community to move this technology and the entire diabetes industry to a new level of potential.
7. Where can people find Tidepool on the interwebs?
tidepool.org is the first place to go for more information and sign up for a free account. We’re quite active across Facebook, Twitter, and Instagram if you’d like to give us a follow.
8. Want to share anything else?
Everything we do is in service of the diabetes community. Most of the Tidepool team is either living with, or caring for someone with type 1 diabetes. As far as the DOC is concerned, your fight is our fight.
If you ever have questions or comments, get in touch!