Tagged: diabetes advocacy

If You Do One Thing Besides Diabetes Today, Let It Be This: #SuspendBidding

If you do one thing besides diabetes today (which is a lot all by itself), please take a moment to click on this:

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Why should you do this? Why does it matter to you?

A few clicks can help suspend the Competitive Bidding Program, which was Medicare’s less than brilliant plan to save Medicare money by asking suppliers of diabetes testing supplies to bid for the privilege of selling test supplies to beneficiaries. What happened? Sure, the cost of strips went down… and so did the number of suppliers, the types of supplies offered (think: the cheapest on the market aren’t always the most accurate) and the ways to get the supplies were changed.

What increased? Costs to beneficiaries, hospital stays, and unnecessary deaths.

Despite warnings by other government agencies and organizations, the Centers of Medicare & Medicaid stuck their fingers in their ears and hummed: “We can’t hear you.”

But we can hum louder. And we can prevent needless deaths and disruption of access to diabetes supplies.

This directly impacts 11 million Americans on Medicare and indirectly impacts ALL of us. Your child or spouse or friend or coworker will someone be on Medicare and find themselves with restrictive access. But thinking ahead? It’s a slippery slope – first Medicare, then Medicaid, then private insurance companies decide that if Medicare and Medicaid are doing this, they can, too. The US Healthcare system is not saving money; exactly the opposite.

How can you help?

Click this pretty image:

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Tell Congress to suspend bidding of the Competitive Bidding Program immediately until there is a congressional oversight hearing to prove that not a single person with diabetes is being harmed by this program. (Hint: There is scientific proof that people with diabetes are being harmed.)

Want more facts and ways to share these facts? Head on over to: www.diabetespac.org/suspendbidding

 

Want pretty pictures to share on social media? Download these:

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Want a handy-dandy infographic to share? Here:

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So, in between checking blood glucose levels, deciding what to eat and how many carbs is in that meal, taking insulin or medication, fighting with insurance companies and staying healthy, please do just one more thing today and help spread the facts about #suspendbidding (and take action!).

It will probably be the easiest thing you will do today.

Thank you.

Diabetes Advisory Council

advocacy-1142138-640x640If you ever wonder what happens after you attend MasterLab, offered by Diabetes Hands Foundation and a speaker asks a great question…

“How many of you know what your state’s Diabetes Action Plan is?”

Great question… and sitting there, I had no clue. I didn’t know.

This is what happens.

I went home and I did research, because I was curious. And then more research and I grew more curious. And I found out that in my state, they actually have a Diabetes Advisory Council that must have 3 people with diabetes in its ranks.

The Diabetes Advisory Council advises the state on diabetes prevention, diagnosis, education, care, treatment, impact, and costs. It helps to create the very Action Plan that the speaker mentioned.

So…

I applied to be one of those three people.

And today, I can announce that I have been appointed by Governor Rick Scott to the Diabetes Advisory Council for the State of Florida.

Here’s the takeaway from all this…

  • Ask questions when your own answer is: “I don’t know.” You might be surprised at what you find.
  • Think about what you can do, no matter how big or how small, to make an impact. It’s not just the federal stuff that it’s important. It’s the local and the state stuff, too.
  • Reach for the seemingly impossible. (I certainly never expected to be appointed.)
  • Know that when the impossible happens, you can do it, because you have a community of people who support you as you support them.

If you had asked me three years ago if I was a diabetes advocate, I would have laughed in your face. I had no clue what being a diabetes advocate means. (And I thought: Who has time? Someone else will do advocacy. )

Today, without a doubt, I know the answer:

“I am a diabetes advocate.”

Everyone impacted by diabetes is a diabetes advocate. I am part of this amazing community of diabetes advocates.

I am so honored to help my community in the State of Florida and look forward to the opportunities to serve where I can.

5 Things I Learned from Meeting With My Congressman About Diabetes

washington-dc-7-1230576-639x852In the United States, we vote to have individuals represent us in Congress. Senators and representatives are “hired” by us to speak up and vote on important issues that impact our lives. Sounds like a cushy job, right? Show up, vote on a bill or two, then go home and talk to the people in your district that voted you in.

They wish.

Do you know how many bills and resolutions get introduced in Congress every two years? (We are currently in the 114th Congress, which began on January 6, 2015 and will run until January 5, 2017.) On average…about 12,000.

6,000 bills and resolutions per year. 

