Tag Archives: DPAC

8 Questions.

You know, sometimes things roll around in your head and you just need to get them out so you can let them go. Like these eight questions:

1. Have you ever used your BG readouts to choose lottery numbers? Just me? Here’s the game:

Let the Powerball or Mega Millions jackpots get really high. Then take your BG number from either your CGM or your glucose meter throughout the day and play those numbers. Of course, you have to use just two digits, so if the number is 123 or 223, you play 23. If the number is 84 (the jackpot numbers only go up to about 60), you switch it so you play the number 48.

I’ve never won the lottery with this scheme, but if I did, wouldn’t that make a terrific story?

2. Does anyone ever think that a president who would fire his Secretary of State via tweet would actually care about anyone living with a chronic condition?

Ever?

3. Would you rather have a CGM sensor that you can stop and restart for weeks, or one that requires exactly zero fingerstick calibrations for only ten days? I think we’re going to find out the answer to that throughout the rest of 2018. At any rate, this is the way of the future, so love it or leave it, this seems to be the way we’re going.

4. After hearing the recent news about Facebook not only selling user profile information, but also the ability to access mobile device data without our consent (and don’t try to shame me for this practice by reminding me that I agreed to the terms of service when I created my account around a decade ago)… are you more reluctant to upload all your device data somewhere?

If I were going to run for president, or the senate, or if I would be up for a cabinet post, maybe. But I think my diabetes device data is pretty low on the official russian operative priority list.

5. What’s your next big focus in diabetes advocacy? Is it insulin affordability? Is it learning more about the FDA drug approval process, or finding out about the tricks pharmacy benefit managers play with formularies? There are still many avenues of diabetes advocacy we can pursue, and one amazing place to find out and take action on them all.

If you live in the USA, go to diabetespac.org and download the DPAC app. Use it to join the chorus of caring patients, caregivers, and other Americans who are taking action on these and even more issues in quick, easy steps that will have you feeling great about advocacy without spending every waking hour wondering how you’re going to squeeze it into your schedule. And one of the best things about DPAC is that they’re totally non-partisan. There’s room for everybody.

Use the easy button. Get the DPAC app.

6. If I donate to a JDRF or ADA ride or walk for someone else, but don’t actually participate in any of them myself, am I a bad supporter of those causes?

I happily donate to others’ JDRF or ADA fundraisers. But I’ve never ridden in a JDRF ride. After doing a few ADA rides and paying all or nearly all of the minimum contribution needed to participate each time, I’ve given up on those too. I’m sure they’re still wonderful happenings, and I still have the energy to do them. But at this point, the price of admission is just too high. Right now, I’m okay with helping four or five people reach their goal of participating, instead of helping only myself. Is that wrong?

7. Is lack of appetite a sign of old age? I’m just not the foodie that I once was. I eat far less today than I’ve ever eaten as an adult. If I could eat anything right now… I don’t think I could choose anything. For the most part, I’m just eating for sustenance. I’m not losing any weight, but I’m certainly eating less.

I’m exercising more too, if that matters. But I’ve always been active anyway.

Finally…

8. What should I do on my birthday? It’s next week. It’s not a milestone birthday, so I’ll probably just go to work and come home and be grateful I can still go to work and come home.

I think winter has lasted far too long around here.
 
 
Great… now that I have that out of my head, I can go play those lottery numbers. What have you been thinking about lately?

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DPAC Joins DAA.

News broke this week that Diabetes Patient Advocacy Coalition has joined forces with the larger Diabetes Advocacy Alliance. I’ve spent some time volunteering for DPAC in the past, but regarding this announcement, I don’t know any more than what is publicly available. Let’s take a look at that:

Diabetes Patient Advocacy Coalition is a 501(c)4 organization that helps to promote important diabetes causes before local, state, and federal elected officials and policy makers. DPAC has been successful too… testifying before congress, taking part in important discussions on insulin pricing, and many other achievements.

They’ve delivered an extremely powerful app that helps individual citizens take action on issues quickly and easily. They’ve educated and informed before many, and for what it’s worth, I’ve been proud to represent them at Friends for Life events over the past two years.

Diabetes Advocacy Alliance is just what its name indicates: an Alliance of groups dedicated to advancing the causes important to people living with diabetes. In joining DAA, DPAC will be joining the American Diabetes Association, the American Association of Clinical Endocrinologists, the American Association of Diabetes Educators, the American Medical Association, and others in an effort to collectively amplify all our voices.

The impression I get here is that DPAC is still going to be DPAC. But we’re all aware that there are a number of disparate voices out there, all advocating for diabetes while advocating for different things. Where we’re able to join forces, we appear stronger to the people we’re advocating to.

