My thoughts on JDRF and the “c” word…

 

Catch me if I fall
I’m losing hold
I can’t just carry on this way
And every time
I turn away
Lose another blind game
The idea of perfection holds me
Suddenly I see you change
Everything at once
The same
But the mountain never moves
-The Cure

There are a lot of things that have been spinning around in my head for a while now that I’ve finally decided to actually write about. These thoughts have been fueled by a lot of things in recent months. It all really started with the inpatient artificial pancreas trial that I participated in a few months ago, which happened to coincide with the FDA Artificial Pancreas Workshop and lots of discussions that followed amongst members of the diabetes online community. These thoughts have certainly resurfaced because of the recent JDRF Research Summit held by the Capitol Chapter of JDRF and because of a recent Children with Diabetes forum discussion about the new President and CEO of JDRF. I don’t want to get into what was said in that thread in particular or my opinions on what people had to say. I just wanted to start out this post out with some background information that might make it easier to understand where I’m coming from and why I’m even writing this. I’m sorry if it comes off mostly as rambling, I’ve had a lot in my head and getting it out feels fantastic!

First off, I just want to say that I think an important role of JDRF is to stand up for ME and the entire diabetes community and represent us when addressing the government and society as a whole. Nothing made me want to devote my time and money more to JDRF than seeing Dr. Aaron Kowalski stand up at the FDA workshop and passionately confront them about why people in other countries have access to life saving technology and we do not. He was speaking for us with conviction and most importantly with the credentials to be taken seriously by the people who are making these types of decisions. I want my money to go to and organization like that. I am also very grateful to JDRF for allocating money to studies that would prove the efficacy, safety, and need for Continuous Glucose Monitoring so that more insurance companies would cover it for more people. It’s just another example of JDRF making sure that we are being heard and getting what we need to live successfully with diabetes.

I guess there aren’t many people out there anymore who remember the days of JDF. Ya know, before that pesky “R” was added to the acronym.  When I was a kid, the Juvenile Diabetes Foundation was not just for research. It always had a lot to do with research, but it also was about support. I know that my local chapter was founded because parents of children with diabetes and adults with diabetes needed a place to share experiences and meet others dealing with the same issues. They even had a social events committee!  My diabetes camp was actually founded because of funds allocated to that committee. When I was diagnosed in 1989 my family was very involved in JDF and in camp. We raised money for the walk every year, and we attended many events. However, once that “Research” word was thrown into the mix, my camp was sold and social events were no longer held. This, along with my increasing age, is what really drew me away from JDRF many years ago. It wasn’t until recently that I’ve gotten more involved again because of a lot of the changes that have been happening to take JDRF back to what it was originally. I love that they are reaching out to more people. I love that they realize how important outreach is to the community. I am really excited about the vision of JDRF’s new president, and I think it’s a great step forward to helping more people.

That being said, I’d like to address a few things that people seem to have a problem with in terms of JDRF, what they fund, and the elusive cure. I’ve heard/read many complaints about specific types of research that is going on and I would like to share my thoughts on them.

Anyone who is familiar with research that is going on right now and how the research and approval processes work, is acutely aware that we are nowhere near a cure right now. Honestly, it’s been quite awhile since I’ve even heard someone at JDRF say that we were 5-10 years away from an actual cure. And that is because no one has a clue how close we are to a cure. Researchers are constantly finding interesting ways to cure diabetes in mice, but none of them have ever really come close to working in humans. I really think that JDRF has become much more honest with its donors recently about this topic. I think it took them awhile to really get to a position where they even believed it themselves. This why the new President wants to shift the focus of what is happening at JDRF to include more things that can happen UNTIL there is a cure. It was mentioned several times at the Research Summit that diabetes is not simple, it’s not easy, it is complex, and it may not even be a single disease.

Something that was also discussed a lot at the Summit was preventing diabetes, and I’ve heard a lot of complaints about why JDRF should support people who don’t even HAVE diabetes yet. But this is actually important to all of us. Not just because we don’t want our children to become diabetes, but also because preventing it means answering one really big question. WHY? Why does diabetes happen? If we knew why it happened, and knew how to stop it, we’d be a huge step forward in reversing it as well. It seems that the major obstacle of making islet cell transplantation and stem cell research legitimate forms of treatment is that the immune system of someone with type 1 diabetes will usually attack those insulin-producing cells again. If researchers were able to turn off the autoimmune response in someone who would otherwise become type 1 diabetic, they might be able to turn off the same response in someone who is already type 1. There have even been studies that show that it could be possible to simply regenerate your own islet cells once that response is turned off.  Essentially, being able to prevent diabetes also means CURING diabetes.

I don’t think it’s a secret to anyone that I’m a big fan of the artificial pancreas project. I’ve seen a lot of people recently (and not so recently I suppose) who are frustrated with the JDRF for funding the Artificial Pancreas Project, and even more specifically some people who are upset about JDRF’s partnership with Dexcom and Animas. I think there’s a lot of confusion about this partnership and how the artificial pancreas project is actually working and what it’s purpose is.

