Editor’s Update: This piece focuses on the launch of the campaign in Pennsylvania. Since publication, the campaign has gone live to over 15,000 pediatric offices in Texas, New Jersey, Delaware, Ohio and Massachusetts. We are actively working to reach other states throughout the US during 2017. For more about our DKA campaign and efforts, check out our All About DKA page.
The first step is admitting that we have a problem; here goes: we have a DKA (diabetic ketoacidosis) problem. When people in the United States are diagnosed with Type 1 diabetes, approximately 40% of them are in DKA, a dangerous and sometimes deadly consequence of diabetes. Four in every ten people are at such a critical state, that their lives are in jeopardy. That means four in every ten T1D cases had the signs and symptoms of T1D misunderstood or ignored. And in a number of these cases, by the time T1D was properly diagnosed, it was too late. No one should ever die because of a missed diagnosis.
From my first days at Beyond Type 1, the problem of DKA has been one that we wanted to solve. Our CEO & Co-Founder’s open letter on the topic in September of 2015 has been shared thousands of times. Our first T1D Warning Signs campaign puts thousands of flyers into schools across the country. These efforts have been good, but at the end of the day, they were the equivalent of dangling our feet in the water. It’s time for Beyond Type 1 to jump in, and we want you to join us.
A few months ago, we began discussions with the Pennsylvania Chapter of the American Academy of Pediatrics (PAAAP) about what an awareness campaign to reach every single pediatrician’s office in the state would look like. We ultimately built a campaign that featured digital newsletter announcements, physical mailings of posters and print collateral, and an online portal with more information and resources. Actor and #PWD Victor Garber recorded audio and video PSAs for offices to use. We sent a co-written and co-signed endorsement letter from PAAAP leadership, parent leaders, leading Pediatric Endocrinologists and Beyond Type 1 leadership. And as of last week, we sent the Pennsylvania campaign out to over 2500 pediatricians in the state.
And we’re not done. Over the course of November 2016, we will launch parallel campaigns in at least 5 more states, reaching well over 10,000 pediatrician’s offices and hundreds of thousands of families. In coming months, we’ll be going nationwide and expanding to new audiences. While the partnership with PAAAP (and other AAP chapters) is a great first step, it is only part of the solution. We have to work with family practitioners, educators, school nurses, coaches, and parents unaffected by T1D to raise awareness. We have to work with members of the diabetes community to amplify this campaign in individual towns and cities.
When I started at Beyond Type 1, I had no immediate connection to Type 1 diabetes. I didn’t know what DKA stood for. I didn’t realize that undiagnosed T1D could lead to such a serious complication. I certainly didn’t understand that the signs and symptoms of T1D (and DKA) were frequently missed. As I have learned more, I have been humbled and saddened to hear story after story from the community about diagnoses experiences. The dollars spent on emergency services, weeks in intensive care, or additional treatment for kidney or brain damage are in the hundreds of millions each year. It’s unacceptable. Every time I hear that someone either came close to death, or has a loved one who has passed away because of DKA, it breaks my heart. This cannot be the standard. DKA is preventable. We know it’s preventable because in some countries the rate of DKA upon diagnosis is as low as 10%; in developing countries we see the rate as high as 80%. You only get that sort of range when there is an awareness gap.
Beyond Type 1 refuses to accept that DKA is a common complication of T1D diagnosis. This is an awareness problem. And awareness problems have solutions. We’re proud to lead the charge to solve this problem in the USA, and hopefully internationally. We’re proud to represent the voices of this community. And we’re proud to put our energy behind such an important cause.
Ways to get involved:
- Want to do something now? Go share a fact card on your social media channels.
- Want to do something in your local community? Sign up to do a school presentation.
- Want to support the campaign? Make a donation here.
- For more information on the campaign, or how to get involved at a statewide level, email us at email@example.com.
Special Thanks: Thank you to Suzanne Yunghans and Dr. Denise Salerno of PAAAP. Thank you to Michelle Berman and Debbie Healy for acting as parent leaders both within Pennsylvania and nationally. Thank you to Tom Karlya for helping us visualize a nationwide campaign that stands out. Thank you to Victor Garber for lending his talents to our audio and video campaign components.
Local Mom Becomes Advocate to Warn of Type 1 Diabetes – PENNSYLVANIA