We spoke with Tom Linn an attorney in Colorado who was diagnosed with T1D at age 69, 3 years ago.
This is his story.
“My symptoms were classic yet I was first diagnosed as Type 2. My blood glucose never lowered and after 10 days with no improvement, my primary care doctor gave me a pile of syringes and a vial of Humalog and sent me home with few instructions.
I quickly realized my primary care doctor was not very knowledgeable of T1D and despite the often-disliked Medicare insurance I had, I was fortunate to find an endocrinologist who had studied at the world-renowned T1D Barbara Davis Center in Denver. She got the diagnosis right and introduced me to insulin pens, then a pump and then a CGM and, importantly, how to live with T1D. Each of these steps, taken over several months were game-changers enabling lower A1c, fewer blood glucose excursions and, overall, resulting in a better life for me and those around me
As noted, I am on Medicare and I had to fight to get an OmniPod pump. I wanted the Omnipod because I have an active outdoor life hiking, skiing, fishing, and scuba diving. Its waterproof feature is terrific.
The OmniPod was clearly authorized under Medicare Part D but CMS would not approve my request. I paid for the Omnipod on my own for 18 months until it was finally supplied under Part D [the Medicare drug benefit].
I am now in the same fight all over again with CMS to upgrade to a Dexcom G6 which is much easier to attach and is clearly a better CGM compared to my G5 provided under Medicare.
Those who want “Medicare for All” are, at best, ill-informed.
I am soon to experience yet another game-changer. With the help of other users, I will build a RileyLink (website) to create my own artificial pancreas. I saw a demonstration at a conference recently so I am confident that I will soon, once again, improve my life with the use of a device that can predict and intercept the inevitable excursions that happen with this disease. This will be a giant leap which will hopefully reduce the occurrence of potentially life-threatening events.
I believe my contraction of Type 1 Diabetes has something to do with herpes simplex 1, the virus responsible for cold sores. The reason for my conclusion is that before I got sick with T1D, I would have 4 or more cold sore outbreaks each year in the same place, of the same or similar duration and with consistent symptoms. Since getting sick I have had no outbreaks.”