Joining this alliance should help DPAC partner with other organizations to raise awareness and push legislators to act on our behalf. And in my book, that’s always a plus.

You may ask… what about the corporate organizations that are also part of Diabetes Advocacy Alliance? Is that okay?

Well, first of all, they wanted to be part of the alliance, or they wouldn’t be there. They could have ignored this group, or even spent time and money to try to render it ineffective. Instead, they climbed on board as members.

Second, wow… an organization with members who may not always have the same priorities at the same time… sounds like Washington! If they can do it, DAA can do it too. And believe it or not, there could be times where my goal and a company’s goal may actually be the same. Maybe more often than you might think.

DPAC’s CEO, Christel Marchand Aprigliano, put it this way in the press release announcing the news:

“With the current U.S. healthcare system spending more than 1 in 5 healthcare dollars on diabetes, there has never been a more important time to advocate for the long-term health of our community.”

I could not agree more.

I’m always interested in how new collaborations will turn out. I know that the missions of Diabetes Patient Advocacy Coalition and Diabetes Advocacy Alliance are great for partnering for more people, more effectively, more often. Here’s hoping that my goals remain their goals, and those goals have a greater impact through this collaboration.

Got a phone? You’re an advocate.

You know, 2017 was quite a year in health care in the USA. So, what’s happening in health care in 2018?

Pretty much the same things.

Any successes that were achieved in terms of awareness on drug pricing, or access to care, or anything else have been met with continued explanations and excuses, but not any real progress. In all fairness, the rollout of Eli Lilly’s Basaglar and Novo Nordisk’s Fiasp have been positive developments.

But they won’t mean much if few can afford those, or if insurance companies continue to take away choice from patients by only allowing one brand of drug to be on a plan’s formulary, while forcing patients on the non-formulary brands to use something that may not work best for them (a practice known as non-medical switching).

In 2017, successes that came from helping to defeat the forces trying to rip apart PPACA (Obamacare) were hurt by repeal of the individual mandate, the provision in PPACA that reduced overall costs by requiring everyone to have coverage. That happened in the “tax reform” package passed and signed into law last month.

There are other questions, of course… what’s going to happen with the Special Diabetes Program, used to help fund research? What about CHIP, the Children’s Health Insurance Program, which covers many disadvantaged kids living with diabetes? It appears that the furor over partisan politics has left many previously no-brainer health care initiatives in limbo.

Buckle up, kids. It’s going to be another crazy year of fighting to hold on to things that we’ve already fought hard for many times. As a result of congress and the president blowing a trillion and a half dollar hole in the federal budget so they can help insurers and drug makers (among others who were already making more money than ever before), every single piece of spending is in danger of being cut to help make up the voluntary deficit they created.

Does this make you mad? It makes me mad. What do we do now?

First of all, we download the DPAC app. Diabetes Patient Advocacy Coalition will keep you updated on hot-button topics, and most of all, give you easy, quick ways to add your voice to the conversation. And wow, do we need your voice added to the conversation.

In addition, the American Diabetes Association and JDRF are doing a super job of advocating on our behalf, and they could use your support. They are also employing easy, quick tactics to help people living with and affected by diabetes join the advocacy effort from wherever they live. Get on their advocacy mailing lists and start communicating.

And don’t forget, you can always use your phone to actually speak with a person too. Contact your congressperson, senator, or even your president and let them know the score. Let them know you won’t be going away.

We don’t have to go all the way to Washington to share our personal stories. We don’t have to schedule time with a member of congress, hoping to get a chance to speak. We can speak now, loudly, and in unison, and easier than ever before.

If you have a phone, you are an advocate.

2018, you have big shoes to fill.

Well, it’s been a heck of a year, hasn’t it?

2017 has been the most full, and probably most fulfilling, of my years here at Happy Medium. This year has been quite a bit different from previous years too. Different in a good way.

January started with the beginning of my life on Dexcom, inserting the G5 and employing it as a useful tool in my diabetes management. Even if I complained about sensor and transmitter issues, and having to wear one more thing.

February included participation in the second Diabetes Podcast Week. I really love podcasting, and I wish I had more time to fit it into my schedule. I also shared a few notable quotes, and why they inspire me.

In March, I reported for the fifth time on what is now the JDRF TypeOneNation Summit in Bethesda. They’re getting better at bringing adults into the conversation. I also took the time to remind everyone that Nobody Ever Died from Obamacare.

April 1st marked the March for Health, in many cities across America. I was fortunate enough to be able to speak at the march in Washington, D.C., in the shadow of our nation’s capital. I also shared a story from my personal life that showed me how important it is to support your friends. It wasn’t about what I did… it was about what I learned.

