So a lot of people received letters like these in the mail recently:
I’m not sure the letter has a purpose, other than to prove that the writer, Dr. Richard Migliori, Chief Medical Officer at UnitedHealth Group, can write an entire page full of words and still not say anything meaningful. I suspect that in this case, that was the point. Plus, in all fairness, it’s hard to be both a doctor and an administrator at the same time.
Now, you might think this letter would make me mad, because it doesn’t really address my concerns at all. But I view it positively. Despite the archaic nature of the correspondence, it is actually communication. From a real person.
Here’s the thing: As a result of the various #DiabetesAccessMatters campaigns, people know we exist now. And they feel like they need to respond to us. Look… UHC wasn’t going to get a bunch of letters and then immediately wake up and say, “Whoa, maybe we’re not doing the right thing here. Maybe we should change our minds”. But in raising our voices, we began a dialogue. It’s a dialogue that will probably have to continue for some time, but that’s my point.
Now that the dialogue has been opened, we need to keep the conversation going. Maybe that means responding to a letter like this directly. Maybe that means calling your state’s insurance commissioner to voice your concern. Maybe that means letting your employer know that UHC isn’t your favorite insurer right now. That’s what I did, and I think my state insurance commissioner is next.
Much of the answer to the #DiabetesAccessMatters issue is the same as it is for other issues before us as People With Diabetes or friends or family of PWDs. To win the day, we must apply pressure, and keep the pressure on. We need to overcome fear by standing in the knowledge that we are on the right side of history.
We’re not asking for anything more than what we deserve. UHC patients are not asking for anything less than what they had prior to July 1. Because it’s what they deserve. It’s what they’re paying for. And, oh by the way, it wouldn’t cost UHC one extra dime to allow the same choice that existed less than a month ago.
So don’t stop communicating. This conversation may be just beginning. It’s up to us to make sure it doesn’t end until choice is restored.
I need to take a moment to talk about last Thursday. A day like many other days, full of commutes, and workouts, and tasks to complete. Only this time, it wasn’t exactly a typical Thursday.
Sometimes, the diabetes community wins.
Four big announcements took our world by storm that day, and the news was, to me anyway, all positive.
The day began with an announcement from Type Zero Technologies and Tandem, announcing a working agreement to use Type Zero algorithms in future t:slim artificial pancreas solutions. For a pump agnostic group like Type Zero, it’s very cool to see them working with another partner in addition to CellNovo. I hope to provide more insight on this at a later date. For the official word on Type Zero and their work with Tandem, CLICK HERE.
But wait… that’s not all. There’s more!
Thursday was a big day at the U.S. Food and Drug Administration, as a hearing took place to discuss Dexcom and its latest continuous glucose monitor, the G5, to decide whether it could be officially approved for patients to make dosing decisions. That’s not the exact wording, but in simple terms, that’s it. In short, FDA approved the measure, and now we all have to decide what that means for us, individually.
For some, this decision isn’t a big deal, because they’re dosing off of the Dexcom readings they see already. For others, they’re thrilled that they see the okay from an official government agency to do this. For still others (Ally makes some points worthy of discussion here), there are questions like “Will I now be denied test strips because insurers will want me to dose off of the Dexcom?”. Again, many sides to the issue, so it will be interesting to see what the coming years bring.
Another, important side to this story: the fact that this disposition makes it so much easier to include CGM within existing Medicare framework in the future. It will probably still require Congress to act, which they haven’t wanted to do for a while, but there’s no question a major roadblock is out of the way.
This was a real success story for the Diabetes Community, as it rallied behind initiatives from Diabetes Patient Advocacy Coalitionand diaTribe to sign petitions that were seen by FDA as important influences. They really do listen to us, folks.
But wait… that’s not all. There’s more!
Bigfoot Biomedical also heard from FDA on Thursday, getting approval to move ahead with stage 1 clinical trials on their smartloop™ automated insulin delivery system. Bigfoot has been working hard, and there are so many visible, familiar, lovable faces associated with this company that it’s hard not to root for their success.
The stage 1 clinical trials will be starting shortly, in the San Francisco Bay area, in Santa Barbara, California, and in Denver, Colorado. If these trials are successful, they hope to move into stage 2 trials by the end of this year. Yay Bigfoot!
