Meet George Huntley, a longtime type 1 who you can pretty much think of as a "professional volunteer" in diabetes advocacy. OK, we made that title up, but it's apropos given what this Indianapolis D-peep has been lending his free time and passion to a huge array of advocacy pursuits since the early years following his T1D diagnosis in the mid-1980s. He moved up through the ranks to top leadership positions with the American Diabetes Association, and went on to help create the National Diabetes Volunteer Leadership Council four years ago.

That's all just the diabetes side of George, who is originally from Baltimore but has been in Indiana for two decades and is quite the interesting guy.

His professional resume makes a good read -- listing an eclectic array of roles from IT consulting and mortgage appraisals to life sciences to working at an 80s and 90s startup making computer game simulators, being part of a heavy machinery company's business which included overseeing a box-making plant and (seriously) becoming an expert in how strong boxes are made. Not to mention, George is also an accomplished half-marathon runner as well as a talented musician, whose singing and songwriting has led to five albums, including one about a little girl with diabetes.

We had the chance to talk by phone with George recently, and and it's our pleasure to share his story at the 'Mine today. It's a bit long, but we encourage you all to stick with this fascinating tale of a man with so many talents...

 

An Interview with George Huntley

DM) George, can you first share your diagnosis story?

GH) Would love to. It was March 1983 and I was 20 years old and in college, on Spring Break visiting a friend at the University of Delaware. There were the symptoms -- not being able to quench my thirst and constant urination. That turned into loss of vision and I couldn’t actually read anything even with my glasses on. So that’s a symptom I just couldn’t bluff my way through, like I did with having to go to bathroom all the time or being thirsty. But when you can’t see, that means you have to alert the process.

Yikes! Did you know anything about type 1 at the time?

Actually, my sister who is 12 years older than I, was diagnosed in October ’82, about five months before me. So, it was on the radar of the family. It was pretty quick in that they did a blood test and I was in the hospital a day later and on insulin ever since. That’s the initial piece of my entry into diabetes – losing your vision, now your world is changing. My sister’s world had already changed, and then you do your best with 1983 medicine and technology. That was certainly a helluva lot better than 1921 medicine and technology, but not as good as 2017. So, I was lucky to be diagnosed then when Diet Coke was just on the market, when home glucose meters were being introduced and going down from 3 minutes to 45 seconds, and Equal was unveiled. Mostly, it was a matter of doing what anyone with T1 does: admit you have it, and learn to adapt your life. I was embarking upon that. I graduated from college in 1984, and managed to not let diabetes derail me. So yes, me and thousands of other people with type 1 have graduated college… so congratulations to me.

How is your sister doing these days?

She's still in Baltimore and is doing great on a pump. Now, her oldest daughter also now has type 1, and I'm sorry to report that my great-nephew (the oldest daughter's son) was recently diagnosed with T1D in March too. So that's a heck of a family tree of diabetes -- to have myself, a sister, niece and great-nephew all with diabetes. Prior to my sister and I, there was no one with the history, which just may mean it happened prior to insulin being available.

What professional career path did you take up after graduating?

My day job has never been in the diabetes world, it's always been in general business with finances and operations.

I started at Price Waterhouse as a CPA. Then I moved to a software startup called MicroProse Software that made a gaming system software for the PC market back in the 80s, when it was the early Apples, IBM and Commodore 64 computers still on the market. We were making flight simulators and those type of simulation games, and this guy founded this business with two partners, Bill Stealey and Sid Meier, who are legends in the gaming world today, and turned it into millions before going public in the late 90s. I was not the leader in that, but was certainly part of the finance team when that process was going on. And it taught me I didn’t want to work for a public company. They were bought by a company in California, but I left during that process as CFO and went to a heavy machinery company in Baltimore that made machinery to produce corrugated boxes (stronger and more durable than regular cardboard boxes).

So, you went from video games to box-making?

You couldn’t get further away from what I had been doing, and I was there for 10 years.

