The following is a conversation between Derek Rapp, President and CEO of JDRF, and Denver Frederick, Host of The Business of Giving on AM 970 The Answer in New York City.
Denver: Anyone who knows a person with type 1 diabetes knows only too well how difficult it is to manage this disease. It requires attention every minute of every day. JDRF is working to lessen that impact on people’s lives, and ultimately, to find a cure. And here to tell us about that work is the President and CEO of JDRF, as well as a parent of a son who has type 1 diabetes, Derek Rapp.
Good evening, Derek, and welcome to The Business of Giving!
Derek Rapp: Good evening, Denver. Thanks very much. I’m glad to be here.
Denver: Tell us about JDRF, the history of the organization, and of your mission.
Derek: Sure. JDRF was founded in 1970 by a couple of parents of children with type 1 diabetes– sons. One in the New York City area, one in Philadelphia. These were people who were determined to help their kids with type 1 diabetes to one day be able to learn what it’s like to live a life again without type 1 diabetes.
Denver: Yes. And speaking of type 1 diabetes, what’s the difference between type 1 diabetes and type 2 diabetes?
Derek: Type 1 diabetes is an autoimmune disease, where a person’s body stops producing the insulin that is required to help a person convert sugar to energy. With type 2 diabetes, on the other hand, a person continues to produce that insulin, but the person’s body becomes resistant or isn’t able to work with the insulin as effectively.
Denver: Good distinction. How many people in the US are afflicted by type 1 diabetes?
Derek: We don’t know for sure, but our guess is between 1.25 million and 1.5 million probably.
Denver: I know type 1 diabetes can strike both kids and adults, and it can come on very suddenly. Do we know what the triggers are that instigate this?
Derek: We know some. We’re pretty confident we know some. We certainly know that genetics are a significant factor, but they’re not sufficient. I’ll be sharing an interesting statistic. About 50% of the time that identical twins– where one has type 1 diabetes, so does the other– which also of course means 50% of the time, the other one doesn’t. That’s how the genetics are important because that’s far higher than it would be for other siblings who aren’t identical twins. But at the same time, obviously, there are some factors that trigger the onset in those 50% who do get it.
Denver: Yes. I’d be curious what that is because I know that type 1 diabetes has been on the rise a little bit.
Derek: It sure has.
Denver: Yes. Any explanation that you can even put forth?
Derek: Well, we know that certain viruses are significant. Viruses such as hand, foot, and mouth disease or coxsackie virus, enteroviruses. Respiratory infections in the very young are believed to be significant in triggering an immune system in a person that amps up in order to fight that infection… just like it’s supposed to. But then for some people, unfortunately, that immune system doesn’t calm back down like it’s supposed to. Instead, it looks for another target – something else to do, if you will. And unfortunately for people with type 1 diabetes, that something else to do is to go target and kill the beta cells that produce the insulin in the body.
Denver: Your son, Turner, was diagnosed with type 1 diabetes back in 2004, and I would guess that no matter how much you may think you know this disease, you really don’t fully understand it until a loved one has it. What is it like to live with type 1 diabetes?
Derek: That’s right. In fact, I had some good friends in college, and my wife had four relatives who had type 1 diabetes before Turner was diagnosed. And so certainly, the disease was around us. And yet when it became part of our immediate family, only then did we start to understand the insidiousness of this, just the never-ending impact, of this disease.
Imagine a disease that requires a person to constantly be vigilant about what he or she eats and how much exercise that person is getting. Whether that person is stressed out by some factor. Whether a person has hormonal activity due to puberty, or whatever it might be. All those factors can cause a person to process insulin very, very differently. So we know that a person with type 1 diabetes has to have a variable dose of insulin every day, different times of day, and yet can still get it wrong.
With too much insulin, perhaps causing a person to have a catastrophic event that can even include seizures or death, and too little insulin that will cause a person to have high blood sugar, both making that person perhaps concerned about the longer term complications, but also even immediately about the possibility of diabetic ketoacidosis, which again, can be catastrophic. So it’s an extremely complicated, demanding disease.
Denver: So, what’s his life like? What does he have do every day in terms of trying to manage this successfully?
