Tag Archives: DPAC

Friends for Life Orlando 2017.

Full disclosure: I was able to spend last Wednesday, Thursday, and Friday at Friends for Life in Orlando, Florida. Diabetes Patient Advocacy Coalition paid for my travel. All opinions are unquestionably mine, and it was my honor to advocate before so many wonderful people.

Just like last year, I worked the DPAC booth in the exhibit hall at Friends for Life, the largest gathering of People With Diabetes in the country. I was also lucky enough to sit in a couple of sessions and spend time once again with diabetes friends.

I remain grateful for the opportunity to advocate for those living with and affected by diabetes, and in the USA, DPAC is the best, easiest way I know of to make your voice heard by elected officials and policy makers across the country. If you haven’t yet, please download the DPAC app now and add your voice to the growing chorus advocating nationwide.

There was quite a bit of lively discussion during the various advocacy sessions led by DPAC CEO Christel Marchand Aprigliano and Stewart Perry. People were asking questions after the sessions and letting their friends know about DPAC too, and that gives us all a great feeling. I know our advocacy efforts will only grow from here.

The rest of the conference (or at least the part that I was there for) was wonderful too, as always. The Children With Diabetes staff really goes out of their way to make everyone feel welcome… even the exhibitors.

I’m not sure I can tell you anything special about this year’s gathering though. I think there are a number of reasons for that.

First, think about it: there really aren’t any amazing product launches that are new. Medtronic’s 670g is fairly new, but Medtronic was once again absent from the largest concentration of Type 1 diabetes patients in one place anywhere in the country.

There weren’t any recent research announcements either. Nothing that makes patients (and especially parents) excited for the next improvement in diabetes management.

Plus, I think Children With Diabetes has a problem. It’s a wonderful problem created by their wonderful efforts to bring additional sessions to adults, and emerging adults, and teens and tweens, and parents, and other caregivers.

I guess what I’m saying is that I don’t want CWD to change any of that. Their challenge going forward will be to avoid having their amazing inclusiveness create a lot of smaller gatherings, rather than what has always felt like one big gathering of diabetes family.

That’s a tall order. But if anyone can pull it off, I suspect Jeff Hitchcock and his fabulous team can do it. Let’s face it: nothing stays the same. It’s not avoiding change, but instead embracing change and making it work for everyone, that helps great things evolve. And Friends for Life has always been a great thing.

In addition to that, there was one part of Friends for Life that I don’t usually pay much attention to… but it really hit me this year.

I took a couple of moments to go through the Quilt for Life exhibit that is always set up in the back of the hall. The display includes hundreds of quilts depicting various diabetes issues, interests, and people living with this insidious condition.

So to finish up, here are a few photos of quilts I noticed. I don’t know why yet, but the last one really got me, and it still does. I practically broke down right on the exhibit hall floor when I saw it. How does it affect you?



I am under no obligation to do so, but I should mention that there is one more Friends for Life gathering coming up this year, and it will be in my part of the world. Friends for Life Falls Church will be coming to the D.C. area October 6, 7, and 8. To find out more, CLICK HERE.

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So many questions. Damn few answers.

They represent the residents of their states in the United States Senate.

– They must be at least 30 years old.

– They must be a U.S. citizen for at least 9 years.

– They must be an inhabitant of the state they represent.

As a citizen of my country, I have a right to expect that members of the United States Senate are serving the people they represent. All of the people they represent, whether those people voted for them or not. I mean, how many of the corporations spending money to help them get elected are actually domiciled in their states, right?

After a lot of closed door scheming, the Senate majority leader decided it would finally be okay to release the onerous upward-wealth-distribution-disguised-as-healthcare legislation he intends to have a vote on this week. On the surface, it would seem that the party in power might have trouble getting the necessary 51 votes to pass their death sentence to Americans. They only have a 52 to 48 seat majority, plus the Vice President available to break any ties, if necessary. That means if they have 3 defectors on this legislation, they won’t be able to pass it.