If you think about box plants – and very few people probably think about those box plants – it’s very interesting and was a lot of fun. It doesn’t pay to ship an empty box, so therefore there’s a box plant around every major city on Planet Earth and a market for the heavy machinery to make these boxes. We went through an acquisition phase where we bought nine companies over a 4-5 year span, so we could provide every piece of equipment to make a box. Believe it or not, it’s a huge process and takes a bunch of equipment to make a box, and isn’t just one machine where a box comes out.

As part of that growth, we bought a company out of Indianapolis in the late 1990s and that made conveyor equipment that could be used in a box-making plant. In doing my due diligence I was visiting there, and ended up taking the CFO spot at that plant and moved to Indy where I could settle down. That let me get back into the operations side, which is what I love in getting into the technical, business and financial sides. Honestly, I don't look at boxes the same way since working there; now every time I Iook at a box I study it.

Where did you go after that?

That business unfortunately didn’t survive the recession of 2001, and I left there and went to Theoris Consulting, where I’ve been now for 16 years. I’m the Chief Operating Officer and CFO of the corporate parent over all the areas. When I started, it was an IT consulting and staffing firm, and today we’ve expanded into engineering, consulting and staffing and are launching a software product under a different entity for the mortgage appraisal business. We also have a life sciences consultancy called Maetrics that does quality and regulatory compliance consulting for medical device/ pharmaceutical/ biotech diagnosis world. It’s not specifically diabetes, but it’s the closest I have been to the diabetes world in my business life.

It all keeps me hopping, and really I just don’t like being bored.

So where does diabetes advocacy fit into all of this?

That all began back in 1986. I was at Price Waterhouse at the time, and I was going to an American Diabetes Association educational program with my sister. It was kind of like an 'Ask the Experts' type program, but not branded that way. I don’t remember what the touch-point was in marketing that got us there, but we were going together.

During lunch, there was a head table where some of the leadership from the ADA affiliate in Baltimore was seated and dining. I looked up and saw my boss from Price Waterhouse, and I made the pivotal mistake of saying “Hi.” We talked and I told him that I had type 1, and I came to find out he was the treasurer for the Maryland affiliate of the ADA. About two weeks later, I was the treasurer of the Maryland affiliate. That’s an absolute true story and how I got involved with the ADA, and it’s been an awesome ride ever since.

I've been involved at the local levels since pretty much 1986, helping to form the Baltimore Chapter and chairing the Maryland affiliate. I got on the national board in the 90s and committees, since it was pretty easy to get down to D.C. from there in Baltimore.

You helped the ADA consolidate its efforts in the late '90s, correct?

Yes, I was part of the merger effort in 1997-98, when the ADA combined all 50 affiliates into one corporation. It was a really powerful movement, in that from an operational efficiency standpoint you didn’t have to pay for 50 audits, different administrative staff and policies. Now you could suddenly have staff who might want to relocate from Baltimore to Des Moines actually be able to do so without losing tenure.

Just think about it: Collapsing 50 bureaucracies into one. You can argue, lament and moan about that one, but it’s better than not having 49 others to mess with. From a daily operational point of view, as part of the volunteer board, it meant we didn’t have to sit around in the Maryland affiliate and talk about the copy machine and lease for the office, instead of important fundraising work or sending kids to camp. We could focus on what we were supposed to be focusing on.

As a result of the savings from that merger, back in the late 90s, about $4 million per year additionally went into diabetes research. I am a finance and business guy, and one of the most fun parts of for me is giving presentations like that one where I could talk about research funding and what happened post-merger. It was a great learning experience, and I got to travel all around the country being a part of such a great organization.

Then you moved up the ADA ranks to leadership roles in the early 2000s, right?

ADA logoAfter moving in 1997 to Indy professionally, it only took three or four weeks to find me (chuckles). I got involved with the ADA chapter’s operations here with the gala and local fundraising, and eventually chaired the gala in the early 2000s and got on the leadership board and council locally. Somewhere around 2003, I was asked to rejoin the national ADA board. It was kind of a way to re-introduce me, and potentially put me on a leadership track. That was a year on the national board, the second time, before ADA put me on an officer track.

