It feels late. I’ve slept through five snoozes of my alarm clock. I can’t seem to muster up the energy to push myself out of bed. The beeping of a large vehicle outside our Brooklyn apartment isn’t helping.I haven’t been run over by a truck. But by a hypo in the middle of the night that left me scared, exhausted, and the bed sheets soaked with sweat. My husband, Guy, was there to treat my hypo, or low blood sugar, with juice at 3 AM. But the next morning, I’m depleted.
This is unfortunately an all too common experience for those of us who live with diabetes, especially type 1 diabetes (T1D). I’ve had T1D for 23 years. It wasn’t my first nighttime hypo. And it won’t be my last. But what came out of this experience was pretty profound.
Later that morning, Guy looked at me and said, “We should make a film about diabetes.” At first I resisted. I was ambivalent about this disease – I can pass as normal, so why make a big deal out of it? But it is a big deal. We did some research. Every six seconds someone dies from diabetes. Diabetes kills more Americans than breast cancer and AIDS combined.
Yet there has not been a major film about this disease. What?! Really… Why not? After two years of being in the trenches making our film, The Human Trial, I have a better understanding of why. Our disease is invisible. Our disease isn’t considered fatal. Our disease can be managed (albeit at a very high price). The resounding message? Our disease isn’t worthy of big screen attention. Maybe if we walked around with IV drips that gave us insulin, and not gadgets that keep getting smaller and less visible, the public might care more about the disease. Guy and I realized that a film had to be made. And with our documentary background we seemed like the right people to do it.
Fast forward to August 2014. We are halfway through filming our documentary feature about the quest to cure type 1 diabetes. Despite the many stumbling blocks, we’ve gained access to three great labs run by tenacious researchers who want to see their biological cure reach the finish line. One of the researchers we’re profiling has a sign on his desk – “If it works, it will change the world.”
The cost of taking an FDA-approved drug to market is $5.8 billion, and the first step in that process is getting to clinical trials. Passion and perseverance are poured into these efforts. It’s very rare to get behind-the-scenes access to labs that are raising hundreds of millions of dollars to get to clinical trials. There is so much at stake.
The fact that I struggle with my own diabetes just strengthens my resolve to get this film made. I spend close to $25,000 per year to keep the long-term complications of this disease at bay. These complications include blindness, renal failure, amputation and stroke. This seemingly simple metabolic disorder wreaks havoc on your organs, and takes 12-18 years off your life on average. And I’m lucky. I have access to good doctors and I use the latest diabetes technology to manage my blood sugar. Most people don’t have the level of care that I do, and the statistics are staggering.
Guy and I see the film as an extraordinary opportunity to not only put a face on diabetes but to shine a light on what it takes to push medical innovation forward.