You Can Help to Create CGM Medicare Coverage
If you speak up, things will change!
I am a huge proponent of continuous glucose monitoring and believe that everyone deserves it's benefits and protection if they want it. Please take a moment to help the JDRF give a friendly push to our legislators. Doing the right thing for older people who have type 1 diabetes is the least that should be done. Your participation only takes a few moments and I've seen the JDRF's actions help issues like this in the past. If you speak up, things will change! Thank you, Scott
One Voice Calling for Medicare Coverage of Continuous Glucose Monitors (CGMs)
We need your help. Ask the U.S. Senate and U.S. House of Representatives to cosponsor bipartisan bills to ensure people over 65, and who are Medicare-eligible, have access to life-saving CGMs!
The Co-Chairs of the Senate Diabetes Caucus have reintroduced important bipartisan legislation (S. 804)
—the “Medicare CGM Access Act of 2015”—that would facilitate Medicare coverage for continuous glucose monitors (CGMs) and help pave the way for the next generation of CGM-related technologies, such as artificial pancreas (AP) systems.
This legislation now joins a bipartisan companion bill, (H.R. 1427), the “Medicare CGM Access Act of 2015,” introduced in the U.S. House by the leadership of the Congressional Diabetes Caucus.
But we still need your help! Please take a few minutes to:
- Email your Representatives and ask them to support H.R. 1427, the “Medicare CGM Access Act of 2015.”
- Email your Senators and ask that they support S. 804, the “Medicare CGM Access Act of 2015.”
After you complete these two simple action steps, please ask your friends, family, neighbors and coworkers to do the same! And spread the word on your favorite social media pages using the hashtag #MedicareCoverCGM.
Why CGMS should be covered by Medicare
CGMs are FDA-approved, physician-prescribed devices that detect and display blood-glucose levels continuously—and reveal trends in these levels that often go unnoticed. A JDRF-funded CGM trial has shown that the rate of severe high blood-sugar (hypoglycemia) events among adults using a CGM fell by two-thirds over the first year of use. Not surprisingly, CGMs are recommended by national diabetes clinical guidelines—and they’re covered by nearly all private health plans.
Unfortunately, Medicare does not currently cover CGMs—despite the evidence of clinical benefit. The result? Millions of seniors with diabetes are left vulnerable to severe low blood-sugar (hyperglycemia) events that can lead to seizures, bouts of unconsciousness and hospitalization. And the costs are not just physical:
- Hypoglycemia inpatient admission rates are an average of $17,564 per visit.
- Diabetes is one of the costliest chronic diseases, accounting for $245 billion in economic losses in 2012, including $176 billion in direct medical costs.
- Of that $176 billion, 59 percent is attributed to those ages 65 and older.
- Overall, 42 percent of Medicare fee-for-service spending is attributed to people with diabetes.
JDRF has been working closely with other interested stakeholders to encourage Medicare to cover CGM devices—and we have made it one of our top national advocacy priorities. While we continue to work to resolve this issue quickly, we need your help to build support within Congress.
Please take action today!
Remember, all you have to do is:
JDRF Speaking Event Wrap Up
A huge thank you to the New Haven Connecticut chapter of the JDRF for inviting me to give the keynote at their 2015 annual meeting!
I took the opportunity to thank the nearly 100 advocates in attendance for their time, effort and selflessness. I shared with them how their dedication has helped Arden and how, in turn, I've shared our lives with all of you. Then I told them about some of the amazing things that you have accomplished and shared with me - Full-circle advocacy - I wanted to leave them with the feeling that their local efforts reach much farther than perhaps they realize.
and I took a few pictures for you to see...
I spoke a bit about my time at this event in episode #20 of the Juicebox Podcast - links to podcast episodes are below...
Will Hauver
I would like to thank Lydall Hauver for her courage and for her desire to support the diabetes community. It speaks to the strength of our community that in the wake of what is undoubtably Lyndall's greatest personal tragedy, she would allow herself to be interviewed. I can promise you that if you have type 1 diabetes or love someone that does, this post and the podcast episode of my conversation with Lyndall will ultimately fill your heart with love, hope and a sincere desire to live well with type 1. So grab a tissue, read Lyndall's post and then listen to me chat with her and Will's good friend Paige, about his life and legacy. - My best, Scott
The tragic and devastating death of our son Will, a beautiful person on the inside, and a good-looking man on the outside, has taught me something very valuable.
One person has the ability to make a positive and significant impact on this world.
More photos of Will at JuiceboxPodcast.com
It has been made clear to our family that Will made a huge impact on many people in his 22 years. The quality of Will’s life, and what he did with those 22 years was incredible. Wherever he went, he made an impact. We have heard over and over again about how Will’s compassion, his way of including everyone, his friendship, ‘saved’ many a friend from transferring from college, from quitting a team, from not joining in a great event. Will had such a handle on the ‘big picture’ - what was important in life. He was often sought out by his friends for advice and help. Using his humor he could really relate his advice without being preachy and condescending. He had such an easy, approachable, welcoming way about him, with the confidence that others admired and respected.
