We hear the heartbreaking stories way too often of kids and adults who aren’t aware of the symptoms of type 1 diabetes, and it ends up being too late when the realization finally hits. That’s what happened in 2013 in North Carolina, when a 14-month-old girl named Reegan died as a result of her diabetes going undetected.
Now two years later, that little girl’s death is serving as a catalyst for change. North Carolina is poised to become the first state to pass a law encouraging doctors to tell parents about the warning signs of type 1 diabetes during regular office wellness visits. If passed and signed into law, “Reegan’s Rule” would take effect Oct. 1 and could very well help prevent undiagnosed diabetes by raising awareness early on.
What’s also remarkable is how none of this would be possible without the Diabetes Community, and particularly some key advocacy from New York-based D-Dad Tom Karlya, who helped create this legislation and get it to this point.
A little more than a year ago in 2014, we reported on how Tom set out on a mission to raise awareness through a campaign called “A Cry for Change.” Tom has two adult kids of his own with T1D, and he was tired of hearing how the condition wasn’t recognized by the public or even the general medical community and, sadly, often led to cases of DKA (diabetes ketoacidosis) and even death. So he created this patient-led initiative to not only raise the bar on recognition of T1 symptoms among the general public, but also to push for family doctors to screen for T1D with a simple glucose test if and when any classic “flu-like” D-symptoms are seen.
Tom put out a call on his blog, Diabetes Dad, He received dozens of responses, including a story from one mom in North Carolina who’s 14-month-old daughter, Reegan Oxendine, died in September 2013 after she became deathly ill. Even though she’d been taken to the doctor’s office many times, Reegan was misdiagnosed by her doctor with acid reflux, and she died as a result.
That story was passed on to the state lawmakers, and State Rep. Charles Graham took up the call to action, introducing House Bill 20 (also known as Reegan’s Rule) focused on Childhood Diabetes Education.
The bill was sent to a committee where most bills “go to die,” but Graham called out for the Diabetes Community to raise its voice and tell committee members why this legislation is so important. Tom wrote another blog post on April 27, and within two days the committee approved the legislation and so did the House, with a 111-6 vote.
And apparently, via Tom’s efforts, the legislators took notice of how many in the D-Community responded and were moved to expand the proposed law to mandate that yearly checks for diabetes during wellness exams happen all the way up until a child is 5 years old!
“What is happening in North Carolina could just be the tip of the iceberg,” Tom tells us. “It is difficult to say to medical practices, ‘You must’ do something’… That said, we can surely encourage them to try harder in recognizing the warning signs and sharing with parents what to do when their child is being looked at by a medical professional.”
Aside from this legislative push, Tom says he’s also been working with the National Association of School Nurses to better help school nurses understand when a child comes into their office with flu/virus like symptoms that it could be something more. The group has added a resource on its website for school nurses to download, outlining warning signs that can be shared with parents.
Curious about whether anything like this has been done in other states, we reached out to both the JDRF and American Diabetes Association. Surprisingly, the JDRF says it hasn’t been engaged in this area so it wasn’t able to say, but the ADA confirms that this effort could very well be the first of its kind.
“The Association is unaware of any states that have enacted legislation requiring health care providers to notify parents about the warning signs of diabetes,” said ADA spokeswoman Anna Baker. “The Association did adopt a support position on this North Carolina House Bill 20/Senate Bill 27.”
After this legislation got support from the state Senate, Reegan’s Rule became law later in 2015. And it’s been great to see other states following in North Carolina’s footsteps with similar or related legislation and enacted laws, too! Also, for more in-depth coverage on how Reegan’s Rule actually became a law and the family’s aftermatch in dealing with Regean’s death, please check out this multi-media “Previously Healthy” story by the Beyond Type 1 team.
We never want to hear about these horrible instances of DKA and death, and have to see those commemorative blue candles in our community, knowing that means tragedy. So hopefully, with Reegan’s Rule, we can help create preventative change — and ultimately get other states to sign on in the push to raise public and medical community awareness.
A huge thank you to advocate Tom Karlya for raising his voice so effectively!