Many people have written about Dr. Damiano and his systems over the years, so there’s not much more I can add, except to say that this recognition is long overdue, and if I were to name the ten most important living scientists working on diabetes-related causes right now, his name would be very near the top. What he and his team have been doing has been influencing all of us, whether we know it right now or not.
Can you believe that all of this good news came out over a single 24 hour period? As my news feeds popped up with each new story Thursday, I could hardly contain my happiness.
Particularly gratifying to me were the many tweets and Facebook status updates from people in the Diabetes Community who feel like there’s a reason to hope again. And boy, do we need some hope. For that reason alone, Thursday was a very good day.
Sometimes, the Diabetes Community wins. Thursday was a great day. Thank you for doing your part to help make it happen.
**Note: the original draft of this post noted Bigfoot Biomedical as a non-profit. It was my mistake, which I am happy to correct.
Asha Brown is a unique individual. Diagnosed with Type 1 diabetes at the age of five. She later developed diabulimia, a dangerous condition. Fortunately, she was able to overcome diabulimia, and she has been in recovery for seven years now.
The really cool thing about Asha is that she co-founded We Are Diabetes, which works with families patients, and health professionals across the USA to help and support those living with diabetes and eating disorders.
Today, we talk about diabulimia, how We Are Diabetes serves and supports, and the challenges faced by patients post-treatment. This was a conversation I’ve wanted to have for a long time, and I came away with a lot of knowledge that I didn’t have when we began.
Reference Material – Click below for more information on this topic
Asha Brown is Founder and Executive Director of We Are Diabetes, which provides information, hope, and support to people living with diabetes and eating disorders: wearediabetes.org
Like I mentioned before, last week was a very busy week. Part of that week meant being busy in a very pleasant place. Mixing work with pleasure? Okay, I’ll do that.
I spent last Wednesday, Thursday, and Friday working at the DPAC booth at the annual Children With Diabetes Friends for Life event. This is the mother of all diabetes gatherings, with thousands of People With Diabetes and their families descending upon Orlando for nearly an entire week. This was my first experience being there for more than just a day, and admittedly, my experience was not the typical conference-goer experience, but here are some things I experienced and noticed during my time there.
I arrived on Wednesday morning, about an hour or so after MasterLab began. MasterLab is a one day advocacy workshop presented by Diabetes Hands Foundation. There were a number of presentations, and I hope all of the attendees got a lot out of them, or at least were able to grab a nugget or two that they can use in their advocacy efforts in the future.
What I experienced: I saw many advocates from many countries who were very much into the focus of the day, which was to advocate for everyone living with diabetes. It’s sad to know that diabetes advocacy is needed elsewhere in the world, but good to know that there are stellar advocates living in Columbia, Mexico, Puerto Rico, the UK, and other countries.
What I noticed: Much of the talk was USA-specific, which risks alienating those attending from other countries, but I’m hoping this is a temporary “we’re learning how to do this” kind of thing.
Diabetes Patient Advocacy Coalition is a remarkable resource for people living with and affected by diabetes. We were able to garner many signatures for the Dexcom G5 labeling petition to the U.S. Food and Drug Administration, which will be holding a hearing on July 21 to discuss the issue. Our goal was to get 5,000 signatures on the petition. As of right now, we’re nearing 6,000. Yay Diabetes Community! The diabetes community was able to rally to this so quickly thanks to the fact that DPAC makes it soeasy for someone to add their name and voice to the issues that mean the most to us. I urge you… take a hand in your own diabetes advocacy by going to diabetespac.org and signing a petition or sending an e-mail. We do best when we speak for ourselves. Tell your story. Tell it from the heart.
What I experienced: Despite being “on stage” (to use a Disney term) most of my time there, the exhibit hall was punctuated by bursts of activity before and in between conference sessions, then amazingly slow lulls once the sessions were, um, in session. I’m not sure how I did for DPAC, but I hope I did well, and I was happy and honored to do what I could.
