“I imagine being diagnosed as an adult would be harder because you remember life without it.”
“Yeah.” I nodded at the woman to my left, mother to an 11-year-old with Type 1 diabetes (T1D).
We were both first-timers to the JDRF TypeOneNational 2015 DC Research Summit yesterday. While many parents of children with diabetes attended the day-long event, I was among some of the adults who had been managing this disease for years.
I’m about to celebrate my sixth anniversary with this disease, one year closer to a decade. It’s hard to believe I’ve been managing the disease this long – it’s even harder to believe that I have many years to go. But like speaker Tom Brobson, national director of research investment opportunities at JDRF, reminded us, if we had all been diagnosed one hundred years ago, we wouldn’t have survived a month.
I’d like to believe on the starvation diet I would have lasted a little longer, but he was right about one thing – we’ve come a long way technology-wise. And for that I am thankful. William Tamborlane, chief of pediatric endocrinology at Yale University and deputy director of the Yale Center for Clinical Investigation, familiarized us with the “blue brick,” the first insulin pump device introduced in 1979. It would take another 20 years before the insulin pump would actually take off.
And Jessica Roth, senior director of health policy at JDRF, reminded us of the importance of advocacy. It’s not enough to have all these research advances such as ViaCyte, Smart Insulin, and the artificial pancreas without the ability for people living with this disease to have access to these treatments. It still pains me that Medicare refuses to cover the continuous glucose monitoring (CGM) system for those over 65.
But it’s not enough to have access to treatment and management devices. We still have to live with the disease and that takes emotional strength as well. Diane Herbert, clinical manager at Fit4D, whose son was diagnosed with T1D at age five, gave us some strategies for coping with the disease.
Even though more geared towards children growing up with diabetes, I also like to thank I’ve taken measures to make light of diabetes’ impact on my life. Just as Herbert referred to her son’s lancet device as the “clicker,” as a way to put a more positive spin on the disease, I call my insulin pump Gizmo and my CGM Cosmo.
As Brobson mentioned at the conclusion of the summit, we’re really good at making management of this disease look easy; we’re good at making it invisible, but it’s actually brutally hard, and every day we must react to the constant dynamic of this disease. Just this past week, I’ve been trying to get a new prescription for my CGM sensors because my old one expired, and my insurance company refuses to cover them until it’s renewed.
But I can’t meet with my new endocrinologist until May, and my former endocrinologist is on maternity leave so I’m trying to get a hold of another doctor, and I’m on my third week of my last sensor. It’s a neverending battle, and there are times when the frustration is overwhelming and exhausting, and you feel like you’re repeating the six stages of grief all over again.
That is one important point Herbert made, that we will continue to have diabetes firsts, that the emotional struggle with this disease will never truly be over, but we can take steps to endure it in the hopes that in the next 10 years, we will be that much closer to a cure.
The Possibility of a Cure
JDRF’s mission is to turn Type 1 into type none. Up until this research summit, I had doubts I would ever see a cure in my lifetime. I didn’t want to get my hopes up. But after seeing the many research advances happening in the field and the support we’re receiving from organizations like JDRF, I believe in 10 years when I celebrate my 16th anniversary with this disease, we may be in a different place.
In fact, besides the occassional health insurance hang-ups, which I believe will never go away, I may hardly notice its existence. Maybe I will have an artificial pancreas? Maybe I will be on the path towards replacement cell therapy? Maybe I will have insulin that reacts to my glucose levels without manual interpretation? There are more possibilities than I imagined.
I still don’t want to get my hopes up. I don’t know where this disease came from, and with that, I am not alone. But I am comforted by the fact that in the conference room yesterday there were people who had been living with this disease for 40+ years. If they can manage and thrive, then so can I.