I was supposed to be treasurer under CEO Stewart Perry, but stepped away from that and was asked to take the chair track. I was delighted, because that was where my interest was. All of that put me on the ADA Executive Committee for four years, chaired it in 2009, and man you see everything at that level – whether it’s research, advocacy, education, everything that goes on with ADA. You wind up being in the room with folks that you have no business being in the room with, frankly, based on what they bring to the table with their experience and pedigree. I’m just a simple business guy. But sometimes, there’s a need for a simple business guy and I hope at some point I offered some value to the process. It was time-consuming and a lot of fun and exciting.

And you even helped select at least one CEO of ADA, no?

Yes, I chaired the national search committee to hire Larry Hausner as CEO in 2007, who was there for seven years. And then in 2008, I chaired the Health Reform Task Force that was tackling larger healthcare reform at that time, looking at the key issues people with diabetes cared about and needed to have represented in the discussions happening in Congress at that time. We actually got that done, which was pretty amazing and was a huge milestone for the Diabetes Community, and so educational for me as an advocate.

You start getting closer and involved in these big issues, and I ended up becoming a much more active advocate rather than just a financial guy in those years.

How did the National Diabetes Volunteer Leadership Council come about after your ADA time?

NDVLC logoWe formed the NDVLC in September 2013, actively about four years now. We are all former national chairs of the ADA, and we're also trying to recruit from the JDRF.

It's a group of lay-leaders, so by definition we're not from the medical and science side of the world. Our typical day jobs are not in diabetes. We are lay-volunteers, working our way up through the advocacy, finance and business ranks. In the ADA world, when you're done, the next person is coming up and by design you sort of fall off a cliff and are effectively done. You go from being fully engaged and contributing, to being back on the sidelines. At this point, you've been very educated and have gone through amazing learning experiences and transformation in getting to that level. Wanting to continue to participate and contribute, we looked for ways we could effectively do that in the marketplace.

How is NDVLC different than working within the ADA itself?

Advocacy was something this group cares about passionately and are skilled in, and in looking at ADA that is big and not always quick to turn, we felt we could be more nimble. So we try to get involved and react to things more quickly, if one of the big organizations doesn't have the bandwidth, manpower, budget, or fill-in-the-blank to do so quickly. We can talk among six or seven of us and make a decision, write a letter or get on a plane to go advocate and participate in the dialogue where we can. We've been growing in that arena.

What are the focus topics of NDVLC's advocacy?

 We care about safety, quality, access to care -- those are fundamental things the NDVLC cares most about. Sure, we care about diabetes research. But that is where ADA and JDRF (among others) can carry the ball very far, so we're going to support them in that. We also support programs like Safe for School and Diabetes Action Plans (DAPs) at the state level. For us, it's about filling in gaps and knowing where we can make a difference in the marketplace and get involved in those issues.

That may involve writing letters about CMS competitive-bidding, and access to choice in the diabetes devices and medications that we use. When the access to insulin issue exploded, we really wanted to step in and host the roundtable to talk about ways we can take all of this further -- that's why we held the Insulin Pricing Roundtable in November. That is a huge issue, and we can't afford to let that die down. It has to remain a priority, and we've got some more on that issue of drug affordability and access coming soon.

How did your business acumen help with these high-level advocacy efforts?

I've been involved with healthcare from an employer perspective since the 90s, being plan administrator for a self-insured health plan for 20 years now. So I know the nuances of plan design, how that impacts employers and employees, and who all the players in the market from insurance and re-insurance, Pharmacy Benefit Managers (PBMs), and more. I have a lens to look at that issue that's helped me (to see) what makes sense or what might be workable in the marketplace.

This is certainly a challenging time for ADA, with CEO changes and confronting healthcare reform, insulin pricing and access concerns. Any thoughts on their current direction?

