Tag Archives: March for Health

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.

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March for Health

I’m one of the lucky people in this world who has a Monday through Friday job. Every weekend off. Nevertheless, ten, fifteen years ago, I spent many Saturdays getting up early, getting to the office, and working for four to six (or even eight) hours. I was convinced that there were many things to do, and the quiet Saturday surroundings would help me tackle those without the distractions of the phone or people coming to my desk all the time. It was a lot of extra work for exactly zero reward. It’s a long story about how I got here, but I’m happy to say that I don’t do that anymore.

Instead, this past Saturday, I got up early, drove to the Washington, D.C. suburbs, and caught the Metro into the District. I am even happier to say that this effort was more than worth it.

Photo courtesy of Dirk Gassen


Saturday, April 1st marked zero hour for March for Health, the culmination of a nationwide effort to rally for health care as a human right. In cities large and small, people gathered, signs in hand, purpose in mind, to share their concern that the discussion on health care needs to result in affordable, accessible, equitable care for everyone.

I was a very small part of the D.C. march, which made its way to Upper Senate Park on the grounds of the U.S. Capitol a little after 12:30 Saturday afternoon. I was fortunate enough to speak for about six and a half minutes, trying to help the audience focus on the fact that there are many of us out there living with chronic conditions, and collectively, we are making a difference. The text of my speech is at the bottom of this post.

But first, I want to congratulate march organizers, two of whom were interviewed here last week on the podcast. Many of the march leaders had never put anything like this together before. Wherever they were, they worked extremely hard to gather volunteers, keep everyone informed about places and times, get parade permits, do outreach, and solicit media coverage. When you consider where this movement started in late January, their accomplishments have been astounding. I couldn’t be prouder to have been a part of what they created.

One more thing: I fear we will need more marches, more e-mails, more people speaking about the importance of getting the insurance, care, drugs, therapy, and the rest that all of us living in my country deserve. In that respect, March for Health is just a beginning, but an important beginning, and a clear indication that there are many who are willing to stand up for what’s important to everyone.

Now, the speech. I’m including a couple of extra photos of my own after. If you read this space regularly, you might notice that I plagiarized myself a couple of times here. I started out talking about my diabetes, but tried to bring it around to the fact that everyone lives with or loves someone who lives with a chronic condition like mine. As a unified group, we can affect policy, and even elections. Here we go:

Hello… my name is Stephen Shaul.

I’ve lived with Type 1 diabetes for 26 years. My daily life is an endless stream of glucose checks, math calculations, and insulin injections. I wear an insulin pump and a continuous glucose monitor. I see an endocrinologist, who devises strategies to help me live the best life I can with this disease.

But you know, that doesn’t make me unique in this country. More than 29 million people in the United States live with diabetes. Heck, as chronic conditions go, I’m not even unique in my own family. My spouse lives with A-Fib, my mother lives with COPD, my father is a cancer survivor. One of my brothers in Ohio has five children, one of which lives with Asperger’s Syndrome. In fact, three of his kids have tested somewhere on the autism spectrum.

And that’s the thing. You know, I’ll bet that if we could somehow get all of America into one room and ask the question, do you or a loved one live with what some would call a “pre-existing condition”, just about every hand in the room would go up.

That’s why there was so much resistance to the American Health Care Act. People from every part of the health care spectrum weighed in to say that regardless of their political leanings, they and their loved ones come first. With one loud voice they stood up and said, when it comes to what’s really important, people are always more important than profit.

All over this country, Republicans and Democrats have children living with diabetes. Liberals and Conservatives have spouses and partners who have to manage their rheumatoid arthritis every single day. In every corner of this land, card-carrying members of the GOP, and the party of the New Deal, and Independents too, have parents who need and deserve access to things like flu shots and mammograms.

So when the opposition began to build against AHCA, it wasn’t all based on opposition to repeal and replace. It wasn’t all about policy and tax credits.

Instead, it was opposition to taking away protections for our loved ones, shoving them into high-risk pools that would cover very little, if any, of the drugs, treatment and technology they are afforded today.

It was opposition from people who already pay thousands of dollars per year to stay alive, saying that they shouldn’t have to pay thousands more for premiums, then pay even more on top of that because those premiums wouldn’t cover as much as they’re being covered for today.

It was opposition to, as our Nashville march organizer told me this week, being one lab test result away from being deemed uninsurable.

When the people most dear to you are in danger of losing their protections of access to treatment, insurance, drugs, and therapy, we all understand: the stakes are life and death. What’s been missing from lawmakers is the acknowledgement that those who do want to repeal and replace, and those who don’t want to repeal and replace, all have children, spouses, partners, and parents who need and deserve care. We all have the same needs, and the number one need of all is to keep ourselves and our loved ones alive. The number two need is to stay as healthy as possible without going broke.