Some don’t get far. Some do. The 113th Congress enacted 296 laws and passed 663 resolutions in their two years. (Example of a resolution? S.Res. 564 (113th): A resolution honoring conservation on the centennial of the passenger pigeon extinction. Seriously.)

Legislation regarding diabetes is part of those 6,000 bills and resolutions each year. Just as I don’t expect medical professionals to understand every subtle nuance of diabetes technology, I don’t expect that my congressperson would be able to pull the diabetes bills currently on the Hill out of thin air. It’s madness. You try to remember 6,000 things!

That’s why, if you want your congressperson to be able to cosponsor or act on diabetes bills, after you send a message to your state’s reps in Congress, you can take another, more personal step… you can visit.

That’s what I did last week.

And this is what I learned about meeting with your congressperson about diabetes:

1. Be flexible with your appointment time.

I made this appointment to visit with him while he was back in the district back in March. It was changed about four times, as my representative had a limited time in the district this summer during break. I didn’t care. I wanted to meet with him and would have rearranged my schedule four more times to ensure we could meet. And once I was there, I waited. Just like a medical appointment. Just like waiting for a medical appointment, it was worth waiting for.

You might think it’s easier to get an appointment in DC, but in many cases, it’s not. It’s much easier to schedule a meeting when they are in their own districts. (And it’s cheaper for you, too!)

paper-pile-1238396-639x8502. Don’t show up unprepared.

You need to know what the bills numbers are, what they are asking to do, who the original sponsor is, and if you can, the financial impact of the bill on the U.S. public. Print the pertinent information out to give to the rep and/or staff person. It doesn’t have to be pretty; it just has to be accurate.(But don’t print out a ream of paper. It won’t get read. Give them all a few pages of the top info at most.)

I also printed out brief information regarding continuous glucose monitoring and the CGM Medicare Act of 2015, along with a list of his peers in our state and whether they had cosponsored any of the current bills on diabetes, and topped it off with the number of people in our state with diabetes, compared to the rest of the country. 

You are there to share why the congressperson should support this issue. Why usually includes a personal story – you, a family member, a friend… but keep it short. Very short. No life stories that take a year to tell. Practice or write down your short personal story and how it’s relevant to what you’re asking your congressperson to do.

3. Your congressperson has a staff. They are just as important as your congressperson.

While I wanted to speak directly with the congressman, I also knew that best laid plans don’t always happen. More importantly, the staff your congressperson has? Brilliant. They are the ones to advise, assist, and get a lot of the hard work in Congress done. They may look young, but they have the congressperson’s ear (and they are brilliant…). Be nice to staff. Super nice. Not only is it just polite, but they are the ones that can help you get your points about diabetes across.

4. Dilly dally and you lose. Get to the point.

Thank your congressperson and staff for their time right out of the gate. Then don’t waste a minute of it. 

Begin with your name and the bill (or two bills) that you want to talk about. (Don’t try to shove ALL the bills about diabetes into a meeting. You can’t cover all of them at once and you’re less likely to get a cosponsor for all of them.) Have the written information readily available. Some people like to look at the information as you go, while sometimes the staff take notes on the info you give.

Then give your quick personal story and how the passage of this particular bill will help people of diabetes. Answer any question that might come up about diabetes. Most people aren’t experts on diabetes. Even the simplest questions will help with their decisions to co-sponsor.

This meeting, I focused on two bills that I wanted my congressman to co-sponsor: the CGM Medicare Act of 2015 and the National Diabetes Clinical Care Commission Act. Why these two?

I won’t be eligible for Medicare for a long while, but the CGM Medicare bill is important to me because it will help make it easier for artificial pancreas technology to be covered (and because I have friends who NEED this bill because they are on Medicare and they have Type 1).

And 37 federal agencies trying to work together on diabetes issues isn’t an efficient way to work; the National Diabetes Clinical Care Commission Act will get them to communicate…

My meeting lasted less than ten minutes. He had others waiting (including one woman who came in with, I’m not kidding, two binders weighing five pounds each. Uh-oh.) and I had gotten my points across.

5. Thank them.

Send an email or a letter after your meeting, letting the staff and the congressperson know that you appreciated the meeting and the opportunity to share your thoughts.

Ask them once again to consider co-sponsoring the bill(s) and provide them with the bill number and the title of the bill (remember… 6,000 bills and resolutions each year!).

What happened after my meeting?

My congressman’s staff person sent me a quick email later that day, telling me that the he was cosponsoring both bills. The high that I felt was not from my blood sugars.

