Tag Archives: advocacy

Advocacy with a little “a”.

#DAM
#NDAM
#T1DLookLikeMe
#WDD
#WDD17

However you hashtag it, Diabetes Awareness Month is here again. And right behind it, a feeling of being overwhelmed by the sheer magnitude of all the posts and blue circles and everything else that makes up November for those of us living with and affected by this disease.

Then, sometime after we get over feeling overwhelmed, we move into the feeling guilty phase, where we compare ourselves to those who seem to have all their DAM Diabetes Awareness Month shit together better than we do. Especially when it comes to advocacy.

So before this gets out of hand, let’s stop long enough to take a big breath…

I’m fond of saying this to people, and I’ll probably say it tonight when I speak in front of a group from our area. This might even come as a shock to you, but here it is:

The effects of advocacy are large…
The steps we take to practice advocacy are often very small.

Hey, I want to take on the world too, and I want to bring the diabetes awareness to the masses in ways that have never been imagined before. Will I? Not this week.

Instead, tonight, I’ll sit with my neighbor, a dietician at Johns Hopkins Hospital, in front of about 20 Lions Club members. I’ll tell them about what it’s like to have to think about every single piece of food you put in your mouth, every time you eat.

I like to call that advocacy with a little a. I won’t be presenting in front of hundreds at some symposium on another continent. I won’t be crossing the country to organize and lead a protest. Instead, I’ll be heading off to Golden Corral and sharing what I know, so the people in attendance can share my message with others.

It’s a small thing to do, this advocacy with a little a. But sharing our story with others is just as important as symposia and protests. And just as powerful.

Each of us, regardless of our education level or job status or social media profile have a story to tell. It’s our story, full of chapters that many others have written, but no one else has experienced quite the way we have. We are the authors of our own epic.

Our unique perspective on life with diabetes may be exactly what another person needs to hear. It may be the exact message they’ve been searching for. Without you sharing your story, they might not receive the message you are uniquely qualified to deliver.

So before you get overwhelmed, or heaven forbid, feel guilty about coming up short this November, remember:

It’s not a contest.

The effects of advocacy are huge.

The steps we take to practice advocacy are often very small.

Advocacy with a little a is powerful, no matter what the calendar says.

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A new role.

Since I became part of this Diabetes Community, I’ve been encouraged by a number of people to tell my story… to raise my hand… to ask questions… to speak my truths.

I was encouraged by Christel, who wrote this blog post nearly two years ago, and has had me thinking about how to use my voice ever since.

I’ve been encouraged by Cherise, who, for the last five years, has reminded me constantly that my voice matters just as much as anyone else’s.

I was encouraged by Bennet, who told me over four years ago:
“I tend to think of us as more inclusive than exclusive. We need all the advocates we can get”.

Thanks to the encouragement of these friends and many others, I can now reveal that Maryland’s Secretary of Health has named me to the initial State Advisory Council on Health and Wellness.

The council is pretty big: 34 members. Sixteen are from groups like the State Department of Health, Department of Aging, and Department of Education; plus groups like the American Heart Association, The American Diabetes Association, Johns Hopkins Medicine, and the University of Maryland School of Nursing. The remaining 18 members are individuals like me. My term will last two years, during which I will attend two meetings of the full Council each year, plus at least four quarterly meetings each year working with a committee, hopefully on diabetes.

I don’t know where this is all headed. But I know this: the people in the room get to be part of the discussion.

We need people in the room.

So, as I have been challenged, let me challenge you:

– Think about and search ways to use your voice within your very own community.

– Remember that your voice matters just as much as anyone else’s.

– Don’t forget that we need every single advocate we can get.

I will also add: Look for places and ways to help others find their voice too.

I’ve often wondered if my writing and podcasting might eventually lead me toward more of a public service role than I had imagined five and a half years ago. I guess the answer is Yes. In fact, my service is now dedicated to my Diabetes Community, and my entire community on a statewide level.

My encouragement to you is to get into the room. Break the door down if you have to. Be part of the discussion.

People find their roles in ways they often cannot foresee when they begin a journey. The lovely part is enjoying the journey, and making each role as meaningful as possible. I’m looking forward to this next chapter in my life.

“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.

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


More people, more ideas.

We all know and understand that the cost of diabetes is getting cray-cray. Our Wednesday #DSMA Twitter Chat on September 21 got pretty deep into this discussion, and it wasn’t everything that was on the agenda to discuss that night, but it quickly became the single subject of the chat. Sometimes, important issues just take precedence.
dsma1
Our frustrations lie in a lot of places: drug companies, device makers, insurance companies, “pharmacy benefit managers” (I think I will always have quotes around that term—they don’t deserve to be taken seriously), and even our government, who, as I’ve heard so many times, seems to be just “checking our box”, but not really doing as much as they can to help us.

So there’s a lot of blame to go around. What are the solutions?

I’m not sure I have the perfect answer to that. I know what I would like to see happen. Will what I would like to see happen… actually happen? It hasn’t yet, although it has in small ways. But I don’t know if I have the ultimate solution. Or the Next Great Idea. I also know that often, there is more than one way to reach a goal. But…

There have to be certain elements involved in a successful campaign to “Take Back our Diabetes”, to paraphrase certain U.S. political commentators. To me, those elements seem to be, in no certain order:

– A clear Demand (let’s stop calling it an Ask, okay? It’s time to start demanding what we want)

– Enough people willing to demand what we want. Hint: it’s a hell of a lot more than we have now.

– Enough people willing to keep demanding, especially when we get stonewalled. Let’s remember the next diagnosis, the next family living with diabetes. Even if we’ll never see our success, we can keep demanding so future generations won’t have to work so hard. We want them to have it better than we do. I want to always remember this.

– Lots and lots of new ideas. As I mentioned in the Twitter chat, more ideas increases our chances of coming up with great new ideas.
dsma2
– Someone (hopefully, more than one someone) who is well connected and sympathetic to our cause. This could speed things up a lot.

That’s my list so far. I realize I’m not exactly the Einstein of social activism.

To be fair, there are companies providing assistance to people who need it… ALWAYS be sure to check the website for the drug or device you’re using (or interested in) to see if you might be able to qualify for a little help. Even insurance companies have resources to help deal with claims issues. Your state’s insurance commissioner can often be a great place to voice your concerns. All this can be hard sometimes (PWDs have enough to deal with already), but at least it’s something.

That said, it’s fairly clear that 1) We have major issues regarding diabetes affordability and access; and 2) Governments/Companies/Insurance/”PBMs” will need to be forced into action to help solve pricing and procurement problems. That will only happen when it becomes clear that this is a public health and safety issue for everyone living with diabetes and not living with diabetes, and it will only cease to be so when we get what we demand.

Feel free to fill in the blanks.
 
 
Hat tip to Meri at Our Diabetic Life for her inspiring posts last week.

And hat tip to Renza at Diabetogenic for her post too.

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