On the news the other night there was a piece about an amazing new “ice cap” that might just stop cancer patients from losing their hair. A doctor talked about it and said “I know it’s not a cure, but … it’s life-changing.” Then a patient said not losing her hair the second time around changed her entire cancer experience. It got me thinking about the debate on “Cure” in the diabetes world now. Here’s my take.
There’s a petition being circulated in the diabetes world. It’s asking the JDRF and the ADA to allocate more donated funds to what they call “cure research.” To support it, they use semantics in defining “cure.” And really, we all have our own definition, and that’s totally okay.
I want to address why I won’t be signing this petition, why I feel funding research for more than a cure as I define a cure is not only correct but also humane, and why I’m proud as all heck to stand up and yell “I am JDRF.”
I premise it with this: I want a cure for my daughter with Type 1 diabetes more than anything else in life. I’ve dedicated myself to that from nearly the time she was diagnosed (almost 18 years ago! Where does the time go?). We were a passionate walk family (one of the largest walk teams in the nation), determined advocates (we won over more than a few top national leaders more than once and brought them over to JDRF support) and caring volunteers. Today, I am a JDRF Rider, having raised close to $100,000 since starting riding three years ago. My daughter is a JDRF Rider now too – raising $7k her first ride season (not bad for a 23-year-old). She also volunteers constantly in her free time, helping with all kinds of things. Since 1997, I estimate we have raised and donated close to a million dollars for JDRF and it’s priorities. This all has been done because I. Want. A. Cure. And I want it NOW. And for the record, for me, a cure is living a life completely diabetes free, with the body doing the work. Got that?
But that passion and that yes sometimes desperate need for a cure is not an all-or-nothing venture.
Because listen: every single time my daughter’s life improves even incrementally, I call that victory. In fact, I call it life saving. And while saving a life and extending a life and making a life simpler and yes – happier – is not “curing” diabetes, it sure as heck is worthwhile to the max.
It’s not hyperbole to say that my child’s life with diabetes – as difficult and demanding and endless and yes sometimes just plain sh*tty as it is – looks nothing like a life with diabetes did even just 25 years ago. Heck, it looks almost nothing like it did when she was diagnosed. Fifty years ago, we might be expecting that Lauren would be at the end stages of her life right now. Eighteen years was a long time to live with diabetes back when we didn’t have the tools or medications we have today. Imagine that: my vibrant, take-on-the-world, hard-working young woman daughter who dreams of changing the world in DC and just might – might be nearing the end of her life. What she is beginning could be ending. So while no, she is not cured yet in any way at all, she certainly is improved.
And you know, sometimes “life well lived” – only for moments perhaps – can feel “cure-like.”
Like the day way back in 2006 we were driving along in the car. Lauren was 15, and had just become one of the first kids in America to go on a CGM. She didn’t particularly love wearing a second device on her body, but we could see how well it worked. Seeing her blood sugars in nearly real-time without added finger pricks was incredible. I thought that was the beauty – tighter control with less invasion. And the, out of nowhere, she showed me the beauty of progress. Staring down at her hands, she burst out laughing and said this:
“Mom! My fingertips! I’ve never seen them not covered in calluses! “
My heart soared. My heart soared over my kid seeing her fingertips not chewed up and ugly from 8 to 12 finger pokes a day. How about that? In that moment, since I knew first hand that JDRF was hugely responsible for bringing CGM to the public and would be involved in making them smaller, better, more accessible to all, I thanked the good lord for the gazillion people who had donated to our walk and our gala over the years. Her fingertips were cured of calluses. How about that?
A few years before that, Lauren became the first young kid in our state to go on an insulin pump. Now remember, this was before the insulins of today existed. This was when a kid had to eat almost the same thing at exactly the same time every day and had very little ability to sway from that. 10 a.m. meant snack – no ifs, ands or butts. It was so important that my entire beach club would yell out at 10 and at 2 “Lauren? Snack!” It was a rigid and difficult way to live. So the day Lauren went on a pump was a big deal. I kept thinking of all she COULD eat on it and how she could eat it RIGHT THEN if she wanted to. So she got on her pump and I said, “Okay Lauren. It does not matter what times it is – what do you want to eat? You can have ANYTHING!!” And she said this:
“Mom? I don’t want to eat anything! For as long as I can remember I have had to eat and had to eat and had to eat. So here is what I want: I want to NOT eat!”
And for hours that day, my little girl who had lived this regimented, demanding and annoying life was free. Free of meal plans and free of watching the clock. Free at 10 a.m. and free at 2. She was cured of that regimented schedule. How about that?
Lauren struggled in her teen years, in a mighty and frightening way. We’ve never been ashamed to admit it and discuss it because burn out is real. If she had been a teen 20 years ago (or even maybe 15), there is a very good chance her rocky times may have done damage to her kidneys, to the point of needing a transplant or – gosh help us – worse. But thanks to JDRF research and progress, she was put on oral medication to protect her kidneys through that terrible time. Two years ago her endo came out of her appointment (I still go, just go to out to lunch and shopping with her after!) and held up her labs to me. Usually a pretty stoic (but awesome) guy, he was gleeful. I looked at him holding them up to me and said ‘what?” To which he responded:
“These are the labs of a non-diabetic person!”
In other words, my child made it through a terrible time with no damage. The high chance of complications at this time were … cured. How about that?
There are more instances, but instead I want to dream of the future. Because while I WANT a REAL CURE and I will never stop working for it, there are other things I want too. Such as:
–My daughter to be able to go through a pregnancy some day without her spouse having to wake up literally every hour for a year to check her to keep her in a tight, tight range. An artificial pancreas is not a cure in any way for me, but it is a cure for the terrible toll working toward having a baby takes on a life in general.
–My daughter to walk down the aisle on her wedding day (before the baby, okay?) without even thinking about diabetes. Smart insulin or encapsulation can and will do that.
–My family to be able to work toward a cure without worrying every single day about daily living for our child. Even better tools will cure us of that.
Look – nothing about diabetes is easy and nothing is good. It’s a beast that’s hard to tame (impossible sometimes). It needs to be cured, and never, ever should be stop funding that.
So here is why I am so proud to say #IAmJDRF. While JDRF’s main message (and yes—the vast majority of annual research funded) is for that biological cure that is so hard to get to, JDRF has long understood the importance of funding a better life now. I was lucky enough to have known Carol Lurie, one of the founders of JDRF, well. And one day at a meeting she lit into the research department, reminding them that when she founded this organization, it was with the hope and a dream of a cure, but it was also out of a desperate desire to improve her child’s life. She reminded them to keep doing just that while working for the cure. I loved that woman. She understood that even with razor-sharp focus on a supreme goal, it’s important to find, make real and celebrate the smaller victories along the way.
Want more funding to go to biological research? I implore you not to ask that this be done by stopping or cutting back research that changes our loved ones lives for the better.
Instead of signing a petition, form a walk team. Do a ride (I’ll help you! Just ask me). Donate. Sign up for a clinical trial. Increase the amount of funding going to ALL research and we’ll see all research improve. And you know what? I respect every individual’s decision to fundraise for or donate to what works for them. Love an individual researcher? Totally cool. Passionate about school rights and access? Good lord, we need that too. Want to cast a wider net through a research org? Rock on. But listen: we all need to understand that every position on our team needs to not only play well, but play with teamwork and respect. Let’s stop the division and unite as a team.