But… obviously, stranger things have happened in politics, especially in the past year or so. The majority is not taking any chances. They are working hard, maybe harder than they worked on the legislation that they’re trying to ram down people’s throats, to change the minds of the five or so GOP senators who are Nos at this point.

Well, I don’t have to be the second coming of Alexander Hamilton to know that this is not how American democracy is supposed to work. I don’t have to be the second coming of Edward R. Murrow to know that American citizens have the right to know what their elected officials are up to, and what they stand to gain from turning their backs on American values. I don’t have to be the second coming of Rev. Martin Luther King Jr. to see that not only partisanship, but racism is alive and well in the U.S. Senate.

I have a lot of questions. Why do they think that saving money should be the only criteria for what they’re doing? If your child is sick, aren’t you going to do whatever you can to help them feel better, regardless of the cost? Why doesn’t congress feel this way? Why is there a wealth distribution toward the already excessively rich tied to health care?

Additional questions include: What are they so afraid of? Why must it be rushed through to a vote? Why do these Republican senators hate the Americans they represent so much?

To be honest, I think they hate the previous president more than they hate me. They really hate the previous president. You and me, they couldn’t care less about.

Why else would they want to take away pre-existing condition protections? Why would they want to subject hospitals, care facilities, and Americans like you and me to potential bankruptcies? Why would they want to kick veterans off of Medicaid?

We’re left with a lot of questions, and damn few answers.

But I know a way to silence those questions. That would be by stopping this hateful, un-American legislation. If these senators could just set aside their hatred, and in some cases, their racism toward the previous president, we would be left with only one question:

How do we make health care better?

That’s a goal that every American would be happy to support. Including this American.

DOWNLOAD THE DPAC APP on your Apple or Android device –
Use it to contact your elected officials and encourage them to vote No on BCRA.
Your voice matters… and you can speak it to your elected officials in less than one minute using the DPAC App.

“I’d rather be right than…”

There are countless quotes out there of famous people using the phrase, “I’d rather be right than…”. I thought a lot about those this week as I’ve watched Congress consider healthcare legislation again.

”I’d rather be right than be president”—U.S. Representative Henry Clay, 1838

Only there isn’t anything right about it.

The latest twist in the tale involves the MacArthur amendment, written by Republican House Representative Tom MacArthur of New Jersey, which relieves states from complying with protections for anyone living with a pre-existing condition. Oh, and those essential benefits that all insurers must provide through the Affordable Care Act? Under the amendment, states will get to decide what those essential benefits are. If there will be any at all.

Then there are the protections that state that everyone in the Obamacare exchanges must be charged the same for insurance, whether they’re male or female, living with a pre-existing condition or not. The MacArthur amendment provides an avenue for states to request a limited waiver in these cases, which would allow them to charge less for people not living with a pre-existing condition.

That means people who do live with pre-existing conditions could and would get cordoned off into high-risk pools that provide less coverage, but charge more for premiums. If this passes, someone my age, living with diabetes, could be looking at spending something north of $20,000 per year for health insurance.

But that’s okay, Republicans say, because they’re throwing an extra $8 billion into a fund to help those with pre-existing conditions. By my math, that’s a little more than $47.00 for everyone living with a pre-existing condition. Using our $20,000 per year premium, that’s less than 3 percent of one month’s payment.

“When history looks back, I’d rather be judged as solving problems and being correct, rather than being popular”—President George W. Bush, 2006

Once again, we are literally fighting for our very lives.

Perform a Google search for politics and morality, and you’ll get a lengthy list of online articles telling you that either morals do or don’t belong in politics. Regardless of how you feel about morals and politics, in this instance, morality is sitting firmly on the sidelines. It’s not getting invited to this dance. Don’t forget, Congress tried to exempt themselves and their staff from this legislation.

”I’d rather be right than consistent”—Winston Churchill, 1956

Actually, I think this situation is a little backward. The truth is, Congress would rather kill Obamacare than be right. They would rather let Americans die than be right.

There’s very little time. The House expects to vote on all this today. As of this writing, just 22 or 23 more No votes were needed to kill this cruel legislation.
THIS PAGE has every representative listed, links to their websites, and most importantly, their phone numbers.