We’ve got a lot of Congress that needs to know about these bills and why they’re important to all of us. Some understand and some just don’t know. Congress represents the U.S. population – and 29 million of us have diabetes. We need them to understand that we need your help.

Where can you start if you want to meet your representative to talk about diabetes?

Do you know who your representatives for Congress are? Easy to find out…

Diabetes Patient Advocacy Coalition can help by inputting your zip code. (And if you haven’t sent an email to your rep, now’s the perfect time!)

Once you’ve got the names of your representatives, you can go to their websites and find out how to set a meeting. Sometimes you can call the office and sometimes you can send a meeting request via Internet.

I recommend that you arrange to have a meeting when the rep is home in the district, rather than DC.

I’d love to hear from you and your experiences on meeting with your representatives about diabetes. What questions did they have for you? Did they cosponsor? If they didn’t… what was the reason they gave? 

 

Diabetes Patient Advocacy Coalition

Today, please take a moment to head over to www.diabetespac.org and review the latest actions that you can take to let policy makers know that diabetes isn’t a box to be checked.

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DPAC – Diabetes Patient Advocacy Coalition: Why?

Your day just got a little more exciting.

Why?

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You can make a difference…in not just your life, but the lives of 29 million Americans and their families, friends, and employers.

Wait! Don’t sip your coffee and click to the next tab on your browser. (Sip your coffee and keep reading.)

If you are like I was (not too long ago), the thought of diabetes advocacy was simply this:

“Like I have time. Someone else will do all the hard work. Whatever.”

Now…

  • What if I told you that someone did all that hard work for you?
  • That advocating for yourself, people you love, heck… anyone in the U.S. with diabetes is now simple, easy, and quick?
  • One website to learn about the issues impacting people with diabetes being decided by lawmakers and governmental agencies and then tell them quickly how you feel?
  • A few clicks and you’re done, but you’ve helped the diabetes community and become a diabetes advocate?

Allow me to introduce the Diabetes Patient Advocacy Coalition (DPAC) and invite you to join me and others who care about our community.

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Who is DPAC? You are. I am. We all are.

 

DPAC is a non-profit and non-partisan organization founded to provide united, simple, and effective advocacy opportunities for people impacted by diabetes for safety, quality and accessibility of care.

And there is no cost to be a part of it.

Sign up and take action immediately from the comfort of your keyboard. You won’t have to figure out who your government representatives are or how to contact them – it’s done for you. After you quickly learn why it’s important to let them know how you feel on a diabetes issue, you just… Click. Click. Done.

I don’t think I’ve ever met anyone who said: “I’d like to spend my day reading over proposed legislation and policy all day.” I certainly don’t. DPAC does that for you, boiling it down to the key points that you need to know.

Why?

Why bother to join? Have you ever been to a concert where the booming sound from the speakers drowns out a conversation you’re trying to have with your friend? One conversation gets lost sometimes.

Have you ever been to a concert where the singers asks the crowd to belt out the chorus of a song? When everyone is raising their voices as one… the whole audience is heard. That booming sound comes from the people in the crowd. We are that crowd.

The diabetes community deserves to be heard by our policymakers as a united voice. 

Why?

1434784_54457950Why join the Diabetes Patient Advocacy Coalition? I already do stuff with other diabetes organizations, you say. How is DPAC different, you say?

DPAC will keep policy makers’ attention on people with diabetes. Diabetes advocacy is like diabetes care; both are long-term processes with no quick fixes. 

Every diabetes organization has a mission; sometimes the mission and the issues that need to be addressed don’t align. Organizations may support one bill and not another – and that’s fine! Some wonderful diabetes organizations are constrained by their non-profit structure, preventing lobbying or the type of advocacy that pierces the heart of the matter.

DPAC is pro-diabetes, pro-existing organizations, pro-getting our diabetes voices heard by policymakers – and that’s the sole focus. Where there is already a movement by one wonderful organization, DPAC adds to the swell. Where an issue is not being given the spotlight, DPAC will shine the light. DPAC doesn’t want to re-invent the wheel; they want the wheel to go faster and gather steam.

If you’ve heard me mumbling over the past few months about a project that I’ve been working on… this is it, along with Bennet Dunlap and some pretty fantastic people and organizations. I’m all about making diabetes advocacy easy – and now it is.

Help raise a united diabetes voice and become part of DPAC. Come join me.