Today we interview the final individual in our lineup of 10 2018 Patient Voices Contest winners, announced earlier in the year. They're the folks who will be joining us on scholarship for our upcoming annual DiabetesMine Innovation Summit, which brings together key movers and shakers in the diabetes industry, medtech, regulatory and patient DIY/advocacy communities.
Today, please welcome D-Mom Moira McCarthy, who's become quite the well-known advocate in the Diabetes Community since her now 27-year-old daughter Lauren was first diagnosed at age 6. She's a respected voice active with JDRF, Project Blue November and many other efforts, and we're excited to feature her in this latest interview.
A Chat with D-Mom & Power Advocate Moira McCarthy
DM) Hi Moira, can you start by sharing your daughter's diagnosis story?
MMc) Lauren was diagnosed with type 1 on Oct. 28, 1997, twenty-one years ago at the age of 6. We also have an older daughter who was 10 at the time. My kids didn’t go to preschool, so other moms at the playground would say my girls would be so behind. But I worked and had a nanny, and spent a lot of time with the kids, so it was alright.
When Lauren was starting kindergarten, she was wetting the bed, having trouble sleeping, being irritable… and my friends said, ‘See?! You should’ve sent her to preschool.' I was thinking that was it. Then she started kindergarten and the teacher told us she couldn’t stay in class, because she kept having to go to the bathroom and water fountain. I didn’t know the symptoms, but she had her annual checkup coming up soon and I started to have a lot of questions that I’d never had this before. Driving to that doctor’s office in thinking about all of this, it started sinking in that something wasn’t right. Immediately upon arriving, they did a urine test and it seems like 30 seconds later, she was diagnosed and sent to children’s hospital.
Did you know anything about diabetes then?
We didn’t have very much knowledge about diabetes, other than peripheral experiences with type 1. I had a friend in college who kept insulin in her butter compartment, and that’s really all I thought about it. My uncle also had diabetes, but we didn’t know the different types then. So when Lauren was diagnosed, it was completely new and it was like the old adage of drinking water from a fire hose. I had to learn and get up to speed on all of it to help her live her life.
Which treatment tools did your young daughter start using?
We were early adopters; she was the first young child in Massachusetts to go on a pump and one of the first kids in the nation to go on a CGM. The summer after diagnosis, she went to Clara Barton Camp (for girls with diabetes), and came home from camp to tell me there were three teenagers there on a cool thing called an insulin pump – remember, these were the days before the Internet, so as far as we knew the whole world with diabetes was on NPH and Regular, and eating a snack at 10am and 2pm.
She thought the pump was pretty cool, so I started to research it myself. I finally asked about it within the next year, and her endocrinologist told me, 'When you can drive a car, you can drive a pump.' That was the policy in the late 1990s, for her endo’s office in Boston. I went back and forth with them for a while, before they finally said OK – and added that I’d have to understand, if I called the on-call endo, they wouldn’t have any experience with young children and pumps. They trusted us to pilot it. But I like how Lauren led me to it, and I had to do the grown-up thing of researching and asking the endo for it.
Did finding online resources help push you towards an insulin pump?
Back then we had to use dial-up Internet to connect with others… Through the Children With Diabetes forums, I found a a woman named Ellen Ullman from Florida who had put her son on a pump as a toddler about four years before that. She was an unbelievable resource for me. It was exciting at the time.
Lauren's first pump was the Minimed 508, when there were only two pumps out there on the market, and then she moved to Cozmo, back to Medtronic, and now to Tandem. She used the very first Medtronic CGM (not the seashell-shaped sensor -- the one before that!). Lauren moved on to Dexcom years later. She’s very much an "on and off" tech person, and takes breaks from it from time to time.
What was school like for her, especially with those new gadgets?
It was opportune time to be an early adopter, because the schools had no idea because there’d never been a child with diabetes on an insulin pump or CGM. I got to setup how it was handled, and Medtronic sent a person in to do the training for the school because it was such a big deal. It was kind of cool. Within two or three years, of course, everyone was putting kids on pumps.
How did Lauren do during those challenging teen years?
Over the years, Lauren has been the quintessential, model patient and poster child. But those are often the ones who are setup the hardest when they struggle. In hindsight, I learned a lot, but I don’t have a lot of regrets because I always involved her in choices. The way I found out about her struggling was more shocking to me than her diagnosis, in that she was hiding things and lying to me and ended up going into DKA. That was at age 13. It was right under my nose, and my arrogance and perhaps my own burnout, got in the way of me seeing it at the time.
