Hey FDA, what about diabetes!?
From diaTribe:"The Food and Drug Administration has begun to hold a series of patient meetings to gain a better understanding of specific diseases. Over the next five years, the agency plans to conduct at least 20 such meetings on conditions ranging from Chronic Fatigue Syndrome to Narcolepsy to Irritable Bowel Syndrome.But not diabetes. That is unacceptable.Four “slots” remain open (view the current list), and we want the FDA to add diabetes to its meeting docket for 2013.According to the American Diabetes Association, nearly 26 million Americans have either type 1 or type 2 diabetes, and an additional 79 million have prediabetes. Those numbers are also increasing each year – the CDC estimates that if current trends continue, one in three US adults will have diabetes by 2050.No one disputes that diabetes is one of America’s – and the world’s – most serious health epidemics. In 2012, more than one in five total US healthcare dollars was spent on diabetes, totaling $245 billion, and the government covered 62% of those costs, meaning everyone is paying for this epidemic. Despite growing needs, research dollars have also leveled off.New therapies need to be investigated, tested, and brought to market, and as part of that process, the FDA must understand the daily challenges that patients face.We need to tell our story to the FDA: about the need for accurate strips, more physiologic insulin, a broader range of drugs, and the Artificial Pancreas.Our voices need to be heard.
Thank you very much."
Seven Years Later
It's 2:45 in the morning on August 22, 2013 and I can't sleep. I'm tired but not in the way that I remember tired feeling seven years ago. Seven years ago when I felt tired, I'd shut my eyes and go to sleep, the process felt natural and without repercussion. Seven years later, I forget what it's like to feel refreshed. I sleep when I'm able and stay awake when it's necessary. Tonight I'm up fighting with a few spoonfuls of a bedtime snack that seems to want to keep Arden's BG at 250.
I checked Facebook, perused Twitter, read your blog comments, made notes for myself so I won't forget to do some important things tomorrow and so now I'm downstairs writing to all of you. It's 2:52 now and in a few minutes Arden will have type I diabetes for seven years.
I remember the emergency room doctor coming into the room, he looked tired and he didn't make eye contact immediately upon entering. I knew he was going to tell us something terrible, I could feel it. Kelly and I sat next to each other in a palatable pool of sadness, waiting for him to confirm what we already feared was true.
The next two years were among the worst that I've ever experienced, but today, seven years later, I'm mostly okay and Arden is great!
It's exactly 3 AM now, the clock turned while I was looking for a passage from my book to share with you. I looked up and saw the time move forward when I heard, and I can't believe this just happened, when I heard Arden's DexCom beep twice at exactly 3 AM. That seemed like a sign until I realized that thing beeps all damn day... Anyway, I could search my mind all night for the right words to explain what I've learned in the last seven years, but I think I already found them when I wrote my book...
People can make claims about how to navigate personal turmoil, and there is a literal ton of books to help you get through life’s terrible moments. I only have one piece of advice, and I can lend it to you with the full knowledge that it served me well.
Don’t stop and don’t give up.
Some days will bring the weight of the world to you—don’t stop. There will be times that those days turn into weeks—don’t give up. There is a wonderment of understanding on the other side of your struggle, and it’s worth getting to. These days and weeks that seem as though they exist only to torture you and the people that you love—they teach. The pain strengthens you and the dings in your soul aren’t as deteriorating as they initially seem. In the end, they are reshaping it, and it’s up to you to decide what shape it will take.
Join The Strip Safely Tweet-In, August 21st at 8pm EST
Strip Safely is headed by my friend and DOC legend, Bennet Dunlap. In my opinion, when Bennet says something is important for me to pay attention to... it's important. I hope you can send some tweets tonight! - Best, Scott
Taken from www.stripsafely.com
On Wednesday, August 21st beginning at 8pm Eastern, we are staging a StripSafely Tweet-In, asking Congress to send aides to the upcoming Diabetes Technology Meeting on September 9th.
Please join us and add your voice.
We’ve made it easy. Simply go to the Let’s Tweet page of Stripsafely.com, find your state and click the link listed next to your senators and congressmen. We’ve already created the message – you just need to tweet it out. (Don’t forget the leadership at the top of the page – we can all tweet to them!)
Then, please, get creative and send additional positive messages to help the diabetes community build friends in Congress. Include the hash tag #StripSafely. Feel free to use this link to our letter in your tweets.
Diabetes isn’t partisan about whose life it impacts. We shouldn’t be partisan in seeking support for our health.
GiveAway Winners Announced
If you were around at all last week you saw the celebration for the sixth anniversary of this blog. Giveaways were abound and now it's time to pick the winners. As always, we used the tried and true method of pulling names from a hat and the ever popular, 'first come, first serve', gambit.
I'll begin by letting you know that the first ten people that said (on the blog) that they would like a copy of the new book, 'Coco's First Sleepover', from Lilly/Disney will receive an email today letting them know they won. Next, Lauren's Hope announced two winners yesterday of the giveaway that they hosted to help me celebrate Arden's Day's sixth year.
Before you watch the video of Arden picking the JDRF and "Life Is Short' giveaway winners, I want to take a second to highlight the wonderful comments that folks left for the JDRF giveaway, and ask that you give them a read, the each uniquely express why walking for the JDRF is such a fantastic experience - check them out!
Okay, this video will revel the two people who won a signed copy of my book and the single winner of the $50 JDRF walk/ride donation - Bonus: you'll get to see my black eye. Thanks to each of you for reading and for entering the various contest, good luck!
Winners, you will be receiving an email later today with instructions on how to claim your prize. Hold tight.
Dear Teacher: The DX
The DX: The Diabetes Experience asked me to write a letter to the teacher of a student who has type I diabetes. They editor didn't give me any more direction then, "We'd like a Dear Teacher' piece". Well, I wrote a letter in the tone of the real life conversations that I have with Arden's teachers and I posted a link to it this morning on Facebook and now I'm posting it here.
I'm very touched by the warm responses you have been leaving on Facebook, you guys rock!
"I wish I could like this more than once!!" - "I loved it!" - "Great piece!"
If you get a chance, pop over to The DX and check it out.
In a perfect world, the parents of children living with type 1 diabetes wouldn’t have to leave their kids for a third of every day with people who don’t understand the intricacies of diabetes the way that we do. I guess, though, that if the world were perfect, we wouldn’t be talking about this at all. <read the rest on The DX>
Disclosure. I was compensated for my writing on The DX (A blog from Sanofi Diabetes) but I was not asked to change or have any opinions regarding Sanofi or their products, of which Apidra (Arden's insulin) is one. Trust me, if that Apidra goes haywire... I'll be the first one to speak up.
I can't tell you just how great this felt to get...
