Jeff Hitchcock is the founder of “Children with Diabetes,” an organization whose Web site has become an indispensible source of information and support for countless families around America and beyond. In the 1990s, Hitchcock was an Internet pioneer, using this new technology to help patients, but he was less a visionary than a desperate parent: his daughter had diabetes, and he knew that other parents had the same questions, fears, and hopes that he had. Hitchcock’s company now sponsors multiple conferences a year – the “Friends for Life Conference” in Orlando just took place – and he plans to expand that part of his business abroad, with the first international conference taking place in Toronto shortly. In this interview with diaTribe’s Jim Hirsch and Kelly Close, he talks about the origins of “Children with Diabetes,” the evolution of care, and the history of the organization’s conferences.
Jim: When was your daughter Marissa diagnosed with diabetes? What was the hardest part for her?
Jeff Hitchcock: Marissa was diagnosed when she was just 24 months old, in September 1989. It was a long time ago, and the tools used to manage diabetes then were certainly crude by today's standards. I guess the biggest challenge we would have faced was trying to reconcile a toddler's normal eating behaviors with the action of insulin. A smart child quickly determines that food is a powerful manipulative tool, and if you sit down for dinner and give X and Y and they say I'm not eating, mom and dad get rather anxious.
Jim: Sounds like our house. And does this bring us to how Children With Diabetes came into being?
Jeff Hitchcock: For many years after she was diagnosed, I worked in the high-tech software industry. There was one forum in particular on the old CompuServe forums about diabetes. The postings on there dealt primarily with adults who had diabetes; the number of people who had online access was very small back then - this is way before the Internet. There was nothing there to help parents, and absolutely nothing for kids. In the fall of 1994, I was in a company that got access to the Internet. It was clear that this medium was the perfect place to build a support environment for kids who had diabetes. At the time, there were a couple of sites online. The biggest was called the diabetes knowledge-base run out of the University of Wisconsin Madison. And again, the content was adults with diabetes, both type 1 and type 2. Nothing for parents.
As luck would have it, I found myself laid off in the summer of 1995. I called my Internet service provider and said I'm launching this site today; I need a full-time modem connection. CWD launched the day I got laid off, with a page about Marissa and some wacky graphics. And I had no real thoughts on what it would become.
Kelly: At that point, how many people had you communicated with who had children with diabetes?
Jeff Hitchcock: None that I recall, to be quite honest. There was nothing there for families who had kids with diabetes. CWD was sort of my attempt to pass on our philosophy, which was really to live your life and fit diabetes into it, not the other way around.
Kelly: How had you developed that philosophy over time, and who influenced you?
Jeff Hitchcock: Well, when Marissa was diagnosed, her endocrinologist at the Children's Hospital in D.C. left us with – for lack of a better term – a very positive diagnosis experience. We left feeling that we could make a big difference in her life. Those were pretty much the words he gave to us. And that we shouldn't really worry. I think he had seen changes in diabetes care beginning with home-glucose monitoring – recent studies have shown that kids diagnosed post home-glucose monitoring have a very different long-term outcome than kids diagnosed in the '60s, before there was home-glucose monitoring.
So we never had sort of a meltdown, “the world's over,” all that kind of stuff. We may have been very naive, but we just didn't have that.
Jim: Going back to the organization, how did it evolve as you got your feet wet?
Jeff Hitchcock: I made some overtures to companies and was told, “The Internet – that's pornography. We don't want to be there.” There was no financial support. I did receive a contract from the JDF, as the JDRF was called at the time, to build and host their initial website, which was called jdfcure.com. That lasted about 18 months before they took it in-house.
Back then, the Internet was very new. One of the things that helped us is someone at Yahoo discovered the site and featured us in a “what's new” page. Once that happened, our traffic began to just grow and grow and grow and grow. And the growth has not stopped.
Kelly: What was it like having people writing directly to you?
Jeff Hitchcock: CWD has always been free and anonymous. That has been one of the things I've always wanted. In maybe late summer – like October-ish – I probably got the first email to "Dear Dr. Hitchcock, please tell me about my insulin." About that same time, an endocrinologist in Kansas City ran a site called Diabetes Monitor, which still exists, and his Internet service provider was having problems keeping his site up. So I asked him if he would answer these questions in exchange for me hosting and keeping his site up, and he agreed. And that served as the foundation for what is now the “Ask the Diabetes Team” part of the site.
Jim: Were you still thinking at that point that this could be a business?
Jeff Hitchcock: No. At that time, having been told that no companies wanted to be online, from a sponsorship perspective, I had no delusions that this was going to be anything other than a hobby. It remained that until – I'm not even sure. If you go basically to late 1999, CWD was not bringing in any financial support to speak of. And it was to the point where I'd almost wanted to just turn it off, because it was so time-consuming.
It was in the fall of 1999, when people were investing a lot in the Internet, and Internet health in particular, that myself and two other people created Diabetes 123, our company, and took over running the website from what was the CWD Foundation, which is now a separate entity. We then promptly watched the NASDAQ crash.