After that, we learned all we could, and she never went into DKA again. However, she struggled on and off for a number of years. We decided as a team that we were going to be public about it, because it’s kind of like the Scarlett Letter of diabetes – there was all this shame around these struggles, when in reality all of these teenage hormones along with diabetes burden is like a melting pot for trouble. Why should people be ashamed? It’s like mental health. We have to put it out in the open so that when people experience it, they realize they’re not alone. That’s why I wrote the "Freedom Is Their Secret Drug" post back in 2010 for DiabetesMine, right before Lauren went on to college, and it still gets shared hundreds of times per week.
Was there any particular turning point for her?
Yes, the best thing that ever happened to Lauren was when she decided it was time to switch to an adult endocrinologist. That endo helped her grow into her own in diabetes care, and life in general. She’s also recently told me that the experience she went through as a teen seems to her now almost like being a recovering alcoholic. If she feels it coming on, slipping a little bit toward burnout, she goes immediately back to 'step one' to take care of herself.
And even with those struggles as a teen, it sounds like Lauren’s always been in charge of her own diabetes management?
A fun fact: I’ve never changed an infusion set on her. She’s kind of a go-getter, and on the day she started up, she said ‘It’s my body and I’m going to do this.' She has been a leader for all the way through. She’s now 27, and is the policy and government relations person for the American Society for Civil Engineers in Washington D.C. She’s phenomenally healthy and takes remarkable care of herself. She’s in a sweet spot right now, not giving diabetes any more power than it deserves. It does deserve some and you need to pay attention, but it doesn’t have a right to make you angry and making you feel bad about it.
What about you? What do you do professionally?
You know when you have career day in elementary school? Mine was fifth grade, and when everyone brought in a stuffed dog and talked about becoming a veterinarian or a hat to become a policeman, I walked in with a copy of Ski Magazine and said I was going to write for the magazine and go on adventures when I grow up. My teacher said I needed to have a more realistic goal.
So I always had this idea about how I wanted to live. To get here, I had to go the long road. I spent 11 years as an award-winning crime reporter and editor. Since 1995, I’ve been doing this. Basically, I get to go on vacations and adventures and write about it, so people can read about them and get excited. For the past three years, I’ve won three of the top adventure-travel writing awards in the world… which is incredible. I’m pretty lucky and have worked really hard to get where I am, and I’ve appreciated every minute of it. It’s as good as I thought it would be when I talked about it in fifth grade. I’m living the dream.
As far as diabetes advocacy, you’ve been actively involved in so much over the years…
I really do think of myself as just another mom who happens to have a few skills and time on my hands to help out. A year after Lauren was diagnosed, in what I still refer to as “the dark ages” of diabetes before real Internet, I knew only one mom with older kids. I was really on my own.
One day I walked into a Marshall’s store with the kids, and the cashier asked if I wanted to donate a dollar to help cure diabetes. A light went on over head, and I got very involved with JDRF. And then later, my older daughter mentioned maybe I could do more than that, and I started to go off to do more in advocacy. I was on the board of Lauren’s diabetes camp – Clara Barton – for years, but really JDRF has been a big part of our life.
What are some of the things you've done with JDRF?
We started with walk teams and all that, and heard about JDRF Government Relations that was in its infancy at that point. I got involved and went to Washington D.C., and felt like I’d found my sweet spot. I understand government because I’d been a reporter for years, knew how to speak and build relationships. I felt empowered after a couple years of that.
That was the beginning, and I went on to become chair of the Children’s Congress, where Lauren had testified and shared her story, and National Chair of Advocacy at JDRF for a few years. Honestly, I think I take away more from it than I give, because I surrounded myself with a community of people who spoke the language that I spoke and could support us when we needed it. While I felt like I was helping the diabetes world, I was helping myself and my daughter. The balance tips more to what I’ve received than I’ve given.
You’re also well-known for participating in JDRF bike rides… tell us about that.
I once said to people at JDRF, 'You’ll never get me to do one of those stupid bike rides.' Clearly, that’s changed.
We had a very large walk team for many years, one of the biggest in the country, and when Lauren went to college, it dissipated. That year I felt really bad about the $20,000-40,000 we’d raise that wasn’t going to research. So for Lauren’s 15th diabetes anniversary and her 21st birthday, I thought about doing a bike ride once and see how it goes. I bought a bike and started training. I decided on the Death Valley Ride, because why not start big and go all in?
The support I got blew me out of the water, and I realized that as much as I felt like I needed to keep pushing, my friends did too. I raised $40,000 that first year. It was only supposed to be once, but I’m still doing it now. I’ve done 10 rides to date since 2012, but have done more than one in some years and am the national volunteer lead of the ride for now. A bike has given me a way to continue getting and continue giving back, after Lauren has gone off to college.
