I was contacted recently by a science journalist who was doing a story on new research that is being funded to study the incidence of type 1 diabetes as a side effect of checkpoint inhibitors (immunotherapy drugs such as Opdivo). He wanted to interview me because I was one of the lucky 0.9 per cent who got T1D as a result of treatment. We set up a time for the phone interview and we had a nice chat about my history. I wasn’t sure I had anything useful to tell him because it seemed that I was rambling. Actually, I was surprised that I wasn’t more clear when it came to the timeline of events. A lot has happened in the last nine months and it’s hard to keep everything straight. Luckily, I have written a record of it, as well as the records from the hospitals for all my stays, visits, treatments, scans and lab tests so I don’t have to rely totally on my often foggy memory.
Well, as I said, I didn’t think much of it when I got off the phone, but I was soon contacted by the website’s photo editor asking for pictures of me taken during the period I was under treatment. Then I figured maybe something was going to come of it, since they were asking for pictures. In a few days I was contacted by the writer and told when to expect my story to be published on the website. And yesterday it was published and I was surprised to see my smiling mug at the top of the story. It wasn’t all about me, but it led off with me, in that way that news stories are often written, putting a human face on an otherwise dry, technical story. The meat of the story was about the research, I just happened to be the bread that the meat was sandwiched between.
Which is all good. I don’t want to be the poster child for immunotherapy induced diabetes, but if someone else who also has contracted diabetes as a side effect of immunotherapy does a google search and finds that article, they’ll know they are not alone. Seriously, when I first got diabetes I wasn’t so sure. I knew the numbers, that 0.9 percent of patients in the trials got diabetes as a result of treatment, but those numbers were just statistics. Until you can actually put a name or a face on it, it isn’t real. I still haven’t personally met anyone else who got diabetes through treatment, but I have heard from a couple of people in some of the forums, which helps. I hope my story helps someone else.
This is the link to the story. I don’t know how long the website will keep this story online.