Editor’s Note: Allison Blass, my new assistant editor, was moved by what she heard and saw at the JDRF Research Summit last weekend and what she read thereafter. But maybe not in the way you’d think…
I remember when I stopped believing that I would see a cure for diabetes.
It was a spring afternoon when I was in college. I was sitting on the back deck of this coffee shop I frequented. It was a covered deck, you see, and so you could enjoy the somewhat warm weather of an Oregon spring day without risking being in the wrong place at the wrong time when a raincloud passed over campus. I could sit there for hours, drink coffee, chat with my friends, pretend to study. It was on one of these days that I was sitting in an uncomfortable plastic chair, glued to the pages of James Hirsch’s Cheating Destiny. I actually don’t have a copy of the book with me (it’s safely tucked away in storage), but what I do remember is reading about his discussions with researchers and how he learned just how complicated diabetes is, and just how much researchers felt they didn’t understand. Tears began streaming down my face. In those moments, the cure shifted from a tangible dream to a distant hope.
Losing faith in something you’ve believed for so long is traumatic. There is utter shock. Complete disbelief. You argue that it couldn’t possibly be true and you present a laundry list of perfectly logical reasons why this cannot be so. The people delivering this horrid news are people you are supposed to trust, and they have taken something precious away from you. There is some anger at being fooled for so long, and then a resignation, and a hollowness. A void you’re unsure how to fill. What is my motivation?
Earlier this week, I read the diaTribe’s interview with Jeffrey Brewer, the president and CEO of the Juvenile Diabetes Research Foundation, an organization that I have raised several thousand dollars for over the last 17 years. I had also attended a JDRF Research Summit over the weekend, where the most exciting breakthroughs, it seemed, were coming from the artificial pancreas. A tool. Another tool. At first, I merely skimmed Jeffrey’s interview with Kelly Close and Co. I didn’t really give much thought to it.
Then I saw this thread on Tom Karlya’s Facebook wall. Isn’t Facebook where the most interesting debates are happening these days? I knew Tom worked for a competing organization, the Diabetes Research Institute, and so I was curious to see what he had to say, but he said nothing. He merely opened up the conversation. Many parents were angry with this article. Many of them were upset that JDRF was moving away from the “cure” and that they were going to be more focused on adults and technologies for living with diabetes. No more priority on the cure? You might as well have told them that JDRF was disbanding and that all the remaining money was being funneled into scholarships for clown college.
At first, I was confused. I didn’t understand how people could be so upset with JDRF’s decision. Well, that’s not entirely true. I know a lot of people who don’t like the things JDRF does, and sometimes I get it and other times I think they’re making a big deal out of nothing. But these people seemed to have at least some respect for JDRF. So why the sudden change? Mostly it because Mr. Brewer said this:
“The first very big transition is we’re moving away from the over reliance on the cure as the central part of our message and funding.”
Of course, he quickly followed up with: “This does not mean JDRF is any less committed in its focus to find a cure, but we have some work to do in order to get there. And in the meantime, there are many people who will live with diabetes for a relatively long period of time. We have a responsibility and an opportunity to help them live better, healthier, longer, and less stressful lives. And so one of the big changes that we’re undergoing is focusing on improving the lives of people living with diabetes on a day-to-day basis.”
Several parents on forums that I’ve read have said that JDRF’s mission was always for a “cure.” And they’re right. That is always what they said. But you want to know something? Things change! In the decades since JDRF was founded and that mission statement was created, we have learned more and more about how diabetes works. One thing we have also discovered is just how much we don’t know. We’ve learned just how damn complicated and unwieldy this disease can be. When information is learned, goals are modified. New strategies and tactics are implemented. The cure has not been erased from ambitions, but there have been additions made. Some people might think that the cure is getting farther and farther out of grasp. The truth is that it has always been far from our reach. The problem was that we had no idea how far. We didn’t even have the map! Now we’re starting to plod along and get our bearings. So yes, the cure is very far away because now we know just how far we have to go.
One father told me that if a cure is found, then all the money spent on new technology will have been completely wasted. He might be right. If I had a crystal ball, I could know for sure which direction to go. But I don’t. None of us knows when a cure is coming. None of us knows what future lies in front of us. No researcher should ever promise a deadline, because they have been wrong time and again. I don’t know if you should exclusively fund raise for JDRF. Or if you should only fund raise for DRI or Faustman or Joslin or whomever. I don’t know who has the answer. Personally, I try to give as much money as I can to as many organizations as I can. If you don’t like the idea of giving your money to an organization that isn’t fully dedicated to finding a cure, that’s fine. Don’t let anyone tell you otherwise. But I will add that not everyone has the same confidence as you. You can count yourself among the lucky.
What I do know is that I want to play with my children someday without having to be the one to stop and get a juice box. What I want is for my fiancé to not worry about whether or not I will wake up in the morning. What I want is for my eyes to stay clear and my heart to beat strong and my legs to carry me to the far reaches of the world. Some may say that technology is “good enough” now, but do you really want to stay exactly as we are today? Are you really satisfied with the accuracy of your glucose meter, of your continuous glucose monitor? Are you really satisfied with the functionality of your insulin pump? Are you really OK with spiking after breakfast? Are you really fine with wondering if your body will wake you up when your BG is too low or if you will sleep through your CGM alarm? Wouldn’t it be nice if there were just a few more improvements to our lives?
I know that all this technology will, at the end of the day, benefit Big Pharma. And I get that they may be seen as “evil” because they make money off of us being sick. But I don’t really see another way around it. I wish I knew why JDRF has to give money to Pharma in order to get them to do things for us patients, but apparently that’s how it works. Maybe someone can leave a comment and explain it. What I do know is that Big Pharma, so far, has saved my life. Yes, they make a profit off it and yes, the whole price thing and insurance thing and healthcare reform thing suck (but that’s another story) and yes, they are a little slow on the uptake when it comes to changes they need to make to their products (I’m looking at you, Minimed). But they are the ones who make what we need to stay alive. Without them, we’re sunk. And no, I don’t believe they are trying to keep a cure from us, because seriously…? A cure is not coming for free. Someone will be making a pretty penny off whatever they come up with.
Listen, I get it. You’re a parent. Your No. 1 concern is to end the suffering of your child. If I were a mother of a child with diabetes, I would probably feel the exact same way. It is heartbreaking to watch a child having to prick their finger or wear an insulin pump that’s as big as their head. Nevertheless, not all of us have the same faith as you. Some of us just can’t believe that a cure is around the corner. We try. Trust me, we try. There are moments of anger and frustration and I just want to scream and throw my glucose meter against the wall so hard that it shatters. Sometimes I dream about the day that I won’t have diabetes anymore, when the only reason I go onto Twitter is to talk about the latest Hollywood blockbuster or find out what’s happening in the world. I dream about not rolling over onto my insulin pump when I’m doing crunches at the gym. I pray that my children will never, ever have to save me.
But I just don’t think that day will come in my lifetime. And to the people who agree with me, the people who say, “I don’t know if I believe anymore either,” then at least we know someone understands. I want a cure so badly it hurts, but I also know that I may never see it. The weight of diabetes, the weight of doing this on my own, everyday, forever, is almost more than I can bear sometimes. I don’t want to do this anymore. I need help. I don’t know what that help will look like. But if that’s in the automation of an artificial pancreas or a pill that I take everyday to jumpstart my beta cells or something else entirely, then I fully support it.
I want a cure and a better life today. The two do not have to be mutually exclusive.