Diabetes Blog Week returned in May this year, and it was wonderful, as always. Also in May, I took time to attend a public workshop at the U.S. Food and Drug Administration. I learned a lot about FDA’s Center for Drug Evaluation and Research, and the drug approval and after-market inspection process.

June brought about the rollouts of the new Accu-Chek Guide glucose meter, and (finally) the Dexcom G5 Mobile App for Android. I couldn’t be happier. I finished up the month with a meeting among diabetes friends, and it reminded me that we need each other now more than ever.

In July, I completed my local 5k run again, and did fairly well for a 55 year old who is a slow runner. I also attended another in the continuing #BeyondA1c discussions, and it was amazing, even if the information shared, at times, felt like I was trying to drink from a fire hose.

August posts included a note on conversations and my reaction to them. “It is always about enlightenment and being more comfortable being myself, and being myself with my diabetes.”

September was a hard month. I went through an unexpected emergency appendectomy, which included a very unexpected complication. Fortunately, I’m all better now.

In October, I shared my new role as a member of Maryland’s Advisory Council on Health and Wellness, and how this new role means I’ll be serving more than just the diabetes patients in my state. I’ll be serving all of the citizens of my state.

In November, I tried to remind everyone that while advocacy is often practiced with a little “a”, the effects of that advocacy can be very big indeed. I also went to a meeting at the U.S. Department of Health and Human Services, where I discovered that I was Enlightened, but Unknowing.

And in December, I’ve talked about doing a trial of the new-to-the-USA Freestyle Libre CGM. And I presented a list of 8 gifts that People With Diabetes could really use right now.

I would be remiss if I neglected to mention the two wonderful Diabetes UnConferences that took place in February and October. Or the fact that we’ve sent out another 15 or 20 Champion Athlete With Diabetes medals. These are feel good stories every single time. I also love hosting the Diabetes By The Numbers podcast, and hope to bring you more episodes in 2018. And thanks to Cherise Shockley and the followers on Twitter for the privilege and fun times shared while hosting some of the #DSMA chats throughout the year.

Thanks also to Christel Marchand Aprigliano for the honor and privilege of representing DPAC at Friends for Life events in July and October. We learn from heroes. We are supported by friends.

This is where I express my gratitude to you for visiting this space on a regular basis… I could do this without you, but it wouldn’t be as meaningful or as fun. Also, I hope that you have had a full and fulfilling year too. Finally, I want to strongly express my desire for all of us to work toward less division, less cost, more access, more support, and mostly, less burden of living with diabetes.

Goodbye 2017… you were a whirlwind, but a remarkable year.

Hello 2018… you have some pretty big shoes to fill.

Same lies, different week.

They’re back.

Lawmakers in the U.S. Senate are trying to take away health care from the Americans they represent. Again.

The newest effort, the Graham-Cassidy-Heller-Johnson proposal, or Graham-Cassidy, as many are calling it, is pretty much the same effort that failed earlier, in a different package. I guess the only thing different about this one is that this time, four guys are actually stupid enough to attach their names to it.

But the basics of the bill are the same as others: Remove Affordable Care Act subsidies and replace them with block grants. Nice idea, but it really never works. And even if it sort of works, it only works on a state-by-state basis. So the truth is that, best case scenario, many patients in many states would have significantly reduced access to care. Even less access to care than before Obamacare was passed.

The bill also proposes to defund Planned Parenthood (again). Like I’ve said before, you can’t do that without saying to millions of American women that breast cancer screenings and other preventative procedures aren’t important to you. That’s a hard sell.

The bill also states that it will “protect patients with pre-existing medical conditions”. Well, excuse, me, but I already have that protection today. This bill doesn’t promise anything new on that, except the assertion that this “protection” they speak of would also come with significantly increased premiums for people living with pre-existing conditions like diabetes, high blood pressure, and yes, pregnancy.

Senator Lindsey Graham, in repeated interviews, has stated that I don’t have to worry, that I would still be able to purchase insurance if this passes. Hey, look, I can still purchase a $120,000 Tesla, but I can’t afford it. This is the same thing: Making health care a luxury product, rather than a right for all Americans.

It still comes back to the same thing for me. If a “repeal and replace” bill can’t offer at least the same access to coverage, at the same cost, as the Affordable Care Act does today, it’s going to be a non-starter for Americans. Especially since half or more of us live with those pre-existing conditions.

We’re tasked once again with defending our right to health care. Contact your elected officials right now. Once again, American lives are at stake.

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

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