Category Archives: Advocacy

DPAC Joins DAA.

February 1, 2018 – 10:11 am

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.

By StephenS | Tagged , , , , | Comments (1)

Got a phone? You’re an advocate.

January 9, 2018 – 10:11 am

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.

By StephenS | Tagged , , , , | Comments (1)

Advocacy with a little “a”.

November 2, 2017 – 10:18 am

#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.

By StephenS | Tagged , , | Comments (1)

A new role.

October 10, 2017 – 10:18 am

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.

By StephenS | Tagged , , | Comments (3)

Same lies, different week.

September 22, 2017 – 10:41 am

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.

By StephenS | Tagged , , , | Comments (2)