My thoughts on JDRF and the “c” word…

February 3, 2011

 

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.


My Artificial Pancreas Post

January 15, 2010

On Wednesday, the Juvenile Diabetes Research Foundation officially announced that it is teaming up with Animas Corporation to develop the very first Artificial Pancreas. This has been in the works for a very long time! They’ve been doing proof-of-concept studies for years including one here at the University of Virginia.

The device is going to be developed over the next few months and “should” be starting clinical trials by the end of the year. Depending on the difficulty it could be on the market in 4 years!

The term “artificial pancreas” is a little misleading  I think. The first version of this system will not be fully automatic like the name suggests. It will have some sort of predictive algorithm to help prevent high and low blood sugars. But if it still requires any kid of human input can it really be called an artificial pancreas?

I also think that the term is a bit misleading to people who don’t understand how it works. I’ve already read several posts on message boards and Facebook groups proclaiming that the cure is here. I cannot reiterate enough that this IS NOT a cure! A cure to me means that I am no longer diabetic. I no longer need to have insulin injected into my skin. Therefore, in any form, this artificial pancreas should not be considered a cure.

In fact, calling it a cure could prevent an actual cure. If the world believes there is a cure, then they will stop pushing for the real cure. For example, when insulin discovered it was announced as being the cure for diabetes. I suppose at the time it was the cure because it kept people from dying. However, we now know that it is definitely not the cure. Yet, according to the ADA 1 in 10 people think that diabetes is cured and 19% aren’t even sure if it is!

I know that there also a lot of people who are upset that JDRF is giving money to this project instead of an actual cure. In response to these concerns I would like to point out that one of JDRF’s missions has always been to improve treatment until there is a cure. For example, it was JDRF who funded more CGM studies to ensure that insurance companies would cover it more widely.

I would not call the artificial pancreas the cure. I sincerely and truly and wholeheartedly believe that it is a huge step forward in more effective treatments that will keep all of us alive and healthy until there is a cure.


Videos!

November 24, 2009

There hasn’t been much diabetes excitement for me today. My BG was a little high this morning but a correction bolus fixed that up for the rest of the day. In other news, Jeff had a fever yesterday. We were supposed to drive home today but the doc gave him antibiotics for a sinus infection. Therefore, we are leaving tomorrow instead. I’m anxious to go home and see my family.

So… I thought I’d share some awesome diabetes related videos with you today! What can I say? I love YouTube!

This first story is simply amazing. I can’t even begin to think about what this lady went through! She is unbelievably amazing! This video is from dLife. If any diabetic reading this doesn’t know what dLife is please check it out! It’s very cool!

The next one is a two-parter. I just thought it was so cool to hear Dr. Best talk about diabetes. I’ve always read about him and Dr. Banting but I didn’t even know video footage existed! I do think, however, that he’s stretching the truth a few things in there. At least that’s what I think from reading Michael Bliss’s The Discovery of Insulin. The patient in the interview is really cool though. It’s interesting to hear where they thought diabetes treatment was heading.

I posted this one on Facebook the other day, but I just want to make sure everyone I know watches it because it’s just too freaking adorable.

I hope you enjoyed those. And just a reminder. You can add this blog on Facebook to get updates!


Help Cure “Childhood Diabetes”

November 19, 2009

Yes, I also cringed when I read that title the first time. There are so many things wrong with the phrase “childhood diabetes” and the term seems to follow me wherever I go. The reasons behind my disdain are for another blog some other day. Instead, I’d like you to meet what may be the cure for “childhood diabetes.”

Bacillus Calmette-Guerin (BCG) is a generic vaccine that is used to prevent tuberculosis. However, it has recently been discoverd by Dr. Denise Faustman to also stop the autoimmune reaction in mice that causes type one diabetes and also prevents new beta cells from re-growing. That’s right. Beta cells can REGROW!

Now I don’t really want to talk about the science behind this because it’s relatively complicated for anyone who isn’t a nerd for diabetes research. But the jist is, it is incredibly promising research which could lead to a remarkably inexpensive cure to diabetes that could be administered by a simple injection. Amazing!

The reason I felt like sharing this story today is because of how this research is being funded. Dr. Faustman has been unable to acquire government funds for research. Her application for funds from the Juvenile Diabetes Research Foundation (JDRF) has also been denied. Therefore, her research is being completely privately funded by donors. Through the incredibly generosity of Lee Iacocca (of Chevrolet fame) Dr. Faustman was able to get the money to fund Phase I. However, anyone familiar with the FDA and getting drugs passed through it, knows how expensive it can be!

Therefore, a group of parents of children with type one have started a grassroots organization to directly fund Dr. Faustman’s research. There organization is called Help Cure Childhood Diabetes.

Despite the name, I found this to be an incredibly amazing idea. I have always heard skeptics talk about how drug companies don’t want to cure diabetes because then they lose all the money they are making off of us. I’ve also heard people say that groups like JDRF and ADA also don’t want to cure diabetes because then they would all be out of a job. I have always told myself that this is all completely stupid but I do often wonder if I am being naive. As a believer in capitalism I can see how there really wouldn’t be any financial incentive for a cure for diabetes. Which is why we need people with OTHER incentives to help find the cure.

I really, really love this concept and I truly hope more of it comes about!

PS. When you go to Help Cure Childhood Diabetes make sure you look at the “Meet the Chldren” page. It’ll make you smile and cry. They remind me of me. And of all my campers.