Aaron Kowalski and Cynthia Rice on Medicare and CGM’s

Yesterday, The Diabetes Patient Advocacy Coalition (DPAC) held its March Ask an Expert webinar series. The webinar included Dr. Aaron Kowalski and Cynthia Rice, both from JDRF.

The webinar brought attention to CGM data that shows it helps, data that shows Artificial Pancreas systems work, and how Medicare is not covering CGM’s and why they are not.

Throughout the hour, hearing them both talk, it was constant note taking. A lot of the information that they spoke about I had either heard or seen elsewhere before, but it didn’t all make total sense or fully sink into my brain until yesterday.

The reasoning behind why Medicare does not cover CGM’s is based on 100% BS. We, as a community, have done a great job reaching out to politicians to explain why it’s BS and why the Medicare CGM Access Act needs to be sponsored and cosponsored, but we need to continue the fight.

After every webinar from DPAC, I like to create some sort of actionable plan that I can easily do in order to continue to do something. Yesterday, I set up a calendar reminder once every 2 weeks to send letters, tweets, emails, etc. to my elected officials. Why didn’t I do it every week? Because, I have to be practical for myself and advocate the way that works best for me. I already knew that if I did it every week, it wouldn’t get done and then I would start hitting the snooze or remind button on it and then eventually it would be months later and never taken action on the events.

I also set up a few tweets and posts that I would like to send out over a period of time. One thing that Aaron Kowalski said was, “One thing that I do everyday is just try and get people involved.” That definitely resonated with me. If I can only do 10 things in a day, but I can also somehow get 10 others every day to do something, that is a lot more getting accomplished.

Another thing that I plan on doing in the next few days is to create “My Story” so that I can have saved and ready to just copy and paste when reaching out to my elected officials. As Cynthia Rice mentioned, officials like data, but they love to hear the stories of their constituents.

If you did not get a chance to attend the webinar, then you can watch the replay.

JDRF Woes

I have expressed my disgust in the past about my local JDRF chapter.  I used to have a great relationship with them in the past.  They would allow me to attend events that cost money, they would send me personal emails about events that they had upcoming and things were great.  Here’s the kicker, I worked for a local diabetes supply company at the time who was donating money for different walks and events.

JDRF walk to cure diabetes

After not being at the company, the relationship began to dissolve.  I was no longer receiving as many emails or invites to things.  I was denied to speak about the DOC and hand out Diabetes Advocates information.  Heck, I wasn’t even allowed to get votes from them for my Diabetes Heroes video.  Yet, they were constantly requesting money and things from me with their newsletters.

I have always loved JDRF because I love the things they are doing.  I love giving back to the kids and giving kids hope is great, so I always enjoyed attending JDRF events that were focused on kids.  I give them credit for attempting some sort of adult functions, but they occur once in a blue moon and the ones that are more frequent are like $50 tickets per person to get in.  Which means, that I will be attending with my wife and we will need to drop $100 every time we want to go to a JDRF function.  I’m sorry, but I’m not loaded with that kind of money.  Let’s also not forget that CSI Marketing Solutions (company I own) has donated plenty of money to them over the last 3 years, but that doesn’t matter come ticket time.

I see that somebody who previously lived in my area, now lives elsewhere (I’m not naming names, because I don’t know if they want names to be named), and they are having a completely different experience with their local JDRF.  This tells me that it’s not JDRF who has the problem, it’s my local chapter. But, I don’t know how far up the chain it goes.  Some of the day to day people in the chapter have always been great to me, but the directors seem to be the ones that put the hammer down on any sort of ideas that I’ve had in the past.

I am almost to the point that I want to begin supporting the local JDRF chapter in Pennsylvania where I am originally from.

How many others have frustrations like mine with their local JDRF chapter?

Both JDRF Walks on Same Day

This is something that really irritates me.  In fact, it pisses me the eff off.  Where I live, I am in the middle of two JDRF chapters that are about 25 miles apart from each other.  The walks for these chapters are about 15-20 miles away from each other.  I have relationships with both chapters and would like to see both chapters to succeed.  For that reason, I planned on going to both walks for each chapter.