What I noticed: There is still an overwhelming desire for knowledge among the diabetes community, especially its newest members. During my time manning the booth, I met a pair of first-time attendees, grandparents of a young person diagnosed not too long ago. As we discussed our diabetes lives (like you do), and they expressed some of their concerns, they must have seen the “everyone’s been through this phase” look on my face. One of them looked at me and said, “You’ve been living with this for 25 years… we want to know… tell us!“, as only a grandparent can express it. These two wanted to know everything about insulin, devices, burnout, you name it. They were in the right place that week to learn about all those things. And that’s not the only conversation I had like that while I was there. This is one of the many reasons why we need DPAC.
Finally… the one-on-one, human interactions with people are what make these gatherings special. I’ve said that many times after events like this, but it is an undeniable fact. The Diabetes Online Community has been vital in bringing together people from everywhere who have felt alone living with diabetes. Especially people like me. But the internet can only do so much. While my social media connections helped me crawl out of a depressive shell many years ago, the interpersonal connections have helped me stand tall, and build constructive and meaningful relationships that will hopefully last a lifetime. It’s that much more. What I experienced: The feeling that no matter how big my diabetes circle of friends is, there’s always room for more. It was great seeing existing friends like Karen and Bea and Scott and Mike, but it was also wonderful to finally meet Cara, and meet Tina, and meet Nia (who lives in my city!), and meet Becky, and Trip too. And almost instantly I want to hang out with these people, and advocate for them, and protect them. That feeling comes from actually meeting people and getting to know them at a level that few are capable of, because the one thing you have in common is the one thing that bonds you tightest to each other.
What I noticed: I was not the only one who noticed the absence of Medtronic at FFL. Every other pump manufacturer was there. Dexcom was there too. There are probably reasons for this which I’m not privy to, but many people noticed, and their speculation of why Medtronic was absent covered a broad spectrum of opinions. I’m not sure it matters why Med-T didn’t make it, and maybe it was okay that they weren’t there this year. But to use the word again, the absence of Medtronic allowed others to form their own opinions about products and corporate behavior, whether those opinions were accurate or not.
Because I spent most of my time working in the exhibit hall, I can’t say that I had a typical conference attendee experience. But because of these moments and others, I did have a typical, wonderful personal experience during my three-plus days in Orlando. Thanks to DHF for my invitation to MasterLab, and a special thank you to Diabetes Patient Advocacy Coalition, Christel Marchand Aprigliano and Bennet Dunlap, for the opportunity to put my mouth where my motivation is. Or something like that.
All of this reinforces the notion that it’s not about the disease, it’s about the people living with the disease. The idea that if you fall into a hole, someone will jump in to help you. Because they’ve been there before, and they know the way out. Our lives don’t get easier with our diabetes diagnosis. But knowing that others are walking the same stretch of road, right alongside us, makes us closer.
That’s right… I’m back. Back from Florida (more about that soon), and back as an athlete.
Sunday marked the yearly occurrence of my local neighborhood 5k run. The 2014 5k was the last athletic event I participated in before my knee was injured and repaired last year.
It was a difficult process, getting my body down to a workable weight, and getting my stamina up to the point where I could cover 3.2 miles without passing out. Even three weeks ago, I couldn’t cover two miles without wheezing and gasping for half an hour after. Could I make it all the way?
Well, the last three weeks have made all the difference. I’ve concentrated on feeling comfortable running, and not pushing myself to the brink like I’m used to. Did I walk part of the way? Yes. I walked about 3 or 4 tenths of a mile during this run. But again, the number one goal in every event I participate in is finish. Everything else is secondary. And in the end, I didn’t finish too badly:
My goal (beyond finishing) was to finish in 40 minutes or less. From the photo above, you can see that I finished in just under 34 minutes, which is faster than I’ve run all year.
My diabetes played well all day. Just a little high (170 mg/dL) at the beginning of the run. I ran a 30 percent temporary basal for an hour, beginning just before the race began. The end of the race saw a 148 mg/DL. Well played, Stephen.
There are many factors that went into this successful effort. But there’s no denying: I’m back. And it feels so good to be back. Now I know I can do it. Don’t ask me what my next event will be. But now I know there will be another event. That makes me very happy.
I have no medical training. If you consider anything written here as medical, legal, financial, or any other kind of advice, you’re out of your mind. Please speak to a learned professional before making any changes that might affect your health. Any of the original content found on this site is my property and should not be reproduced, copied, or otherwise used without the author’s expressed written consent.
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