Can you also talk about your involvement in online campaigns, such as Project Blue November?
That started because a few friends and I who are all D-Moms were watching the Diabetes Community right after the Ice Bucket Challenge for ALS in 2014, and all these people were saying diabetes should have one. We didn’t have one, but we knew there was a lot going on in the diabetes world online and offline that you can tap into. We wanted to create a sort of clearinghouse, where you could go and find all the things happening in November (National Diabetes Awareness Month) and year-round in the diabetes world.
We didn’t want to have opinions or raise money, but just wanted to create a space where people could find vetted and trusted information about diabetes. It’s been pretty awesomely successful, with about 55,000 followers with a level of engagement that blows us away. And all just for an investment of our time, with just a few of us doing it. We feel like we’re making a difference and people appreciate that.
What have you noticed about the evolution of the DOC (Diabetes Online Community) over the years?
It’s very much a double-edged sword. I wish when someone was newly diagnosed, there was sort of a beginner’s track in the DOC to go through. Fortunately, and unfortunately, it’s a place where people can share all of their feelings about diabetes. Sometimes, that can overflow into anxiety, worry and fear. While we’ve come so far ahead in connecting people and developing new tools, we have moved backwards when it comes to the level of anxiety and fear being created online – especially for parents of children with diabetes. The fear they feel now is way more intense and life-impacting than the fear we felt before the DOC, in many ways.
Yikes… what do you think we can do about that?
There’s a complication of diabetes that we can cure, and it’s called fear. The way to cure it, is to help people vet their information and slowly ease into gaining a confidence of living with diabetes, before they’re exposed to some things in the DOC.
In other words, it’s an awful lot for the newly diagnosed to click into a Facebook page and see all kinds of things people are saying, like “I’ll never sleep again,” “I can never send my kids to slumber parties because the CGM isn’t working,” and even “I have to keep my kid home from school because the Wi-Fi there isn’t working and I can’t see their numbers.” Obviously, we’re living in a better time and I’m 100% for all the tools – remember, we were early adopters. But at the same time, it would be nice if people understood this was a step forward, and that if they didn’t have these things or could go online and read these comments, they’d probably be OK.
How might things be different if Lauren were diagnosed now?
I’m quite sure that if Lauren was diagnosed at some point in the past few years, I’d be one of the most fearful parents around. I understand how you can end up in that place. I like to tell people that in the beginning, listen to your endo team, find someone you trust, and find people in real life who can support you by looking you in the eye.
To this end, the same moms who created Project Blue November have created a new Facebook page called Learning to Thrive with Diabetes. We train the moderators, and only those people who are trained are allowed to answer questions; we are very careful about what’s allowed to be posted and shared, and we have some educational posts. And then we kick the members out after a year, because you’re OK and it’s time to move on and go play in the rest of the DOC. That beginner's space is a sample idea we’ve tried, and maybe something we could get more people on board with. As with any new technology, you need to take it slow and ease your way in.
In your opinion, what can (or should) the diabetes industry be doing better?
I'm calling it -- for now -- "Thoughtful innovation; compassionate integration." We need to teach and guide the patients who adopt products in "Zombie apocalypse diabetes training." Meaning: "Sure, this tool is amazing, innovative and even, perhaps, life-changing. But hey: HERE is how to do fine without it, for those times when you might have to be."
With all the push toward innovation, how do we balance ‘privilege’ with meaningful access and affordability to things as basic as insulin?
That’s on par to become, if it isn’t already, an equal issue to curing this disease. What good is it to have all these new pumps that do crazy cool things, but only the fortunate can afford them? We need to do better. For many, the only way to manage is to go back to NPH and Regular. Yes, you can get by on those older insulins. But I never want my daughter or anyone to have to do that.
We’re now starting to see some orgs poke at this issue, and I believe this is as necessary as funding research for a biological cure right now. We have got to create a society where, these better tools and technology, people can actually get them in their hands. It has to be more than a drumbeat.
Let’s look back to the early days of stem cell research, when 85% of America didn’t know what it was so they didn’t support that. It was the Diabetes Community in partnership with some other communities, that got educated and went out with facts and didn’t stop sharing until we changed the law. That’s a perfect example of what we can do, even if it took 10-12 years, and how we can change policy at a grassroots level. It was scary back then because it seemed insurmountable, and involved the government and researchers, but we did it and can do it again. We need that kind of smart pressure in a coordinated way.
What's got you excited about attending the upcoming Innovation Summit?
Learning, networking, peeking into the future, and being heard.
Thanks for all you've done and continue to do for this D-Community, Moira! We look forward to seeing you in San Francisco in early November.