Saturday, September 28, 2013

Until the Cure

Diabetes is Goliath, and researchers often feel like David. How are we ever going to take down such a huge opponent? Where is the cure?

I want those researchers to focus on the cure. But I also support work that looks into how we can live well alongside the beast that is diabetes.

But I have been seeing a lot of angry comments swirling around the internet regarding support of non-cure based research, especially pertaining to the artificial pancreas.
"We don't want another fancy pump! We want a cure!"
"The artificial pancreas is just another money-making device for big pharma! We want a cure!"

I understand. I have had diabetes for 20 years and would give anything to not have it. I would be delighted to be "out of a job" in caring for kids with Type I. There are few other wishes I use on birthday candles and fallen eyelashes.

But I still have a hard time fully sympathizing with those sentiments.

I gave a lecture this past week to first year medical students. They wanted to learn about the dual-hormone artificial pancreas, but starting there would be like picking up a book and reading the second to last chapter first. I had to start from the beginning to help them really appreciate how significant the artificial pancreas will be.

We went over how doctors did not even know that a lack of insulin was what caused diabetes for the 3,500 years it was recognized as an illness. How people died within a year of diagnosis from starvation until Drs. Banting and Best discovered how to effectively use insulin. How the insulin had to be drawn into glass syringes that had to be sterilized with heat and how the very long, very thick needles had to be hand-sharpened each day. And about how the insulin came from animals, which created a series of side-effects in many patients until human insulin was able to be synthesized. And once we had human insulin, things improved again with fast-acting Humalog/Novolog and long-acting Lantus. Insulin pumps were invented and refined year after year.
We also discussed how the measure of insulin's effectiveness could only be examined through urine, then through cumbersome blood tests, and ultimately with the advent of continuous glucose monitoring.

We have made such amazing strides in the last 90 years, but mostly rapidly within the last 30 years. Lantus came out when I was in high school and completely changed my quality of life -- no more rigid time schedules, no more inflexible meal plans. I felt like my day wasn't dictated by diabetes in nearly the same way it had been for so many years. And when pump technology improved, it changed my life for the better tenfold. And my CGM is the only reason I have been able to maintain the tight control that I'm in now.

It is hard to appreciate how far we've come when all you have known is pumps and CGGs. All of these advancements were only possible through research - in petri dishes, in animals, in humans. Research gave us these gifts.

The development of refined insulin saved millions of lives. But what if we had stopped there and only focused on the cure? We wouldn't have any of the amazing products that help us live well with diabetes today.

The artificial pancreas is going to be the next big life-changer. The preliminary data is astounding, with Dr. Damiano's study giving trial patients projected A1Cs of 6.3% with less work than they put into their diabetes now. Why would we not support this? Researchers are devoting their lives to this work and many have children and other family members with Type 1 Diabetes. They hunger for the cure, too. But they hope to make life with diabetes better in the meantime.

People often mistakenly believe that supporting non-cure based research detracts from finding the cure. There are armies of researchers trying to realize hundreds of different possibilities. Projects are taking place simultaneously all over the world to treat, prevent, AND cure diabetes.

Shouldn't we continue to tackle this beast from all angles? My answer to that question will always be yes.

And in this way, we'll eventually take it down.

6 comments:

  1. I for one am so thankful that they never stopped improving care while searching for a cure. We love our pump, CGM and rapid-acting insulin and everything these tools allow us to do. Even though Elise was only dx'd a few years ago, we used NPH because it was the only "long-ish acting" insulin you could dilute (her initial dose was .5 of a unit of U20, once a day). I can't imagine living life that way anymore now that we're pumping.

    I agree 100%!

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  2. Personally, I am all for the coming dual hormone artificial pancreases, and possible future systems that might include symlin, c-peptides, and other hormones.
    I would rather see a cure, and that is what I have always hoped the JDRF was working for.
    The difference between all of the ongoing treatments, like the artificial pancreas, and a cure, is that there is enough financial incentive for medical device companies to work on these things. There is obviously a lot of profit to be made there, year after year.
    A cure would destroy the diabetes management industry, and that's why the work for a cure has to exist outside of that industry.
    Like most people with diabetes, I am in favor of both the cure and the treatment. I want to see continuing work on both. It is not an either/or situation.
    What some of us vigorously oppose is the idea that the next generation of diabetes management technology is a "cure."
    Insulin is not a cure. The artificial pancreas is not a cure.

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  3. I'm in both camps simultaneously: I love the artificial pancreas project because it is so promising. At the same time, there are so many people in the world who can't afford to use insulin pumps or CGMs that I get almost enraged because they are so expensive for something so beneficial. I'm scared of how expensive it will be. I know that when a cure comes out, it will be expensive. It will take years and years to roll out enough of whatever the cure is, and even then there will still be people who have to purchase Novolin N and R at Walmart just to stay alive.

    I fully believe there will be plenty of money to be made when the cure comes out. I'm sure there will be many, many follow up appointments and treatments. We will probably still need to monitor ourselves to make sure things are working.

    I feel like there is a lot of money from the non-profits (like JDRF) going into the artificial pancreas. On the other hand, it probably just looks that way because the artificial pancreas is a very tangible step forward. All the cure researchers can say is "maybe in 50-10 years," but we've heard that so much it's a joke now.

    All in all, this post is a cogent reminder that it's easy to get frustrated when it looks like nobody is trying to cure us. Thank you for that.

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  4. A little part of me wants to believe in the cure. I really do.

    The much larger realistic part of me doesn't believe it is going to happen for a long time, if at all. I am not holding my breath - that much is certain.

    I am, however, very grateful for the amount of research that is being put into improving how we treat and manage diabetes. Those things have a direct impact on our quality of life and on our health right now. Onward with the artificial pancreas I say! Onward with improved glucose monitoring, better insulins, better pumps!

    And if there is a cure at the end of the rainbow - all the better.

    It is the improved treatments and technologies that are going to keep me healthy long enough to perhaps, one day, see the cure.

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  5. well said. even in my 6 years with diabetes I have seen giant improvements, going from R and N to analogs and incorporating a cgm. I'm even excited to try out pumping to see how I like it. I think all well-designed research projects deserve finding. IMO "cure-focused" research with respect to T1D is still in its infancy because we don't fully understand all the mechanistic details of T1D onset and progression. At the same time our ability to quickly screen factors that are involved in this disease has been improving exponentially (i.e. biochemical assays that would take days per sample 10 years ago can now be done for thousands of samples on a single microchip). These kinds of advancements make a lot more possible more quickly in all kinds of research including cancer and diabetes... I think the next 20 years will be revolutionary in both improvements to diabetes care as well as understanding more and more of the molecular links that may allow for preventative solutions, as well as, eventually (undoubtedly) a "cure"..

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  6. This is a great post. Honestly, in the past I've been upset that at times it seems like the focus has been on the artificial pancreas and not the cure but your post definitely put it into perspective for me.

    Thanks!

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