Congrats again to the 10 winners of our 2018 DiabetesMine Patient Voices Scholarship Contest, announced earlier this summer! Over the next several weeks, we’ll be featuring an interview with each, leading up to our annual DiabetesMine Innovation Summit that brings together key movers and shakers in the diabetes industry, regulatory, medtech and patient advocacy communities. We’re excited to extend a full scholarship to our PV winners!
First up, please meet Stacey Simms, a D-Mom in North Carolina who’s well-known in our community as host and producer of the weekly Diabetes Connections podcast. Her son Benny was diagnosed as a toddler in 2006, and Stacey has some specific thoughts to share about how she sees the world of diabetes innovation.
DM) First off, can you share how diabetes came into your family’s life?
SS) Of course. My son Benny was diagnosed in December of 2006 just before he turned 2. We didn’t have any family history of type 1 (that we know of) but an older cousin was diagnosed a few years later.
Give us a taste of the diabetes tech and tools that your family’s using?
Right now, Benny is using Dexcom G6 and the Tandem X2 pump. We’ve used an insulin pump since six months after diagnosis (until Animas went off the market last year – RIP). At the moment we are eagerly awaiting Tandem’s new Basal IQ (with self-adjusting insulin rates) – can’t wait to try it!
Quite a lot of advancement in just the last few years, no…?
When we started, we had to use syringes since there were no half-unit insulin pens — an issue because Benny needed much less insulin than that. His basal rate was .025 per hour and I remember having to try to give him a .75-unit for a 20-carb yogurt. Then our endo told us that a new long-acting insulin (Lantus) had just recently been approved and I remember feeling pretty lucky.
He started on the Animas Ping in July 2006, and the meter remote for it came out a few years later. The Dexcom CGM came out when Benny was age 9, and I recall that I’d heard a lot about it, but it didn’t seem accurate enough at first for me to push it. So we waited until he wanted to wear it. That was in 2013 — there was no Share app (to allow followers) with that model, you just had a receiver.
Now, of course, we can see Benny’s BG levels on the phone or wherever. This month, his CGM and pump will actually start communicating – something our endo told us was coming while we were in the hospital in 2006! Obviously we all want things to move faster, but I’m excited that we’re here.
How does your family navigate the sensitive issue of data-sharing?
Great question! As I mentioned, we had no CGM for 7 years, and Dexcom Share wasn’t released until about 2 years after that. I think this is a huge issue that needs a lot of thought before an adult lets someone follow them or a parent decides who will follow a child.
We talked it out together with Benny and decided that only my husband and I would follow him. We have parameters under which I will text or call him. Things like, if he’s over or under a certain number for a certain period of time. If he hits 55, I’ll give him 15-20 minutes to text that he’s treated and is okay. From time to time, my mom will follow him, especially when she’s visiting or he’s in her care.
We have never had the nurse or any school personnel use data sharing. I’m sure if he’d had a CGM when he was much younger, we may have handled it differently. But I would caution parents not to just follow their kids without a conversation. Even in elementary school, having your child’s input means a lot in terms of trust going forward. And I know this isn’t what you’re asking, but we never share Benny’s data online. The last thing a person with diabetes needs is a traceable trail of A1C numbers following him or her into adulthood.
Do you ever worry about “helicopter parenting”?
There is no doubt that when you have a child with type 1, there are worries and systems that you don’t need with your non-type 1 kiddos. That said, I think there has been an explosion of helicoptering… even becoming a ‘drone parent’ (right in your face!) in the last 10 years.
I know of parents who will sit in the parking lot all day at school or camp — and parents who go to their child’s college dorm! It’s hard, I know. Personally, I think we need more education and less judgement for these parents. Most of them helicopter out of fear. We put Benny right back in daycare after diagnosis. I’m not sure I’d feel as comfortable doing that now and I think social media is mostly to blame. It is a huge source of support, but it’s also a huge source of fear due to misinformation and over-reacting. We send Benny to regular (non-diabetes) camp for a month every summer. No cell service, no Dexcom Share, and while I worry (trust me I worry) he’s fine.
But I get a lot of people telling me they could never let their child do that, and it makes me sad. My adult friends with type 1 have guided me toward pushing independence and not expecting perfection. It’s very hard to do, I want to jump in and fix everything! But it’s already paid off for us. Benny doesn’t fear diabetes, but he tells me he does care about it. That’s about all I can ask from a 13-year-old.
How did you first get involved in the Diabetes Online Community (DOC)?
I started blogging about my family’s experience just a week or so after Benny was diagnosed, at the very end of 2006. I worked as a morning show host at a News/Talk radio station and we shared information about our personal lives. After I mentioned why I’d been out a few days, we started getting a lot of email – some with questions, some with support from people with type 1 (“Don’t hold Benny back!!”).