One person has the ability to make a positive and significant impact on this world.
“It is not length of life, but depth of life.”
This past summer Will was nominated to complete the ice bucket challenge for ALS awareness and donations. While donating $48.25 to an ALS charity (to an ALS charity Brigance Brigade) he filmed a video, which is very funny, and created a challenge for the JDRF and “LIVEabetes”. After Will passed away, his good friend from high school, Paige, one person, galvanized behind this comic but meaningful video, and created a movement to raise funds for the JDRF. Through a lot of hard work, a lot of learning about different social media options and a lot of creativity, Paige created a great group of supporters, myself, and my family included, to create a worldwide challenge raising awareness and money for type 1 diabetes. Incredibly, to date, we have raised over $80,000 for the JDRF to fund a cure for this dreadful disease.
Paige and Will, two young people, have made such an impact on this world, simply by being good people. They chose to live their lives by these simple principles: be kind to others, be inclusive, help others, know who you are and do not compromise your morals to fit in and make deep and meaningful connections with people you encounter. After Will’s death people from around the world rallied behind the man he was, to support the Egg Crack Challenge Paige worked hard to promote and grow. We now have an amazing community of friends, new and old, who have banded together to raise awareness and funds for a cure for type 1 diabetes.
One person has the ability to make a positive and significant impact on this world.
Our daughter Megan and Tommy are like Will and Paige, two people who have a keen sense of self, who stay true to that self. Similar to Paige they have worked hard to promote the Egg Crack Challenge. Additionally they have created T-shirts, posters and other item to share the joy Will created as an artist to raise money for type 1 diabetes and for scholarships in Will’s name.
Will told his girlfriend weeks before his death, “Each day is a gift, that is why they call it the present.” His ability to use humor, and kindness to live each day to the fullest, to make an impact on each person he encountered, has rubbed off on me, and on our entire family. This attitude is why we get up each day and try to salvage what we can out of each day, no matter how hard and how sad we may feel. Knowing that one person has the ability to make a positive and huge impact on this world makes me move forward to create my own positive, impact, each day.
- Lyndall Hauver, Will's Mother
You can listen to my conversation with Lyndall and Paige with the player below, on Juicebox Podcast, iTunes, Stitcher or your favorite podcast app.
links you need:
Will's JDRF Donation Page
Egg Crack on Facebook
Will's Egg Crack Video on YouTube
Rollins College Memorial Service for Will
Egg Crack Homepage
Shop for gear and bracelets (Supports JDRF and scholorships)
Encapsulation Gives Me Reason to Hope
When I hear the word ‘cure’ it sends my mind racing with visions of science fiction television. I imagine my daughter being scanned by Doctor McCoy, in an instant his tricorder beeps and Arden’s pancreas springs back into action. Everyone in the room takes a pause for dramatic effect and type 1 diabetes is no more.
It’s that level of high yet unreasonable expectation, mixed with a healthy amount of cynicism that keeps me from becoming too excited when news of “promising research” is announced. I read the articles - well, I thoroughly peruse them - but most research news leaves me feeling like real-world science hasn’t quite caught up to the desires of the scientific community. Curing a disease without significant effort, crazy drugs and more than a bit of luck seems unlikely to me right now. In other words, I’m a tough sell.
Until I heard about Beta Cell Encapsulation…
Encapsulation grabbed my attention in such a big way that I asked it’s benefactor, JDRF (formally known as Juvenile Diabetes Research Foundation) if there was someone that I could interview about the technology. They were kind enough to put me in touch with JDRF Director of Discovery Research, Albert Hwa, PhD.
My conversation with Albert did a few things. It reminded me that I am not a scientist, gave me great hope for type 1 diabetes treatments and made me want to tell you about what I learned without being too sciencey - because I don’t want you to just peruse this article.
What is Encapsulation: In layman's terms, the process of encapsulation has made it possible for foreign cells to be introduced into the body after being coated (encapsulated) with a substance that protects them from your immune system. Specifically for the ViaCyte product design, the cells are inserted into a device that is currently the size of a business card and surgically placed under the skin during an outpatient procedure. The device allows its cellular passengers to interact with the body, measure the level of glucose and produce insulin without being identified by the immune system as a foreign body - all without anti-rejection drugs. Through the nature of science, encapsulation keeps your immune system from attacking the new insulin producing cells without blocking other needed functions. That’s science!
Is this a cure: Encapsulation is not a cure but it is the first stopgap between a cure and the reality that people living with type 1 diabetes experience that makes me say, “Where do I get this for my daughter?” It’s not a cure because the root issue is not being addressed, as the pancreas remains devoid of insulin-producing cells, and the autoimmune responses against them persists. The goal of this research is to introduce donor beta cells that will eliminate the need for manmade insulin. That would mean no more shots, finger sticks, insulin pumps, glucose monitors and the wildly fluctuating blood glucose levels that cause serious long-term health issues.
How long will the device last: Researchers aren’t positive at this time how long the cells will produce insulin before they need to be replaced, but a minimum of two years seems to be the initial hope and goal. Having a small procedure every two years is a vast improvement over what my daughter and the millions of other people who have type I diabetes deal with every moment of their lives.
