Working toward a better life – and a cure – for any disease is a practice in patience. We all start out hoping for some “Lorenzo’s Oil” type of situation: we push, we prod, we search and then bam we find our miraculous solution. But in reality, it’s usually quite different. I’ve discovered that in my going-on-20-years of advocating for better treatments and a cure for diabetes for my daughter and for all.
Back in 1997, when I first came involved with JDRF and dipped my toes into this “take action” thing, I imagined that by now we’d be done. I pictured storming Capitol Hill, doing a few walks and then finding out it was a wrap. It has not been that way. Instead, I’ve learned that progress is slow and not always steady. It reminds me of skiing runs in the San Juan Mountains, where everything is not always simply a ride up and run down, and instead you hit steeps that give you amazing speed and then rolls that slow you down and challenge you a bit. You’re still on your way to your destination, but it takes some extra effort and management at times to get there. Sometimes, in diabetes cure advocacy, it can feel like all you do is push along.
And then there are years like 2016.
I want to say that in all my years of fighting for this dream of making life better for people with diabetes, 2016 has been the most exciting, invigorating and encouraging of all.
It was back in 2014 that Dr. Doug Melton and his lab at Harvard University announced they had developed a method to replicate insulin-producing beta cells. Melton, in a conversation with reporters, talked, too, about the other piece of the puzzle that might enable these cells to survive Type 1 diabetes’ autoimmune attack: encapsulation. Melton’s lab teamed up with a group of scientists at MIT’s Koch Institute for Integrative Cancer Research, who for years have been working to create alginate materials that will protect beta cells while flying under the radar screen of the body’s immune system. [editor’s note: Dr. Melton has retracted his paper].
In January 2016, the encapsulation project’s lead scientist, Arturo Vegas, published a paper in Nature Medicine that showed in a mouse implanted with Melton Lab beta cells and protected by the lab’s lead alginate material, blood sugar was controlled for six months, the length of the experiment.
Of course, anyone who follows Type 1 research knows that diabetes has been cured in mice before—many times. The next step is to test the Melton Lab beta cells in primates, a process that Vegas expects will take a couple of years. Only then, and only if the encapsulation material is still a success, could the long process of human clinical trials begin. So we may be a long way off from a real cure, but progress is progress and we’ll take it.
And speaking of encapsulation, the good news just kept coming. In February 2016, the San Diego based company Viacyte announced that was merging with its competitor, Johnson & Johnson’s BetaLogics, and the two were pooling assets and intellectual property in order to push forward a stem-cell based cure for Type 1 diabetes.
Last year I got to hold an actual Viacyte encapsulation device in my hand. (It was the day before I did a 100 mile JDRF Ride to Cure through Death Valley, and the valley experienced a thousand-year rainstorm. A sign, I thought as the sandy mountains took on a color few had ever see, and the following spring wildflowers said to have been waiting decades for enough water to bloom blanketed the land. A sign, for sure). Well, patients are implanted with the devices now, and 2017 should bring us even more promising news, and hopefully a next step in clinical trials.
In the fall of 2016 came huge news: The FDA’s approval of our nation’s first hybrid closed loop system, which folks will be able to order in March. As I said when it all came down, it wasn’t that exact product that thrilled me. Rather, it was the fact that the FDA ruling would – and will—clear the path for the market to be flooded with better tools. And anyone who does not understand the beauty of better tools and more choices needs just hop in a time machine by limiting themselves to Regular, NPH and a crude meter to find out just why this matters.
Again, I take great pride in being a part of JDRF when it comes to this advancement. After all, we JDRF advocates fought for this when we were told that advocates really should not influence the FDA (but now we’ve paved the way for an FDA that listens to patient voices ). We raised funds to support clinical trials for proof and to entice companies to invest in creating products. Not everyone agreed with that push, but in 2017, everyone will benefit from it.
As 2016 wound down, the FDA announced its approval of dosing insulin off of CGMS data. This is huge. It’s huge because it will make lives easier. It’s huge because it lessens the burden for those who live with diabetes. It’s huge because it motivates industry to invest in more smart diabetes products. And it’s huge because it could pave the way to coverage of CGMS for all, something I feel passionately about. What good are great tools if all cannot access them?
Here comes 2017, and I still have a child (now adult) with Type 1 diabetes. She still has her moments and we still are in the battle. But progress has made her life better, and progress has pumped a most marvelous medicine through her veins: it’s a fully-covered by all insurance on earth medication called “hope.”
Here’s to a new year of new breakthroughs.