Each class of ADA leadership has their own challenges and moments, things that will color their term. We had ours, and the current class certainly has their hands full. The ADA has some transitions to get through, and it's a strong organization. Even though we're not catching it at its best moment, there are a lot of passionate people involved who care, staff and volunteers. People with diabetes need ADA to be strong and be a key player, so we all need to do what we can to help make that a reality.

As to healthcare reform, how do you think the Diabetes Community should approach all of this?

It’s a scary time and so much to be vigilant about right now. On one hand, we could take two steps backward (with healthcare reform), but on the other hand if we get lucky and even make our own luck, we could maybe move a few things forward. You have to play defense and look for opportunities for offense, too.

What do you think about the overall 'state of diabetes advocacy' these days?

Everyone wants to make a difference, and that's where advocacy is so important no matter where your interests lie. Personally, I think diabetes advocacy is the strongest it's ever been in the history of diabetes. Is it strong enough? Well, it's never strong enough. In advocacy, it's often about leveraging and then amplifying the voice to make the most impact. These are really broad problems, and they need a lot of people and minds, hands and hearts to move the needle and make the world a little bit better.

We have more voices out there than we ever have, and that's great to everyone who is raising their voices to the choir. Sometimes, there is a frustration that we need to have a choir director that might make it more efficient. There are many big organizations and niche-players working together, and we need to make sure we're talking to each other and coordinating the efforts the best we can. You don't want to have someone re-creating the wheel, and what's so beautiful about the Diabetes Community is that support. This isn't about who broke through, but how we can break through together. This isn't a competition, it's a cooperation.

These are huge issues, for sure. How do you keep your sanity? And also run half-marathons with everything that's on your plate?

Well, back in the 90s, I was involved with Team Diabetes, a sort of marathon program where you raised money for the cause and ran a marathon. That got me running. I did three marathons in the process -- two for the ADA and another for leukemia once the ADA dropped the program. Since then, I've done 36 half-marathons. I don't do the full marathons anymore, since I'm getting old (on the other side of 50 now) and because they take so much time. Last year, I ran six half-marathons (two in the Spring and four in the Fall) and will be doing four this year. This diabetes journey takes you to different places, and that's added to my life and hopefully my health. Usually, I don't run every day but try to get out there four times a week. It can be painful at times, but it's something I enjoy.

Wow, definitely brings balance! Please tell us also about your music and making albums...

That's the other piece that's a big part of who I am: I write songs. It’s my "don’t quit the day job, but don’t quit doing it as a hobby."

If you ever get bored, I have five albums up on iTunes (and Spotify). They are adult contemporary, ballads, harmonies, not quite full-blown pop because I'm not Britney Spears by any stretch. It's not hard country, but I try to tell a story in my music. One of those is called Sarah's Dream, which I wrote a long time ago when I was still in Baltimore. It's about a child diagnosed with type 1, and what she and her parents go through. There is not an actual "Sarah" out there, but it was a setting I created to represent a story of difficulty as well as hope. Another from the Sunshine and Rain album is not diabetes-related, but it shows a bit more maturity in songwriting and singing. The recording technology got a lot better, too. I sang this one live with my nephew at his college vocal recital.

Has the music played into your advocacy at all?

I was in a 50’s band for a couple of years in the 2000’s. Had a lot of fun with it but wasn’t doing my songs. My favorite song was Johnny B. Goode. I did one concert of my material in 2011, and we sold CDs and donated all of the $900 in proceeds to the ADA. We also took food donations for a local pantry in lieu of admission.

Really, I am just trying to make a difference -- and at the end of the day, that's all you can do.

 

Thanks for sharing your story, George, and doing so very much to help our D-Community through the years!

Disclaimer: Content created by the Diabetes Mine team. For more details click here.

Disclaimer

This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn't adhere to Healthline's editorial guidelines. For more information about Healthline's partnership with Diabetes Mine, please click here.