More details you want to know: There are currently two companies conducting trials on encapsulation, both are being partially supported by the JDRF. The trial that was being held as I spoke with Albert Hwa was happening in a human being. Human trials are very exciting because so many ideas never get past animal trials; Most of the research that people with type 1 diabetes hear about cures mice but never makes the leap to helping people. The encapsulation human trials are in their infancy; Albert told me that even if everything went exactly perfect with the trials, it would still be “ten years” before Encapsulation could become a reality.
I chose to learn more about encapsulation because I’ve watched my daughter live for nearly a decade with type1 diabetes and this is the first time that I’ve felt like I was looking at a potential answer that could make it to market. I’m not a health care professional, just a father hoping for his daughter’s life to get better. In my estimation, encapsulation feels possible. I can imagine driving my daughter to her doctor to have a form of this device implanted, not unlike a pacemaker. For a guy that doesn’t usually feel very hopeful about stuff like this - I feel hopeful.
You can read more about encapsulation on the JDRF website, they even have the sciencey stuff:
Korn Frontman Supporting JDRF with New Song
- This story is reposted in it's entirety with permission -
A huge thank you to the hard rock music news web site Blabbermouth.net for their generosity.
KORN's new song "So Unfair", which was inspired by frontman Jonathan Davis' youngest child, Zeppelin's battle with Type 1 diabetes, can be unlocked by going to this location and contributing to JDRF (formerly known as the Juvenile Diabetes Research Foundation), a major charitable 501(c)(3) organization dedicated to funding type 1 diabetes research.
Says Davis: "I want to support this wonderful organization that is fighting tooth and nail to help these little kids out. It's a horrible disease and I hate seeing kids in pain.
"Your gift will help JDRF to create a world without Type 1 Diabetes.
"Everyone who contributes to this campaign will receive our new song, 'So Unfair'. I'm also going to invite one lucky contributor and a friend to our private recording studio to create and record a song with me.
"Good luck and see you in the studio!"
Beyond the dietary changes and other lifestyle accommodations, Jonathan's son's struggle has prompted the singer and his wife Deven to become deeply involved in raising funds for research.
In a video message promoting the "So Unfair" campaign (see above), Jonathan said: "[My son's had Type 1 diabetes] for now a over a year. It's a battle for the parents, it's a battle for him, it's a battle for everybody. It's a horrible disease.
"I was out on the road. My wife was calling me, saying Zeppy was really tired and just being lethargic and laying around, and something was wrong. I got home from tour, and we took him to the hospital and told them what was going on. And they started running tests and doing all these things, and they decided to check his blood sugar, just to see. I think he was, at that time, 290. And so that set off a flag for Type 1 diabetes. His glucose was high. And when that happened, that changed my life forever. I found out my son had Type 1 diabetes."
He continued: "It's been very hard dealing with that, because there's a lot involved. I have to constantly monitor his glucose, I have to constantly hurt him and stick him with needles, and he doesn't understand.
"It's a horrible disease and I really wanna do whatever I can do to make a difference to help find a cure for this. 'Cause it just doesn't affect my son. I feel for everyone who has this disease. It's not fair at all. And so I started writing this song, 'So Unfair', about it. Because you're asking a child not to eat candy. I've gotta watch his carbs, I've gotta watch the sugar count, I've gotta watch everything. And how do you tell a child, 'You can't eat this. You can't do this. You can't do that.' So it's been a constant battle with me. I constantly worry about… At night, I've had him… his blood sugar drop really low where it'd scare where he won't look up. It's a very difficult thing to deal with. But there's one thing that keeps me going. I have a support group, which is my family, JDRF. They give me hope. They're searching for a cure constantly. I have hope that they're working on an artificial pancreas. I've been reading a lot about that."
Jonathan added: "Now [Zeppelin is] seven years old and he won't do the pump; he doesn't wanna use a pump. For me, it would be a lot better for him to use the pump, because he only has to get stuck one time every two days, but right now I'm sticking him about ten times a day, between finger checks and actual shots.
"He's a little boy, so when we got to sleep at night, he'll wake up in the middle of the night and try to sneak food and he'll wake up with high glucose in the morning.
"There's all kinds of challenges that I'm facing.
"Bottom line, I really wanna try and do something to help find a cure for this disease. And that's the bottom line. And I just wanted to express my frustration and my feelings in writing that song, 'So Unfair', and I wanted to put it out there and give all the proceeds to JDRF, so they can find a cure for this bullshit. And I'm just gonna say it, it's fucked up, and I want it to be gone. I don't want no one to suffer from this.
"If you can, buy the song, 'cause I want all the proceeds to go to this wonderful foundation that is fighting tooth and nail to help these little kids out.
"I hate seeing kids in pain; it just kills me. So buy the song. Let's find a cure for this bullshit, please."
"So Unfair" is available here for preview and download. www.rallysong.com/korn
You can read this story where it originated at http://www.blabbermouth.net/news/korn-singer-jonathan-davis-discusses-his-sons-battle-with-type-1-diabetes-video/