A relatively new organization funded by a wealthy businessman whose son has type 1 diabetes is working to quicken the pace of research into finding a cure for type 1 diabetes. In the process, the group is seeking to redefine what curing type 1 diabetes actually means and how fast it can come about.
“There is no question that we are controversial,” says Phil Shaw, General Manager of the Juvenile Diabetes Cure Alliance. “I think to some degree we are challenging the norm. We’re saying something new. We’re saying to researchers that their research needs to be prioritized to achieve real results in the foreseeable future.”
The stated mission of the JDCA “is to direct donor contributions to the charitable organizations that most effectively fund research with the goal of delivering a type 1 Practical Cure by 2025.”
The organization’s founder, and primary funding source, Brian G. Kelly, developed this mission. Kelly is the director of Activision Blizzard, a gaming company behind such video games as Call of Duty, Spider Man, and many others. After his two-year-old son Tommy was diagnosed with type 1 diabetes, Kelly learned how to help his son manage his condition. Kelly, however, wanted to do more than just know how to administer insulin injections and test his son’s blood sugar levels. He took a look at the progress toward curing type 1 diabetes and realized that in almost every situation research was devoted to an absolute cure. He also noted that a cure was typically promised in the far off future and was not something imminent.
“When we really started to study things, we began to realize that, it’s like, ‘You know what? There isn’t going to be a cure in the next five years,’” Kelly said in an interview with The Wall Street Journal. “We started kind of peeling back the different layers of the nonprofit research world.”
The idea of a “Practical Cure” was the first paradigm shift the JDCA advocated.
Unlike what the organization calls an “Idealized Cure,” a Practical Cure means making diabetes easier to manage and live with while still minimizing or eliminating complications from the disease. The JDCA defines a Practical Cure as one that enables diabetics to live their lives with blood sugar testing once a week or less; to eat an unrestricted diet; to require only a simple regimen of medication; to sleep worry free; to experience only minimal diabetes side effects; and to experience fast recovery from surgery.
The JDCA developed these criteria by asking diabetics what they would like to see in a cure. “We asked people, ‘What would you like to see in a cure?’” Shaw says. “What we found was that people defined a cure as outcomes based and not based on a perfect reversal of the disease. They said to us, ‘Give me a chance to lead a normal life.’”
With the definition of a Practical Cure in mind, the JDCA studied how many research projects were targeted to finding a Practical Cure. What they found was not very encouraging.
“Of the 329 type 1 human clinical trials that we examined, only six have the potential to deliver a Practical Cure,” according to a JDCA report in December 2012.
The second paradigm shift advocated by the JDCA regarding the way research was funded and supported included a deadline to show results: 2025.
“2025 is the most controversial aspect of our organization,” Shaw says. “But, it’s a goal not a promise. Our goal is to provide a focus. If there is not a focus, and an urgency of a goal date, then you lose focus. If you lose your focus, you won’t come up with a cure.”
The goal date was not wholly arbitrary, Shaw says. “We looked at what was in development and we said, ‘OK. It takes eight to 16 years to go from animal testing to market. Let’s work within that framework.’ The date we propose is the end of the bubble for a wide range of projects.”
The JDCA’s approach is somewhat controversial because it focuses more on the outcomes and expediency of a research project rather than on the traditional methods of deciding which projects to fund.
“The structure now is set up is to examine each project individually on the quality of the science and not so much on its practical application,” Shaw says.
The JDCA also considers the quality of the science behind each project that promises a Practical Cure, Shaw says. But along with considering the science when deciding which projects to support, the group also adds an additional layer of consideration regarding such matters as whether the project will be applicable and on the market in the foreseeable future and whether such projects will improve the lives of diabetics in a practical sense.
“The model for this is how corporations work,” Shaw says. “We’re not advocating broadly for the corporatization of science. What we’re saying is, let’s use the best practices of the corporate world to direct how funds are invested.”
All of which begs the question, what does the JDCA do exactly to fulfill its mission?
Shaw says the JDCA advocates and influences donors to contribute to those projects that promise a Practical Cure in the foreseeable future.
To that end, the organizations monitor the state of research into a Practical Cure though reports it publishes on its website. Through these reports it informs donors seeking to support a Practical Cure which research projects best meet that criteria. For instance, on the JDCA website there is a letter donors can use when submitting their money to any organization researching type 1 diabetes that states clearly they want their donation to go specifically toward a project supporting a Practical Cure.
“We help donors write a restricted gift,” Shaw says. “We also work with lawyers who represent larger gifts on how to restrict those gifts to supporting research for a Practical Cure.”
Shaw adds that, as the JDCA has evolved they have become “more of an influencing group” than anything else.
Shaw says the JDCA is not a lobbying organization. The 501(c) 3 organization does not rely on donor contributions for support. Kelly, through his family foundation, is the sole financial backer of the JDCA, and has so far contributed more than $1 million since it was founded in 2011.”
“We want to make positive change,” Shaw says about what the JDCA does. “”We know there will be some bumps. But, it’s worth stirring things up to get things going.”
Thank you Edward, I will check out Living Cell Technologies Ltd. Its nice to read something about hope in this story, even if it was through a readers comment!
Alex, another great article. Thanks so much for this. From a patient perspective, it’s hard to see why this organization is controversial — I mean, *any* improvement would be fantastic. I personally don’t really care about the finger sticks and the injections and having a beeper tethered to my hip: I just want someone to take the WORRY out of diabetes. If there were a way for me to achieve 80-120 blood sugars all the time without having to think about it, that’s just about all the cure I would need.
Mr. Kelly,
I have two daughters with diabetes and have been at this for a long time. I highly recommend you take a look at Living Cell Technologies Ltd. out of New Zealand. They are in human trials and are closer to the goals you outlined than your target date.
Edward
I’ve long said I don’t expect a cure in my lifetime but I’d be thrilled if this was easier to live with. Just as the post says, if I didn’t have to check blood sugar all day, worry going to sleep I won’t wake up, calculate everything I do and eat all day long and suffer conditions related to T1D. How refreshing to see an org thinking in a new direction where i can hope for relief even if i never see a cure.