So that was another very scary year. Another "go a long time and not get paid" kind of thing.
Jim: Did you quit your job?
Jeff Hitchcock: I walked away from what was a very nice job thinking that this was an easy business. You've got to kind of go back to the 1999 mentality and what we all thought was possible. Some of the things we had thought about doing just did not make sense in retrospect. Online diabetes education is a very expensive endeavor from an infrastructure perspective, and online sales of diabetes-related products has become something that the Wal-Marts and the Walgreens manage, not the small boutique companies.
But the other thing that happened in 2000 was Laura Billetdeaux, a mom on our parents list, sent a note out to that list and said, “Who wants to come share a vacation in Orlando?” Which became the first official CWD event in June of 2000. Her vacation email invitation went to the CWD list and 110 families - 550 people - showed up in Orlando. That was 1995, and the rest is history.
Kelly: Was that the first time that the companies had kind of reached out?
Jeff Hitchcock: We had some financial support from LifeScan. I think that came in about 1997 to fund a section of the site about camps. But that was pretty much it. There were a couple of little companies, but not enough to pay a mortgage and all that kind of stuff.
When it became clear that it wasn't just five families going to show up at Disney, that this was a serious thing, she began calling various diabetes companies. TheraSense stepped up and was the first company to provide financial support for a CWD event. This was prior to them actually having a product on the market.
They took a leap of faith in us that this was going to be something that was both worthwhile and would obviously be beneficial from a corporate perspective. You want them to feel that. But it was really a big leap of faith in us, that this sort of ragtag group of Internet people were going to do something. After spending a day at Sea World and a day at the Magic Kingdom, we asked the families what they wanted, and the feedback was that people wanted real conference kinds of stuff. These were parents who had gone to trade shows and conferences and such as part of their regular work, and they knew what these things could be. From that came the format for Friends for Life as we know it now – educational sessions, focus groups, a lot of social activities.
Jim: So, when did CWD in effect become your full-time job?
Jeff Hitchcock: I think sometime in 2002. We finally had enough both online support and sponsorship at the conferences that I could put aside the separate job. Of course, a deciding factor was health insurance. We were able to get a policy. It's basically a group policy with two families, my family’s and Laura’s. Without that, it would have been very difficult to do this.
Jim: Switching gears for a moment - what do you think the biggest problems are, either from a parent's or a patient's perspective, in diabetes?
Jeff Hitchcock: I don't know that there's a one biggest issue. I think a family's struggle with suboptimal care; going to clinicians who don't keep up or aren't aware of the latest management tools and strategies, and who impose purely artificial barriers to adoption of new tools, such as pumps.
Nothing is more frustrating than hearing a parent say, “My doctor won't prescribe a pump until my teenager's blood sugars are perfect.” They may not be able to achieve those goals without that pump – those are the kinds of frustrations I see.
Jim: What do you think are the biggest misconceptions or misperceptions among parents and patients?
Jeff Hitchcock: I'll give you an example that just came up in the last couple of days on our forums. A dad posted that his son was newly diagnosed, and he was very anxious about the long-term effects of type 1. He was just very worried that his son, who is now 16, is going to suffer what his aunt did 20 years ago.
I think there's this enormous misperception about type 1 versus type 2 in the general population, and a lack of appreciation for the dramatic advances that medicine has made in caring for type 1 diabetes in the last 10 or 20 years. I think that people new to this and who aren't left with a good diagnosis experience, leave feeling really anxious and depressed when I don't think they need to be.
Jim: The first time we met, you said to me that you think complications are a thing of the past. What did you mean by that?
Jeff Hitchcock: Well, there was a study published in Diabetes Care this year. Basically they looked at the incidence of nephropathy in kids who were followed for over 20 years. When they looked at kids who were diagnosed very young – say zero to four – and they followed them for 20 or 25 years, zero – not one – had developed nephropathy. Historically, kidney disease has been a very bad thing if you have type 1 diabetes. And this study showed very strongly that the world has changed. In kids who are diagnosed older – say the five to nine and 10 to 14 ranges – the incidence was just one percent for the five to nine year olds and just over two percent for the older kids. That is in stark contrast to kids diagnosed many, many years ago who had very high incidence.
That's the kind of positive news that families need to hear. Now that comes with the qualification that you take care of yourself. That you don't just dismiss it. But again, that is really a very positive message.
Jim: How have the products improved?
Jeff Hitchcock: When we compare glucose monitors from 1989 to today, we go from the best meter on the market that took 120 seconds and a drop of blood that would have made a bricklayer cry, to meters today that are in the three- to five-second range, with sub-microliter volumes. And integrated data management, or connections to computers to help identify patterns and improve management strategies.
We look at insulins – regular and NPH was the norm, and now both short acting and long acting analogs have given us incredible dosing options and much better predictability. They reduce the risk of hypoglycemia, which has always been the limiting factor on optimizing control.
