The News:
Everyone this week–from the Wall Street Journal to Fox News to various diabetes journals to our own Jeffrey Brewer, Breakthrough T1D’s CEO–were abuzz about a new study stating that the incidence of type 1 diabetes in the US has risen 23% during a period of eight years.
What This Means for the T1D Community:
This sort of news elicits all kinds of emotion in me.
At first I was surprised. The stat I like to quote is that T1D is growing at 3% per year. It took me a minute to realize that saying the disease has grown 3% annually is roughly the same as saying it has grown 23% over an eight-year period.
I like that 3% statistic because it helps to communicate a sense of urgency. This disease is rough on my kid, sure, but it’s rough on 3 million other americans too. If the number is rising steadily–and most markedly in the toddler population!–then we need to figure out why.
I might like to say “23%”! That might make for more urgency. Twenty-three percent is one of the reasons the SEARCH study got so much attention this week. Twenty-three percent, though, means nothing without a time frame.
Once I got over my surprise, I found the news made me curious. As we know, the incidence of type 1 around the end of the nineteenth century was 1 in 100,000. The new study suggests that in 2009, the number was more like 1 in 500. A rise like this means that genetics alone cannot be to blame.
In these articles, I look forward to hypotheses as to why the rates are rising. Among theories mentioned is the hygiene hypothesis–the idea that our children’s immune systems are not challenged enough by infection and can, in certain cases, turn on themselves. Also posited is the accelerator hypothesis, that “faster growth and weight gain early in life could exacerbate genetic factors and bring on the disease.”
Surprise and curiosity were followed by gratitude. The study–a multi-center one that tracked 20,000 patients under the age of 20 in five states–was funded by the CDC and the NIH. This good work underscores the importance of supporting institutions that are researching not just the incidence of disease, but how we can CURE this bad boy.
Jeffrey Brewer was his usual well-spoken self in stating: “This alarming growth in T1D, if unabated, means the prevalence of the disease would double for every future generation, resulting in massive new health care spending in federal entitlement programs and the private health care market. But even as the T1D rate rises, researchers funded by Breakthrough T1D and other private foundations, coupled with federal initiatives like the Special Diabetes Program, are making remarkable strides across an array of diabetes research frontiers, from treatments to reverse vision loss, to technology like the artificial pancreas, to vaccines, and to new forms of insulin.”
During a year when decisions will be made about the renewal of the federal Special Diabetes Program, this kind of national awareness is particularly important.
Finally, I felt even more complex emotions. The first was a petty, very small feeling I’m not proud of. I felt, suddenly, that it didn’t matter if other people were pulled into this exhausting, confounding, worrisome muddle of a disease, because we were already in it. Something akin to: misery loves company. A thought like: we are immune from the trauma of having T1D newly introduced into our lives because it’s already such a part of who we are so the bad news in this article doesn’t apply to me!
Then I thought of my other two kids. I thought of nieces and nephews and close family friends and I immediately regretted what just went through my head.
Finally, the even more difficult emotion. The dread that formed a pit in my stomach when I read: “The study found that children and adolescents with diabetes have measurable signs of complications including nerve damage that could lead to amputations. It also identified early signs of cardiovascular damage raising risks for future heart disease.”
Of course, this is another way to create a sense of urgency, in myself and in anyone with whom I chose to share this most troubling information.
It’s a reason to organize Will’s data and review his pump settings and carb ratios before the clinic appointment we have this Wednesday.
It’s also, though, what makes me want to navigate away from this article-drafting page and from all the reports of the SEARCH study open on my laptop. Call it 3% or 23%, both make me want to turn, right now, to the fashion and literature and weather blogs on my bookmarks bar, none of which has anything to do with any of this.
If You Want to Read More:
https://www.breakthrought1d.org/index.cfm?page_id=117248