Derek: I’ll first say, as Turner’s dad, that I think he’s doing fantastically. I’m relieved and proud and grateful. Turner wears a pump, an insulin pump, and many people think that that pump has the intelligence always to know when a person needs insulin. Well, truthfully, no! That’s a pre-programmed device that will give insulin when it’s told to, and that’s going to happen whether or not the person needs insulin. I’ll get to that some more in a second because I’m glad to say we’re changing that.
Turner also wears a continuous glucose monitor which is a device which is constantly reading… and giving a new reading every five minutes… his glucose levels in his body. And therefore, it allows him to know how he’s doing, provided he is vigilant. So then, he has meals through the day, and he has to tell that pump that he’s had a certain level of carbohydrates in that particular meal, or he watches his numbers, and if he’s higher, he slowly needs to adjust accordingly.
Turner’s a very active guy. He has run four marathons. He recently did the New Jersey State Olympic Distance Triathlon. He’s doing a lot. In fact, a week from Saturday, he’ll be riding 100 miles with me in Colorado, and therefore, he needs to know how his body is doing all through that time, and adjust his insulin levels and his sugar intake accordingly.
Denver: What are the implications of a high glucose level, and on the other hand, when it’s low? What are the impacts of those?
Derek: Type 1 diabetes– and diabetes in general– is the leading cause of adult-onset blindness, of extremity amputations; second leading cause of heart disease; leading cause of kidney failure, and a lot of other issues as well. So when a person has poor control over time– or even variability of blood sugar level– that puts a lot of strain on the body, and it can lead to those different complications. So that’s a big concern always.
I mentioned earlier the possibility of diabetic ketoacidosis, which is when a person’s electrolytes get so out of whack that the organs then start to do some strange things, and even perhaps to shut down. That, as you might imagine, can lead to terrible consequences. So, that’s the discussion of the high blood sugar.
On the low blood sugar side, when a person has too much insulin– versus the amount of carbohydrates that he or she has brought in…For the rest of us who don’t have type 1 diabetes, our bodies have all these different regulators in us that can allow us to constantly adjust. But the person with type 1 diabetes doesn’t have the ability to regulate that way. So with low blood sugar, a person can go into seizure and to coma and into death. It can happen very quickly. But unfortunately, the ketoacidosis can happen quickly too. I hear too many frightening stories, and the fact is many people die of ketoacidosis as do of low blood sugar with type 1 diabetes.
Denver: Well, let’s talk about some of the work that you do in research. It was about a decade or so, Derek, that JDRF launched the Artificial Pancreas Project, and this was a tremendous collaboration to accelerate progress in an effort that has really transformed the field. Where do we stand right now with the development of the artificial pancreas?
Derek: You’re right. This is one of our prouder accomplishments over the last decade plus. At this point, the first hybrid closed-loop artificial pancreas system has been commercialized. Let me explain that long term I just used.
Hybrid closed-loop means that it’s not a perfectly automatic system. I described earlier that the pump wants to keep producing and expressing insulin, so what we want to do is we now want to have a system that will know when to turn off if a person has too much insulin… not enough sugar in his or her body… or will automatically administer insulin when a person has high blood sugar. Now we have a system that will do that.
Now, a person is still telling the system when that person’s having a meal in order to try to help that system catch up with the load of carbohydrates that will be coming in through a meal, but it’s allowing the person to have much tighter control than otherwise would be the case. We have several systems like that that will be commercially available in the next few years, and they’ll keep getting smaller, easier to wear, more accurate, et cetera. So, great progress in that area.
I want to also mention about this that it’s not just about the research, it’s also about the advocacy work that we do. In fact, we work with, for example, the Food and Drug Administration here in the U.S. to help the regulators know the importance of bringing these therapies along. And as part of that, to providing a road map that will allow the companies that make these devices to know what they need to do in order to have a regulatory approval.
Back some years ago, when we knew that the different companies in this space had their continuous glucose monitors… and they had their pumps and the systems that might put it all together, but they weren’t producing the full systems, it was because they were seeing a lot of uncertainty at the FDA in terms of what would be required in order for them to be able to get a product approved. So we started a very public campaign to impress upon the FDA the importance of laying out that road map. Eventually, after our insistence, the FDA did just that, and that’s why we now have one of these products already available, and others that are coming along. Again, our work and advocacy is very, very important.
Denver: Yes. Well, it just seems like that’s a by-product of the time you spent in the private sector, and knowing how important it is that companies know what the rules of the game are in order to get them to get on board.
