— Today’s guest post was written by insurance advocate and Carb DM community member Tony Steuer
While we’re still relatively new to the world of Type 1 Diabetes with my son having been diagnosed just over two years ago, the revelation of the relentless work to manage blood sugars is apparent. Type 1 Diabetes has it’s highs and lows – both in the same hour sometimes or so it seems. Already, we wonder what it would be like if we could have one day where Type 1 Diabetes isn’t a factor? Where our middle schooler can just be a regular middle schooler which is tough enough without having to monitor blood sugar, test, treat a low BG, treat a high BG and so on. Or where he can get a good solid night’s sleep without having to test or drink a juice. Our world is filled with what if’s.
Usually with what if’s, they are something you have no control over. However, with Type 1 Diabetes while a lot of the what if’s are out of reach, some of the what if’s have become reality while others have become closer. The reason is that there are organizations that are doing research and coming up with tools and solutions.
Was it so long ago that the Continuous Glucose Monitor became a reality for most people with T1D or the insulin pump? How about being able to use a finger stick to test blood sugar levels rather than the old urine strips which gave historical BG and weren’t particularly helpful?
These are just a few examples of what’s become reality because of research and a main reason why the Special Diabetes Program is so critical to all of us who live in the upside down world of T1D. The Special Diabetes Program (SDP) is a critical program that provides $150 million annually for type 1 diabetes (T1D) research at the National Institutes of Health (NIH), the country’s premier medical research agency.
However, as part of the ongoing budget disagreements in our capital, the SDP program is now expired and therefore is not funded. Without funding, grants will not be administered and research cannot be sustained. New technologies will will not be developed to help overcome T1D.
The SDP has led to significant scientific breakthroughs like new treatments that have improved vision among people with diabetic eye disease (the leading cause of blindness in the United States) and artificial pancreas (AP) technology that will automate blood glucose management.
Renewing the SDP will allow researchers to build on past successes and continue to conduct promising trials that will lead to better treatments, prevention and a cure for T1D. The SDP expired in September 2017; however, Congress has a history of renewing the program well in advance of the expiration date to ensure that large-scale clinical trials can continue without interruption and research dollars are allocated most effectively.
For all of us who are living with T1D, parents or caregivers of someone with T1D; we all want a cure. And while a cure is probably not coming any time soon, any incremental improvement in quality of life is something that we all strive for. As a parent, if I can lighten the burden of T1D for my son, it’s something that I will do. And I’m asking others in the T1D and CarbDM community to make our voices heard and tell Congress that the SDP must be renewed and to vote yes on the proposed Continuing Resolution funding bill. JDRF has created an easy to use tool to do so (click here to access the site).
Tony Steuer, Father to Avery, age 12, Dx T1D in 2016