Well, guess what?  Both walks are on March 31, 2012.  Can you believe that?  Two JDRF walks within a short driving distance between each other are on the same exact day.  I would expect that JDRF and the ADA have some sort of event on the same day, because that usually always happens.  Or maybe, a walk in south Florida and another walk in north Florida that is about a 6-7 hour drive away, that is acceptable.

But having walks this close together?  Unacceptable.  Now, I am only able to help one chapter, as opposed to two.

I’ve sent an e-mail directly to JDRF President Jeffrey Brewer.  Hopefully this is something that doesn’t happen again.  I don’t want to hear any excuses of “scheduling issues”, because there is no way that the schedules were so screwed up that two walks had to be held on the same day.

Unbelievable.

JDRF Walk in Boca Raton

It’s that time of the year again.  Time for the 3 local JDRF Walk’s in my area.  I typically make it to 2 out of the 3, but this year scheduling issues only allow for me to make it to one.  If you are reading this blog, than you don’t need to be told why it’s important for me to reach my goal.

I know that times are still tough for a lot of people, so I have decided to set the goal at $500 this year.  I set it at $1,000 last year, and I did not make the goal, so I want to make sure that I am setting goals that are challenging, but still able to be accomplished.

The link to my JDRF Donation Page is…well right there, you just skipped over it.  Go back a few words to the link.  It’s also on the right hand sidebar too.  If I can just get $1 from all my Facebook friends, Twitter followers, offline friends and family, I should easily be able to reach my goal.  I know that there are a lot of people out there doing walks and raising funds, so there is no hard feelings, trust me.  If I donated to every person that asked me, I’d be spending about $2,000 a year in donations, on top of what I already donate from my business.

Well, I appreciate any and all support and donations in advance.

FDA Releases Draft Guidance for Artificial Pancreas

Yesterday was a big step in the process of an artificial pancreas.  You may have your opinions of an artificial pancreas, and that it’s not a cure.  You’re right, it is not a cure, but if it makes your life as a diabetic better, than I am all for it.  This thing is long, so if you don’t like to read long documents, than just wait a few days for the experts to go through it.  The JDRF will be releasing some expert notes and reviews of this draft in the next few weeks.

JDRF CEO and President Jeffrey Brewer is quoted as saying:

“Our initial review of the draft AP guidance indicates that the FDA has been responsive and listened to the recommendations of leading clinicians and researchers in the type 1 diabetes field.  It also appears that the draft guidance lays out a rapid timetable to move from inpatient trials to outpatient trials to prove the AP’s safety and efficacy, and if that turns out to be the case it is good news.”

You can find this guidance document for the artificial pancreas over at the FDA.

Type 1 Diabetes Day – T1D

So today is November 1, 2011. It is a day of many special things. There are some birthday’s to be celebrated today, that is taking up some of my time in reading blogs and writing posts, today is the beginning of Diabetes Awareness month, and it is also the first Type 1 Day (T1D).

I received an e-mail from JDRF a few weeks ago talking about T1D, but I still was not exactly sure what it was going to be all about and what the campaign was going to be to help spread awareness. All I knew is that it was a day to spread the differences between Type 1 and Type 2. I think that it is great to have specific days dedicated to individual diabetes related “things” throughout the entire month. I like little themes to make up a larger one.

I received a little foam finger in the mail the other day from JDRF that explained it was to be used to “give diabetes the finger.” Genius, I love it. I love giving diabetes the finger. You can take that for whatever meaning you want, but they encouraged us to take pictures with the foam finger. So you will be seeing one photo a day either on the blog or on Twitter with the foam finger. It is almost like the concept of Flat Stanley where kids are to take pictures with him in different regions of the world and report on where he was and what he did there.

This T1D campaign may not be the best idea this year, but with it in it’s first year, I think there are always ways to improve going forward. I think the concept and idea is great. JDRF has been hearing from adult type 1’s for a long time that we are left out, they don’t do anything for us, etc. Well here is a perfect campaign and example on how they are gearing something towards adults. I love the fact that national is being receptive to our voices, even if it took a long time. If they could only get my local chapter to be more receptive.

They created a video to promote T1D, by introducing you to a girl named Meg. I think that the video uses an older, World War 2 style type of campaign. I like retro. Here is the video below:

To wrap up today’s post of many to come this month, I just want to say that I am honored to share my birthday with a new Type 1 day. I see big things for this day in the future.