Derek: There’s nothing that a business person hates more than uncertainty. You can handle bad news.. and maybe adjust the valuation or whatever else, but that uncertainty paralyzes people.
Denver: It sure does. Another area that has received a lot of attention recently is encapsulation. What is encapsulation?
Derek: Well, in fact, I’m holding right now in my hand a non-mechanical device that is exactly one of the examples we have. The idea of encapsulation is that cells that would express the insulin are put inside of a small device, and this device that I’m holding almost feels like a Band-Aid though it’s made of algae. And cells would be put inside of that device, and the device will hide those cells from the body. So therefore, the body won’t want to reject or attack and destroy those cells. The fluid will pass through a membrane and tell those cells when a person has high blood sugar, and then those cells will naturally express the insulin that will pass through the membrane and out to the body and help a person stay in range. A device like this might work inside of a person for a couple of years without the person having to do anything at all to control his or her glucose levels – no shots, no testing, anything.
Denver: Very exciting. You probably have, I don’t know, 60 or 70 clinical trials going on right now, so you’re in the advanced stages of testing. What are one or two that really excite you?
Derek: Personally, and I could say: many! It is like choosing one of your children, I guess. But I’m very excited about our work in prevention because I am quite confident that we will at least significantly delay, if not truly prevent, this disease, for lots of people. So I look at clinical trials that we have going right now in the application of different drugs from other autoimmune diseases to type 1 diabetes, because we know that the correlation among different autoimmune diseases is high. And so we’re trying to get to the fundamental mechanism… the causes of these different autoimmune diseases and see if we can use that as a way to keep a person from ever getting type 1 diabetes in the first place.
Or we have also discovered some important steps in the process that leads to the destruction of those insulin-producing cells, and we now believe that we have some ways to perhaps stop those steps from happening and therefore protect the insulin-producing cells in the body. So those are some trials that excite me a lot.
You mentioned encapsulation. There are multiple encapsulation trials that are happening right now. You mentioned artificial pancreas. We have lots where we are testing better systems that will allow those devices to work together more effectively… easier to wear devices, all kinds of things.
Each child or person that goes to an emergency room… that costs $25,000 or so. And if we can have better, tighter control of glucose, that keeps those emergency room visits down. Then obviously, that’s saving a lot of money for the system too.
Denver: Yes. Exciting times to be in the field. Type 1 diabetes, among all the other challenges it presents, is not an inexpensive disease. I mean, there’s a cost of insulin, the insulin pumps; you just were talking about artificial pancreas systems. How do insurance companies do, by and large, in covering these costs?
Derek: It’s another area of our advocacy effort is working hard to make sure that people have access to these important therapies and on a reasonable basis. I would say my answer to you is that we have a mixed story to talk about, to be honest, and that JDRF is working hard to try to improve that story some more. So, what I say is: mixed. So, what are some good examples? What are some not so great?
A great example is the fact that 98%, I believe, of people who have private insurance are able to access a continuous glucose monitor now with coverage. Likewise, pumps are highly covered by the private insurers. Those are good stories, and those are stories that are very much a product of the work we did at JDRF in order to prove that there is a good business proposition for these companies to go ahead and provide coverage. In other words, that people are going to have better outcomes, and ultimately, that means the insurers are going to have to spend less on the devastating complications that would come later on as a result of worse coverage… or also on emergency room visits. Each child or person that goes to an emergency room… that costs $25,000 or so. And if we can have better, tighter control of glucose, that keeps those emergency room visits down. Then obviously, that’s saving a lot of money for the system too.
Those are some places that are good. In fact, a great victory that we had just this winter was: for a long time, Medicare was not providing coverage on continuous glucose monitors for people with type 1 diabetes. So in other words, a person who’s over 65 years old… that’s had type 1 diabetes for a long time… is highly at risk for hypoglycemia unawareness. In other words, he or she doesn’t feel the lows anymore, and that can lead to those terrible consequences. Instead, with this device, he’s able to stay aware of things. So we’re able to finally– after many years of working with Medicare and Medicaid folks at CMS– we were able to convince them to go ahead and classify continuous glucose monitors as a durable medical equipment, which, in other words, means that it’s eligible for that sort of coverage. So that was a great accomplishment. I’m very proud of that, indeed.
