By: Tom Karlya
Will there be a cure for diabetes? Is an artificial pancreas a cure? Was insulin a cure? Let’s begin on the correct platform. You may have an opinion on what a cure is that completely differs from mine, and that’s okay.
My definition of a cure for diabetes is that my children will be free of all the possible complications and day-to-day worries and management that they have endured since the day they were diagnosed. I want to get back to where our lives were before they were diagnosed. I don’t care what accomplishes that, and I also don’t know how we’ll get there. If anyone tells you that they know, honestly, I believe that they are misinformed.
I have done exhaustive work to find out where we are, and I have to be completely honest with you: If someone says that a biomechanical cure is any closer than a biological one, I don’t believe it. There is no, zero, zilch proof that either will be here in three years, five years, or even ever. The key word here is “proof.” And the word “here” means that people with diabetes, kids included, are using the cure on an everyday basis. It doesn’t mean that the cure is in phase I, II, or III clinical trials, or even awaiting FDA approval. It means that it’s in everyday use. Period.
Technology can be good, but better technology to achieve better management of diabetes is not a cure. Both—I said both —are important, but they are different. It is important for the work to continue to aid advancements in both better management and a cure. Anyone out there with diabetes deserves both, and nothing short of success in both is acceptable. The one defining difference in my definition of a cure is that we are done. Nothing more is needed.
Now the question at hand is: Will there be a cure? I believe with all my heart and soul that there will be a cure for diabetes. Let me tell you why. This is not some pie-in-the-sky, dreamy-eyed approach. Having two kids with type 1 diabetes, I have been, unfortunately, at this for over 19 years. I, and many others, have heard the word “cure” so many times that it sticks in my throat. Too many have thrown it around too much over the years and at times have outright lied. Now listen to me very carefully. Please forget anything you have heard for the next few minutes and continue reading with an open mind.
There are people out there, a good handful in fact, who have type 1 and had an islet cell transplant and actually lived for a time without taking insulin shots because the islet cells were functioning.
Many, and I mean many, people have been told that islet cell transplantation failed. It didn’t. It showed that a biological means could work. Were the patients on immunosuppressants? Yes, they were. Was it a cure? No, it was not. If the islet cells had functioned without the use of immunosuppressant drugs, you bet it would have been a cure. Yes, that is a big “if,” but they functioned.
Transplantation showed that there are hurdles that need to be overcome: A plentiful supply of islet cells or another insulin-producing mechanism; a method greatly curtailing the need for immunosuppression; and the need to make sure that the body does not attack all over again—-big hurdles. But failed? No, it did not fail. In some, it worked for two years or more.
Did people think it would work forever? My answer to that is a conversation I had with Ken Bernstein, a conversation that will stay burned in my mind forever. I was speaking to Ken a few months after he received an islet transplant. I said to him that he must feel great. “Tom, I do feel great,” he said, and a huge smile came across his face. “But I didn’t do this for me. I did this for Kaitlyn (my daughter) and those like her. Do you know how much we will learn through this? This is but a step.”
In my car that night, my body shook as I cried. Ken and everyone who received an islet cell transplant are incredible heroes. “This is but a step.”
With so much happening in various cell replacement strategies and genetic manipulation, engineering, and all around examination, I do believe a breakthrough will occur. I have also toured the Diabetes Research Institute (DRI). Now it’s no secret that I work for the DRI, but let’s be very clear about this; I work there because I believe in it. If someone showed me some place better, I would be gone in a New York minute. Those who know me know that I have done it before. This is not just my job. This is my life.
I am familiar to many because of my involvement in the diabetes online community (DOC). (Much of this article, in fair disclosure, I wrote for my column at dLife.) I have, since my early days with Children With Diabetes, been known as the Diabetes Dad. Because of my DOC involvement, I read many people’s writings, and I am often amazed at their insistence not to hear anyone else’s opinion. Sharing begins with discussions. Education begins with questioning.
Let me tell you what you will find at the DRI and why I encourage you to see it firsthand. When you tour the DRI, you’ll see the dedication and the passion of the scientists. You can feel the drive and the single focus on curing diabetes. The collaboration is second to none. All three stages of research–basic, preclinical, and clinical–are happening in one building. The research moves up the ladder, or it moves out.
Finding a cure is as much about philosophy as it is about breakthrough. It’s about collaboration. Why would anyone support a project in which the researchers are not willing to share their findings? It makes no sense. If you do not sign, literally, that you are willing to share your findings with your DRI colleagues and with others in the scientific community, then you do not work at the DRI.
Why is it that the JDRF, the ADA, the NIH, and so many other organizations and private donors fund the work of the DRI? I’ll tell you why. It’s because the research is that good, that strong, that collaborative, and surely worthy of a closer look. The researchers are awarded grants based on the merit of their work. The DRI is the main reason I believe that there will be a cure in my children’s lifetime. It is what happens within those walls that gives me the hope at which my heart clutches.
I assure you of this: Anyone who is hoping for a cure should come and tour the DRI. Not because you should give a donation, not because you should run an event, and not even because you should be active. But in this day and age, when it is suggested by so many that the flame of a cure is diminishing, you should tour the DRI because you will touch hope. You owe it to yourself and whomever is the reason that you are in this battle.
Those involved with supporting the DRI, staff and volunteer alike, are not frowned upon should they challenge and question our scientists. Instead, it is encouraged. For it is only through questioning that one can open up to learn. Dr. Camillo Ricordi and Foundation President Bob Pearlman (yes, he is my boss) are constantly thinking and inquiring about how to move all of the processes for a cure forward, and they entertain contributions from anyone who has an idea. Nothing is off the table.
I’m furious that so many have given up hope for a cure. I do not care the reason. No one should be told anything other than that this fight will not stop until one hundred percent effort is given to a cure. No one should be told so many broken promises that it breaks their spirit. No one should have their spirit broken so many times that they just do not believe it anymore. If anything, more needs to be done, not less. And it should be done now, not tomorrow when the economy gets better. Diabetes does not care about the economy, remember that always. It is the dollars of philanthropy that will fund fabulous ideas.
The DRI opened its doors for one reason, and that focus has not changed one iota, ever. And that is the way it will be until they are closed for good because the job is done. Diabetes is a war. I do not care how many battles it takes, and I have no time to hear rhetoric. I have heard it all before. I, and so many others who are part of the DRI, are in it to end it.
So if your spirit has been broken or you have become jaded because of the years you have been battling diabetes as a parent or a person with diabetes, stop by the DRI and touch the reality of hope. No matter the odds or what people say, I will continue working, searching, and learning, because this war will be fought until the job is done. There will be a cure. I owe that belief to my kids, and I believe it now more than ever. I am a diabetes dad.