JDRF is not just dumping money into private companies to help them make something they are going to make and sell anyway. One of the important roles of JDRF in this process is to coordinate research between different entities. Right now there are several sites doing research to find a predictive algorithm that would work in an artificial pancreas. They are each a little different. For example, Massachusetts General is working on a bi-hormonal device that uses glucagon along with insulin to prevent and treat low blood sugars. Meanwhile, at the University of Virginia (where I have participated as a subject) they are studying an algorithm using a low suspension technique, which only uses decreases in insulin doses and basals to prevent low blood sugar. These test sites have different techniques and tests but they are all testing an algorithm, which will do basically the same thing: dose insulin based on CGM data to obtain tighter glycemic control. They all also use different kinds of equipment all that is currently on the market in conjunction with a computer that contains their specific algorithm. For example, the inpatient study I participated in at UVA used a Dexcom 7 CGMS to measure my blood sugar, which was sent to the computer, and an older version of the Omnipod PDM to deliver the doses of insulin recommended by the computer. So, all they are testing at these hospitals is the algorithm. JDRF has teamed up with Dexcom and Animas to try to develop a device that would be able to effectively contain all the components of an artificial pancreas: CGM, algorithm, and pump. It is an important aspect of development in creating a useable device that will be available to the public.

What I want for the future of treatment is for any device that will be able to relieve of us of the hardest parts of living with diabetes. What most people don’t understand is that the needles, pricks, tubes, and machines are definitely NOT the hardest part. I’ve blogged about this before, but I can never say it enough. The hardest part of diabetes is the fear. It’s being afraid to fall asleep and not wake up. It’s being afraid that every little mg/dL point over normal is one tiny step closer to debilitating complications. I can deal with the rest. I’m pretty sure anyone could if they had to. It’s the fear and frustration that makes diabetes so hard to live with.

I wouldn’t say that I have lost faith in finding a cure. I hope everyday for a true 100% cure will happen in my lifetime. But, I’ve known so many people now that had that same hope and did not live to see it. I’ve come to accept that it might not happen… that I don’t NEED it to happen. I DO NOT NEED A CURE FOR DIABETES. What I need is my feet, my heart, my eyes, and my kidneys. I need to live a long, healthy life. I will support whatever cause I think will make that happen. Right now, I whole-heartedly believe in the Artificial Pancreas Project, the JDRF, and the hundreds of people who are working hard to research and make tighter glycemic control a reality for those of us who are living with type 1 diabetes.

It really pains to think about the people I’ve known who fought so hard against this disease and fought so hard for better treatments and better lives and who are no longer here because those treatments never came. Those people are why I’m fighting for MORE than a cure!

In memory of… Nikki, Barry, and Cynthia.

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10 Responses to My thoughts on JDRF and the “c” word…

  1. Kerri. says:

    I remember when it was just “JDF,” too. :)

    Great post.

  2. Awesome post! I wish JDF had been more prominant in Canada when I was a young child with diabetes (60’s-70’s) – silly border crossing with our countries – poo! paa! Like you, a cure is always my hope for future diabetics, but the research that is done now, that has improved how I now deal with my diabetes (pump, home testing of blood sugars, CGMS, better insulins) is all possible because of research done by JDRF and other organisations. I am glad I’m alive – and without any serious complications from diabetes after over 40+ years – and hope the same applies for the next 40 years that I’m here on our big blue marble (and still hopefully part of the great D-OC).

  3. Very well said Colleen. I think we can learn so much from so many different approaches. I’m glad there are many different groups working on many different angles.

  4. Great post, Colleen. As another one who grew up with it being the JDF and having a mom diagnosed long before the organization was even founded, it’s interesting to see the evolution and progression. I am also very excited about the focus shift, particularly being one who’s been one of those “forgotten” by the JDRF once I became an adult. I haven’t felt represented by them, until more recently. I see this shift as a very positive development. Thanks for sharing your thoughts on it.

  5. Kathy says:

    This is a very inspiring post. I just need to ask a question and then add my two cents.

    I had an Animas pump and a Dexcom for years. I loved both of them and believed that they really helped me to control my BGs, especially the CGM. But, I never felt that the CGM was reliable enough to be able to trust it to directly decide how much insulin I needed, as is the premise of the Artificial Pancreas. I think this project makes sense on paper, but not in vivo. I don’t think its possible to have a mechanical pancreas. My question is, do you? And if so, why? I haven’t used either of these for over 2 1/2 years now, so maybe they have improved.

    My 2 cents is that I do believe that the cure is close. The reason that I haven’t used my pump or CGM is that I had an islet cell transplant. I had 2 years with no insulin at all and now use about 8 units which gives me very good control. I feel good all of the time and have no lows at all. This is not considered the cure because of the immunosuppression that is necessary, but I have found the side effects of that to be much, much easier than insulin and I believe that my life will be extended by this intervention. There are so very many research projects that are being developed at this point in time that sure seem to be on the cusp of the actual cure. I believe it is only a matter of time until one gets there. What I have seems like a baby step away.

    I have to end by saying that my transplant was funded by the JDRF as are many of the research projects I have alluded to. I am a huge supporter and advocate.

  6. Bob P says:

    Beautiful post.

  7. Thanks for your words. It made a late Friday night memorable and ended the week on a positive note. You are a real diabetes superhero!

  8. Thanks for your words. It made a Friday night more memorable and ended the week on a positive note. You are a real diabetes superhero!

  9. Wendy says:

    When you are a small child, it feels like it is all about the needles and the pain involved. For this reason, I want a cure, not a better machine. I just got a cgm for my five year old. Inserting the needle is painful. Some people say the artificial pancreas is like a cure. From her perspective, it isn’t even close. I would like to see all funds go to research to find a cure.

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