Want to make it easier than that?
CLICK HERE to download the DPAC app. I’ve mentioned before how Diabetes Patient Advocacy Coalition makes it so easy to contact elected officials. Now, with the DPAC app, you can get timely alerts, take action without going to a website, and insert your own diabetes voice into the conversation faster and easier than ever before.

Let Congress know that you’re not going down without a fight. And if they try again, you’ll fight again. Our right to equitable, accessible, affordable care hangs in the balance. American lives are at stake.

Diabetes By The Numbers (Part 3): Christel Marchand Aprigliano and DPAC.

Time now for the third and final part of my conversation with Christel Marchand Aprigliano. If you haven’t yet listened to the first two parts of our chat, please go back after this episode and listen to them, because they are well worth your time.

In this episode, we talk about Diabetes Patient Advocacy Coalition, or DPAC. Christel and Bennet Dunlap started DPAC as a way to help amplify the voice of the patient to elected officials and policy makers. They provide a slew of tools that empower friends, family, and fellow advocates to take action on a number of diabetes-centric issues. Often, in less than one minute.

Note: I volunteered with DPAC in 2016, and plan to do so again in 2017.
Also, I should mention that this interview was recorded after the November 2016 election, but prior to the beginning of the 115th U.S. Congress in 2017.

Thanks so much to Christel for sitting down for this conversation. Enjoy, and get your advocacy on!
DBTN

Reference Material – Click below for more information on this topic

Christel Marchand Aprigliano writes about diabetes at:
ThePerfectD.com

You can connect with Diabetes Patient Advocacy Coalition, or DPAC, at:
DiabetesPAC.org

Your Story Is Important. And it’s critical right now.

As you know from the UHC/Medtronic uproar last week (CLICK HERE to read my take), diabetes advocacy has taken on a renewed sense of purpose.

But when I mention diabetes advocacy, the two biggest reactions I hear from people are: I don’t have the time; and I don’t have the platform.

What if I told you that you do have a platform? And what if I told you that taking advantage of that platform could save time over, I don’t know, writing a letter and sending it in the mail. Or creating a website and posting to it. Or going onto Facebook and shouting to all of your friends and family, most of whom agree with you anyway?
Print
Enter the Diabetes Patient Advocacy Coalition. Just as they have done for the CGM Medicare and #SuspendBidding issues for seniors in the USA, DPAC has created a page (your platform) where you can tell your story about navigating the not-so-enchanted forest of healthcare. Whether it’s the latest debate about exclusive agreements with device makers, or unexplained formulary changes that force you to switch from the insulin that works best for you, you now have a place to voice your frustration and share your specific details.

CLICK HERE to access your very own platform for change.

Diabetes Patient Advocacy Coalition will be compiling the stories submitted and sharing them with the Diabetes Community, the healthcare universe, and our elected officials. So tell your story… no one else knows it as well as you. Speak from the heart. Use this opportunity to provide your own brand of diabetes advocacy, and help others who are undoubtedly going through the same things.
DPAC-Tweet-In
One additional item I’d like to share with you too: There will be a DPAC Tweet-In on Thursday night in the USA beginning at 8:00 ET. It will be an hour where we’ll get together and send advocacy tweets on the #SuspendBidding and #DiabetesAccessMatters issues, and much more. There’s a web page that gives you the entire step-by-step process so you don’t have to ask “where do I start?”. You’ll find that page HERE.

All are welcome, and in fact encouraged, to submit their story. More than that, all are needed to enact real change for our community. The best part is, Diabetes Patient Advocacy Coalition allows you to perform that advocacy on a real level in a very easy way.

Diabetes advocacy should not be the domain of a few. Take just a couple of minutes today… a couple of minutes Thursday night. I promise you that your voice will be heard. You will make a difference. And you will feel good about it. We have the numbers. Now let’s work on putting our numbers to use not only for ourselves, but for the betterment of everyone living with a chronic condition.

Thank you for your advocacy.

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