Blogging seemed to be an easy way to share what was going on and at the time, I had the radio station resources to help me with what seemed like a very difficult project. I knew nothing about websites or blogging! Once I started my blog, I found others and other people found me. I jumped onto Twitter in 2008 and later found DSMA, which really helped me find support (practical and otherwise) and helped me meet so many of the people I consider mentors and friends today.
Can you tell us about the diabetes advocacy efforts you’ve been involved with?
I sat on the board of my local JDRF for six years. We like the walks because it’s helped us find our local community. My biggest form of advocacy is probably my local Facebook group. I started it in the summer of 2013 with the goal of connecting in person and offline with other parents of type 1 children. Five years later, we now have more than 600 members and it’s become a great clearinghouse for any and all local diabetes events and meetups. I’ve always been a “connector” and I truly believe that helping people meet face-to-face can lead to much stronger relationships, better health outcomes and even more creative advocacy.
Although I don’t consider my podcast true “advocacy” I do hope it’s helped provide a platform for those who do that kind of work. I feel that it’s my role to provide a way for people with great ideas and who are pushing for change with a way to reach and connect with others. There’s that word “connect” again! Sorry, can’t help myself!
And can you tell us more about your Diabetes Connections podcast?
It started out as a way of having conversations about connecting in real life. I’m passionate about that, as I’ve said, and if you go back and listen to the first four or five episodes, that’s a big focus. But I realized that, not only did I miss the news aspect of my radio show and TV career, I felt that there was a need for a “radio” type news outlet in our community. So now I try to focus on getting out in-depth interviews and asking tough questions when warranted.
A weekly podcast can’t really keep up with all the breaking news in the diabetes community, so I try to focus on the big picture. I’m online every day reading sites like DiabetesMine and scrolling through social media to find content for the show. I have a list a mile long – I could do the show several times a week and just to start to scratch the surface! It’s also a question of balancing breaking news, technology updates, celebrity and inspirational interviews and making sure I feature “every day” people with type 1. I also put a lot of time into podcast production – it’s important to me that it have a professional radio news sound – as well as managing all the guest coordination and social media. Maybe one day I’ll grow enough for a staff and we’ll do a daily show!
Any thoughts on the DOC’s evolution over the years?
I’ve been active in the DOC for just over 10 years, really, and it’s changed in the way I think. Twitter and Facebook have taken over from blogging – they’ve made it easier for everyone to share. That’s a great thing; everyone has a story and we can all learn from each other.
I’ve never felt the DOC needed to speak with one voice, and anyone who thinks we always have hasn’t really looked closely. More people posting just means we’re seeing (the diversity of opinions) more. I also think the online community is aging up. That’s hard to hear, I know, but think about the main bloggers, vloggers and posters who came into the space 10 years ago. Ten years is a long time. You’ve got a whole bunch of energetic “kids” now who want to disrupt the status quo and do their own thing. For me, that means learning Instagram, but it also means understanding he needs of a 20-something with T1D may be very different from a 40-something mom with T1D kids. Same rules as always. Respect opinions and be polite. If you wouldn’t want your mom reading it, don’t put it on social media. And you do NOT have to respond to people trying to bait you. Ignoring rude comments is A-OK by me. But I may have a thicker skin than most, after all those years in talk radio and local news.
What do you see as the biggest challenges in diabetes right now?
Cost and access. I’d like to add mental health, more basic education, more education on technology and on and on, but none of those can improve without improvement to cost and access.
Definitely. Innovation’s great, but how do we balance that with access and affordability?
Unfortunately, at this point I think it will have to come down to legislation. No insulin company (and no health company that I know of) has decided on its own to lower prices and improve access across the board. I think it can be balanced, but there may be fewer profits. That’s asking for a seed change in American healthcare. But I do think it’s coming.
Straight up, what would you tell industry they can do better?
This is a tough one. We want them to lower costs and help us more, but that’s not their job under the way our country’s healthcare system operates right now. I’d like to see them continue to innovate and work with those who want a more open platform for technology. I’m optimistic that state legislators will succeed in pushing for greater transparency and help push down the price of insulin, but I think it may take major changes on the federal level to really move the needle. I don’t mean political party change – neither party has shown itself capable of moving the needle on medication pricing. I mean changing the way they think about the issue. In the meantime, the industry can be more transparent and try being just a little bit patient-centered. Include us!
What are you most looking forward to at the Innovation Summit?
Meeting everyone there! As a self-described non-techie, non-numbers person, I’m looking forward to listening and learning, but also being a voice for those of us who aren’t comfortable hacking our devices or using lots of online options to manage diabetes. Or maybe I’ll come away a changed woman!!
Thank you, Stacey. We’re excited to include you in our event and the lively discussions that will surely take place there!