Derek: You mentioned insulin. Insulin pricing is a concern right now. You probably read it. It’s a big concern for our community. The list price of insulin has increased dramatically over the last, call it 15 years or so. Interestingly, the net price, the price that many people pay through their insurance providers has held reasonably flat as reported, at least. But obviously, not everybody has access to that sort of protection. So for many people, they are having to make really worrisome decisions right now in their lives about how they can help people have this essential ingredient in their lives– the insulin, and still have the rest of their lives be intact too.
We will continue to try to help people do that. We have a campaign right now called Coverage2Control where we are helping to rally this community and help the different parties, the insurance companies and others, to understand that they have an obligation to help people with type 1 diabetes do better. By the way, that in doing so, they’re actually going again to have better business outcomes too because people are going to have better health outcomes as a result of having better control.
Denver: Well, that is always the case you have to make. That’s for sure. Earlier this year, JDRF experts, you developed this first ever guidelines for safe exercise for people with type 1 diabetes. What were some of those recommendations?
Derek: That’s right. Let me start with the really basic one, which is that it’s important that people get exercise. I will tell you that many people with type 1 diabetes are warned against really strenuous exercise because their doctors or caregivers are so concerned about a catastrophic hypoglycemic event– or low sugar event– that will occur as a result of that extreme exercise.
Having watched our son who is a marathoner and whatever, I can tell you that his glucose management, while it’s challenging, he’s a much healthier guy because of the fact that he gets a lot of exercise. And we see that routinely with people who have type 1 diabetes who are getting the exercise.
So the first thing is, yes, go ahead and get that exercise. Understand how your body responds to the exercise; adjust your glucose levels accordingly; know when you need to have energy come in in the form of glucose or whatever, but get to know your body and go ahead and get that exercise that you need. Specifically, we know that people who have type 1 diabetes, when they get a lot of exercise, it’s important that they warm down as opposed to stopping abruptly. When they do that, their bodies have a more even keel with their glucose management afterward. That’s one very specific example. There are many things like that.
I was just last weekend in Wisconsin with JDRF. There were 80 riders there who rode, and most of them probably rode 100 miles that day– and with type 1 diabetes– and they were able to do it, knowing that they are managing their glucose levels all along the way. And so they can do it, and of course, it’s an inspiration to us all.
Denver: It prevents a whole host of other problems for their health that they perhaps would otherwise have if they did not exercise.
Derek: Absolutely. So, picture a Venn diagram with three circles in it. The first one is A1C– which is kind of a weighted average level measuring the blood glucose level in a person. Another circle is cholesterol level, and a third circle is blood pressure. Only 3% of people with type 1 diabetes in this country are in the good part of all three of those circles. We know that people need the exercise to help their hearts and their bodies to do better.
Denver: We talked a little bit about your advocacy efforts already, but another part of that is what you call the JDRF Children’s Congress, and you were down in Washington earlier this summer. What were some of the highlights from that?
Derek: It’s an amazing experience. One hundred and sixty kids from around the country came and were together and then had meetings with their representatives or their senators. We had hundreds of meetings that week, and then we also had a Senate hearing where senators– it was chaired by the Senate Diabetes Caucus. So you have Senator Jeanne Shaheen, Susan Collins, and others who were there.
It’s very powerful to hear the testimonies from both children with type 1 diabetes and then some parents and adults that have type 1 diabetes, all talking about the demands of type 1 and about the importance of continued research funding. So our major push while we were there was continued funding of a special diabetes program… which is a program that is up for renewal right now in Washington that would continue funding about $150 million a year through NIH funding of type 1 diabetes-related projects. It’s very important that that work continue.
Denver: Speaking of funding, there is no shortage of research opportunities that are waiting to be explored. I would imagine, Derek, that funding is a challenge, so you can pursue as many as you possibly can. What’s your funding model and your sources of revenue?
Derek: We have many. Our traditional fund-raising approach has been a lot through events. The walks and galas and the rides and the runs account for, let’s call it roughly three quarters… a little less, but it’s close to three quarters of our revenues. Corporations also donate rather significantly, and then major donors… leadership givers account for a significant portion. And then people’s estates, as they pass away, are also an important source of funding. So we have many.
I’m very excited about a new program that we started just this year called JDRF T1D Fund. It’s sort of an in-house venture capital fund that we have that is making investments in T1D-related therapies inside of corporations. This is actually something that JDRF has been doing for a while, but this fund now really shines a spotlight on this activity and is helping people who are interested in the space, I think, see that they have a chance to support JDRF in a very exciting way.