JDRF Not Giving Me the Time I’m Requesting

JDRF not being responsiveI have been mentioning lately that my local chapters of the ADA and JDRF have not been very responsive to me. I have been sending emails and tweeting to them trying to get their attention. My local JDRF chapter is usually pretty good with responding to me but not much gets done because things have to be approved by the area manager and it seems to stop there every time. It makes me mad because I know that Jeffrey Brewer is receptive to the ideas that I and others share because I have spoken with him directly about it. This is one of the obstacles of taking the online world offline.

I would really like to work with them for World Diabetes Day but it’s tough to plan things when it is a one way conversation. At times I just think that people don’t see or get the big picture.

Don’t even get me started on the Diabetes Hero video. I emailed them multiple times about it and no response. They could get a $10,000 donation and no response. I know that a lot of chapters just don’t have the resources because they have 2-3 people trying to do the job on 10-15. I’ve offered to help them with some of their social strategies and outreach but no response. This is what I do for a living and I’m willing to help them for free, it’s almost like a donation. But like I said before, I don’t think that they get it.

Maybe there needs to be some form of communication from the top down explaining to all the local chapters that there will be some people contacting them and talking about the DOC and they should listen to what they have to say.

Luckily, there are a few others in this area that are as passionate about this as I am and hopefully we can all work together to get things done.  Mike Hoskins has provided me with some great details and information on ways that him and his area have been able to form a great relationship with their local JDRF chapter.  I would love to hear from everybody on what has worked and has not worked in getting more done with your local chapter.

Have a great day everybody.

JDRF Promise to Remember Me Campaign

Next month I will be visiting and touring the Diabetes Research Institute for the first time.  I have been wanting to do this for so damn long, but haven’t had much of an opportunity to do so until now.  My parents are coming down to visit next month so I thought that it would be a perfect opportunity to finally take the tour and take my parents along with me.  They will enjoy it a lot.  Amanda will also be going to.

I can’t wait to take pictures and videos and report back on everything that I see in there.  I have heard nothing but awesome things about this tour and I am so excited!  Did I mention before that I am excited?

On to some other news.  I received an e-mail from the JDRF Promise to Remember campaign today because I had signed up to volunteer to be a campaign coordinator, but unfortunately, well maybe not unfortunately, but somebody else has already taken this position.  They also sent over a list of events that our local Members of Congress will be at during their August recess.  This is awesome, I can’t wait to try and get to some of these events and attempt to get 5-10 minutes worth of of the Congress person’s time.

If you would like to see this list also and see find out where your Congress reps will be during their recess send me an e-mail or just send me a note in a comment or on the contact me page.

Way to go JDRF, thumbs up on this one.  Way to help.

How to Take the Online to the Offline

Last week during DSMA a question was asked about how we can do more to create more offline efforts and offline communications.  My biggest efforts for the offline world are communicating with JDRF and ADA local chapters and trying to get them to communicate together and work together for a larger goal of getting people with diabetes the information that they need.  One piece of that information being access to the DOC.  How do we go about this?  It sounds all fun and dandy to have the JDRF tell every single person they talk to about the DOC, but how do we do it?

 

Unfortunately, these local chapters have national “rules” that they have to follow and they can’t just add something into their newsletter that is “endorsing” something unless they have approval.  So the first part that I would recommend is to reach out and just simply explain what it is that you are trying to accomplish and see how they react.  If they don’t respond via e-mail or letter or phone call, then try again.  These offices are under-resourced and sometimes it may take a while to get back to something because they just don’t have the manpower to get things done in a timely manner (which is why volunteers are such a huge deal to them).  If after a few attempts, they are not responsive then you have to take it to the next level.

Call them out…… politely….. on Twitter or Facebook and just ask them to participate themselves a few times in DSMA or just comment on some blog posts and lurk around on Twitter.  Once they see for themselves how amazing this community is, then they will be more responsive to your ideas.  Do not make enemies with them, they are some of the few friends that you have on your side, if you work it the right way.  Be friendly and be willing to work with them.  See if there are events that you can volunteer at and be able to speak with some of the attendees.  This is a way to get your foot in the door and help build a larger relationship.