So you know what? We’re not unique! There are millions upon millions upon millions of us in this country. Together, we made the phone calls, we sent the e-mails, we attended Congressional town hall meetings. And our efforts worked. Our elected officials responded. They pulled the legislation.

And if we have to, we will do it again!

Now, we’re hearing that the people who work in this building behind me are considering another try at health care reform. As they do, we need to be sure they understand that if they’re talking about doing something different with health care in the USA, the end result MUST BE BETTER for all Americans than the law it seeks to replace. All Americans, including and especially the millions most affected by changes to existing law.

No, we’re not unique… but we’re powerful. We can and we have influenced Congress. We can sway elections.

So… when Congress starts talking about “repeal and replace” again, make sure they know:

It cannot be repeal and deny.

It cannot be repeal and bankrupt.

It cannot be repeal and left for dead.

Last time I checked, people weren’t dying in the streets from Obamacare. Hospitals aren’t going bankrupt due to the Affordable Care Act. As the debate on health care goes on, let’s remember those most dear to us, who might also be living with a chronic condition. For me, that’s my wife. My parents. My nieces and nephews. My friends living with chronic conditions. If their needs aren’t met, my needs aren’t met.

Let’s face it: We’re now talking about cars that can drive themselves and using drones to deliver packages to our homes. Meanwhile, lawmakers have relegated healthcare to a yes you can, no you can’t series of decisions like a political football. Friends, that’s 20th Century thinking in a 21st Century world. And it’s a 19th Century way of thinking when it comes to doing what is best for the people living with chronic conditions like mine.

Let’s remind those who still don’t get it that any new healthcare legislation needs to provide more care. It needs to cost less. It needs to help save more lives. As the debate on health care continues, let’s keep the focus right where it belongs: on American lives.

Thank you.

The beginning of the D.C. March for Health, Lincoln Park, Capitol Hill


Marchers chant their way down East Capitol St NE toward the U.S. Capitol


Diabetes By The Numbers: March for Health (part 2)

How do you do two interviews on the same subject on different days within the same week? It helps if something big happens on one of the days in between interviews.

“Everything in my life, every decision I’ve made throughout my life, has always been framed around, ‘Will I be able to get health insurance?’.”

In part two of my discussions with leaders of the March for Health, the wonderful organizer of the Nashville march, Cara Richardson explains perfectly why, even though the Speaker of the U.S. House of Representatives pulled his “repeal and replace” healthcare legislation from consideration last Friday, there is still a need for a March. She explains exactly why access to care and spreading knowledge of patient’s rights are such an important part of her life.

Trust me… this will be well worth your time.

DBTN

Reference Material – Click below for more information on this topic

Cara Richardson is organizer for the March for Health in Public Square Park, Nashville Tennessee, Saturday, April 1st at 11:00 a.m. To find out all about March for Health Nashville, or to find another city where you can march; or to help support March for Health with a donation, go to:
MarchForHealth.org

March for Health still needs volunteers who can help with everything from e-mails to fundraising to setup & cleanup. To become a March for Health volunteer, email:
volunteer@marchforhealth.org

Cara writes about her life with diabetes at the blog Every Day, Every Hour, Every Minute:
countrygirldiabetic.blogspot.com

Diabetes By The Numbers: March for Health (part 1)

Wow. What a turn of events. Last Thursday, when Leyla Mansour-Cole and I recorded this interview, we were less than 24 hours away from the unexpected move of the Speaker of the House of Representatives pulling the Republican’s “repeal and replace” health care legislation from consideration.

Still, there is a lot left to debate when it comes to health care in America. And that’s why people all over the country will be participating in the March for Health Saturday, April 1. So many of us are affected by the way care, drugs, and medical technology are delivered in this country. That’s a lot of what we’ll be talking about in this episode.

And don’t forget to listen to Wednesday’s companion interview on March for Health with Cara Richardson. Together, these two are the model of what happens when you see an important issue and throw yourself head first into the discussion, making a huge, positive impact.

DBTN

Reference Material – Click below for more information on this topic

Leyla Mansour-Cole is National and Washington, D.C. coordinator for the March for Health, Saturday, April 1st. To find a city where you can march, or to help support March for Health with a donation, go to:
MarchForHealth.org

March for Health still needs volunteers who can help with everything from e-mails to fundraising to setup & cleanup. To become a March for Health volunteer, email:
volunteer@marchforhealth.org

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