We’ve made investments in seven companies so far and activities such as artificial pancreas and encapsulation, prevention, different approaches toward biologically curing this disease, and looking at the basic immunology of the disease. As we drive that entrepreneurial space, we will take the basic research that we’ve been funding for many years, and we will bridge through the so-called valley of death, so that these companies then can get to a place where their therapies can be on a fast track toward commercialization.
We, throughout the 700 or so employees and the countless volunteers – and believe you me, volunteers are key pieces of this organization too – we focus on and understand and appreciate the importance of our mission. JDRF’s vision is very simple: A world without type 1 diabetes. And our mission statement is accelerating life-changing breakthroughs and the cure, prevention, and treatment of type 1 diabetes and its complications. That is the hallmark. That is our north star. We focus on that with every decision that we make.
Denver: That can really speed things up. That’s very, very exciting. Very innovative. I know you’re really proud of the team at JDRF and have looked to create a work environment where people are empowered and encouraged to do great work. How would you describe the corporate culture of JDRF? And is there anything that makes it special and distinctive?
Derek: How I would describe it is, I think, what makes it special, which is, it’s very much a mission-driven organization. We, throughout the 700 or so employees… and the countless volunteers – and believe you me, volunteers are key pieces of this organization too – we focus on and understand and appreciate the importance of our mission. JDRF’s vision is very simple: A world without type 1 diabetes. And our mission statement is accelerating life-changing breakthroughs and the cure, prevention, and treatment of type 1 diabetes and its complications. That is the hallmark. That is our north star. We focus on that with every decision that we make.
In order to make that happen, we have 77 chapters around the country, and we’re headquartered here in New York City. These chapters are the front line. They are out there both to help people with type 1 diabetes and their families, and then also obviously to raise funds and awareness. We here in New York, I hope, are helping them to do their jobs, and then making sure that we bring it all together in a package that is coordinated, efficient, and highly effective.
I see this community come together so strongly and be determined to help us to beat this disease. It’s a hard disease to take on alone, and I see some people who want to keep it to themselves, and I do think that’s a challenging way to live.
Denver: Sounds like you’ve done that. Let me close with this, Derek. As we discussed, type 1 diabetes is a rough disease, and not just for the person afflicted, but for the entire family. As someone who understands it– not only at the professional level but also at the personal level– what advice would you have for a person on the best way to view it, approach it, the kind of mindset that helps someone deal with it?
Derek: I would say that there’s no one approach to this disease, for sure, and it’s important that a person understands how he or she can best live with this disease. In our family’s case, obviously, we started talking about it right away, and we made this a mission for our family, for sure. And our friends and other family members have been right there along with us.
And I see that routinely. I see this community come together so strongly and be determined to help us defeat this disease. It’s a hard disease to take on alone, and I see some people who want to keep it to themselves, and I do think that’s a challenging way to live. Again, it’s not for me to say what the right way is for a person to handle this, but people should know that this community wants to support and be there for each other and help people learn the tips that will allow people to have better control and do better and get through school and pregnancy and the different stages of life. So that’s a big piece of what I would say.
The last thing I would say, if I may, is: do not strive for perfection because there’s no such thing as perfection probably in anything, and there certainly isn’t in type 1 diabetes. When I say don’t strive for perfection, I don’t want people to get hung up with it because I often say that type 1 diabetes management is sort of like trying to catch a butterfly. It’s always floating around. You think you’ve got it for a second, and then it floats, and the target is constantly moving. I see families that are sometimes so focused on trying to get everything so perfect that it can really govern their lives, and it’s tough. We need to understand that each moment is just that; it’s a moment, and we do our best from that moment forward, and we learn where we can. And then we try to stay positive and keep moving on.
Denver: Good advice. Don’t get too rigid. Stay flexible.
Denver: Well, Derek Rapp, the President and CEO of JDRF, I want to thank you so much for being here this evening. Tell us about your website, the kind of information that you have there, and how people can get involved in supporting the organization if they’re so inclined.
Derek: The website is JDRF.org. As I’ve said, we have chapters around the country, including right here in New York City. And you can easily—if you punch on the website, it will take you right to the chapter connection.
Denver: Well, thanks, Derek. It was a real pleasure to have you on the show.
Derek: Thank you, Denver.
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