And insulin pumps, which in 1989 were available but really were not something you would have put on a two-year-old, are now so small and so lightweight that you can put them on toddlers. And those tools are what has made that nephropathy study a reality. These tools make living with diabetes easier. And they've given patients the opportunity to basically have complications be something that they don't need to worry about like they used to.
Kelly: Can you talk about what product out there is doing really well with customers, and what makes it such a good product. Is it price? Is it great education? Is it that they like the color?
Jeff Hitchcock: I think the biggest deciding factor on products is customer service. If you look at insulin pumps, for example, that's a big cash outlay no matter how you cover it; a lot of supplies every month. And, effectively, you've entered into a relationship with a company, because most people buy their supplies from their insulin pump company. People talk about what happens when things break. Insulin pumps are mechanical devices, and like any mechanical device, some number are going to break or have a failure. And it's more how the insulin pump company responds to those episodes of crisis – because a pump failure is always a crisis – that determines how patients and future customers will view that company. People don't complain so much about the fact that their pump broke. They complain about the fact that their pump broke and they didn't get a replacement for three days because their rep was out of town…and the company didn't think they were important enough to make a delivery that night. That's where a little investment goes a long way.
Jim: What would you say for meters? Because meters typically don't break down, what's the deciding factor there for patients?
Jeff Hitchcock: For our audience – parents who have kids with diabetes – having a second meter that you don't have to go buy, so that you can leave one at school and have one at home, is a big thing. So a meter company that will accept a phone call to their customer service where Mom says, "Tommy is in school. Can you send me another meter – this is what he uses – so that we don't have to keep schlepping it back and forth?" Then they send it out, and it arrives the next day…that's what they should be doing.
Jim: We see more TV advertising for diabetic products than ever before. How would you assess that trend?
Jeff Hitchcock: There is no question that's changed. And you just have to look at the television to see all of the commercials for meters. The message adds things that matter to the patient, not to the clinician: it's painless, or it doesn't require coding; or the things that make a difference to the family. So it's very obvious that there is more direct consumer marketing in the glucose meter space.
Jim: What impact do you think that's actually had on the companies themselves?
Jeff Hitchcock: I have no idea. But I think it's a good thing if it raises the awareness that there are multiple tools. It's not just whatever you left the doctor's office with three years ago. You should be aware that there is innovation. And if it does nothing other than get someone to go and ask either the pharmacist, or their doctor, or somebody online, what's out there now, they may find a tool that's better for them. But it does sort of put some pressure on companies to continue to innovate and come out with new models and stuff.
Kelly: Your conference this year in Orlando was absolutely fantastic. So much incredible learning – and meeting so many increidbly interesting people. Year after year, more and more families come to your Friends for Life Conference. What is most drawing them to Orlando?
Jeff Hitchcock: One very important thing is that families who come and have a great experience want to come again, because they see that it's made an enormous difference in their children's lives and in their own. At the end of each conference, the teens are just sobbing as they part. It's mystifying. But they're literally just bawling their eyes out because they’re not going to see the friends they’ve met until the next conference.
And thanks to cell phones and email, they’re able to communicate throughout the year. But these kids from different parts of the country and, in some places, different parts of the world have become friends in a very powerful way. They share something with these other kids with diabetes that they just don't share with their peers at home. And the families, the moms and the dads, have the same kind of experience.
So we have this growing body of families who come. When they go back to their communities and meet in their support groups, they talk about what it was like. And word spreads, basically. We are able to bring these world-class researchers and clinicians to come and meet with the families and talk to them about daily care strategies and what's coming in a very relaxed atmosphere. And that's just an incredible opportunity for everyone, me included.
Jim: On a related note, what’s been most satisfying about what you have built over these years?
Jeff Hitchcock: When I sit here and look online at the traffic statistics, they've gone up consistently. But those are just numbers, and it's difficult to have an emotional experience with that pool of data. But when I'm standing onstage in front of 1,500 people and watching a slideshow of our kids over the years, growing up healthy and happy, and interacting at conferences and the like, that is very rewarding. It can't not be. So while the website, obviously, has a chance to reach many more people than our conferences can, the conferences have become the heart and soul of what we do.
Jim: What frustrates you or concerns you the most about diabetes today? You've spoken about how much things have improved, but there must be things that still get you frustrated.
Jeff Hitchcock: I think a very significant, unaddressed problem is access to these tools. And that gets to how we fund health care in the US. And, at some point – and I don't know how soon – as a nation, I think we have to realize that access to what we know to be good health care practices, whether it's in diabetes or cardiac health or anything, makes a difference for us as a nation, both economically and otherwise.
It's foolish in my mind that companies like General Motors have to worry as much about health insurance as they do about the quality and features of their automobiles. Those companies should be building cars or computers or whatever they do. And, as a nation, I think we need to step up and realize that healthcare matters as a nation, and we're just not there yet.
Jim: Do you envision ways of expanding what you've already got, or are you kind of getting ready to wrap things up and retire?
Jeff Hitchcock: I can't retire until we have scheduled the Children Who Used to Have Diabetes Conference. We’re not there yet, though I do look forward to that.