Once you have established relationships with both, it is now time to try and get the parties together and start having them communicate a little bit.  I know that this is like asking a Democrat and Republican to agree with each other during an election year, but at the end of the day there is a common goal, to what is best for the majority.  The majority in this situation is the people with diabetes that are directly affected by the decisions that these organizations make.

The best advice that I can give is to not give up.  Do not give up on the local chapters.  That is where you are going to make the biggest impact.  National change comes from local outrage.  Do not settle for something that doesn’t work.  Strive for the best.  You must be willing compromise however, because not everything is going to turn out exactly the way that you want, but keep at it!

Another thing that you can do is constantly remind your endo or any other HCP about the DOC and how beneficial it is.  Doctors usually care about their patients enough that they want them to have access to support.  I know there are some legal issues that may arise with this having to do with a doctor referring a patient somewhere and then something going wrong.  However, it doesn’t hurt to try.  I am lucky enough to have an endo that is type 1 diabetic myself, so I am excited for the next time that I see her to try and get her involved.  Unfortunately, due to scheduling conflicts I haven’t seen my doctor in almost 6-7 months and I won’t see her again until November because of how booked the both of us are.  Not good, I know it sucks, but that’s for another blog post.

Jeffrey Brewer from JDRF at Roche Social Media Summit

My second part of my summary for the Roche Social Media Summit 2011 is going to be about the JDRF.  My history with the JDRF is long and in a good standing relationship.  I have volunteered a lot of my time with the local JDRF chapter and have donated a fair amount of money.  When I was doing consulting as a full time gig, I was donating 10% of all of my contract service fees to JDRF and anywhere from 20-50% of my affiliate commissions to JDRF.  I still do the same, I just don’t do as much contract work as I once did last year.  Recently, I had started to wonder if I was donating to the right place, maybe I should be sending it to the DRI instead.  I am very comfortable with my local chapter, but the national, ehh, I just wasn’t feeling it.

Jeffrey Brewer JDRF PresidentSo when I heard that Jeffrey Brewer was going to be speaking to us at our lunch on Thursday, I was like…. whatttt??!!?? The President of the JDRF is going to be here, speaking to us?  Awesome.  I was so excited to hear what he had to say.  I know that a lot of the time, speeches are scripted, and that is fine, because if you follow through on what you say, then it’s all good, if you don’t, well than you will obviously be held accountable then.

There were a lot of great things that Jeffrey touched on, but I wanted to just get into a few.  One was the fact that he mentioned they are re-branding themselves strictly as, JDRF, and not the Juvenile Diabetes Research Foundation.  What does this mean?  It means shedding the “Juvenile” part and focusing on Type 1 diabetes, and not just the Juvenile.  Don’t get me wrong, I want to make sure the kids are well taken care of, and like Trick Daddy says, “Love the kids”.  This shows me that they will be looking at the needs of type 1’s overall and not just “juvenile”, so I feel that they will be able to reach a further demographic, primarily, adults with type 1.  This is the area that they have been lacking and has left me wondering what the organization was doing directly for me.

The quote that stuck with me the most out of his entire time speaking was, “I’m all for a cure, but let’s do something about this now.”  I couldn’t agree with this more.  I always felt that the JDRF was focused on the cure, but didn’t focus much time on living with the disease and doing things to help during the time before a cure is found.  I’m living with this disease today, tomorrow and the next day, so I want things to be better for me now, and I hope and pray for a cure when it comes.  That quote made me gain a lot of respect for Mr. Brewer.

The other reason that I trust Jeff Brewer and his talking points is the fact that he came right out and said that he has a child with type 1 diabetes, but also that he made a lot of money in technology at an early stage of his life, so this isn’t about money for him, it’s all about the end results.

So, to end this post, let’s discuss what you can do now.  Reach out to your local JDRF chapter.  Let them know what items you would like to see them do more of.  But don’t just demand, offer to help with these items.  Offer to come up with the ideas, and plan, and volunteer and do what you have to do in order to get these tasks done.  I recently e-mailed my local chapter and asked for a list of dates of all of their events for 2012 and am waiting on the same list from the local ADA chapter and if there are any large events on the same day, then I am going to bring that to their attention (if they don’t already know).

Just remember, do what you can today to create an Outrage for Diabetes.  This isn’t just an IDF motto, this is for all diabetes related items.  It’s time to fight back against diabetes.