DPAC – Diabetes Patient Advocacy Coalition: Why?

Your day just got a little more exciting.

Why?

WE_ARE_DPAC-03

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.

WE_ARE_DPAC-01
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. 

 

Two Minute Diabetes Advocacy: 21st Century Cure Act + CGM

708615_95129272One hundred years ago, those of us with Type 1 diabetes would be pushing up daisies. Pining for the fjords. Deader than doornails. Not living.

Today, thanks to amazing researchers and the advancement of technology, we are living longer, healthier lives. We are living in the 21st Century. No flying cars or Jetson butlers, but yet… we are making headway, at least on the healthcare front. But we need your help.

Here’s your two minute diabetes advocacy challenge for today.

(Less time than it takes to pop some microwave popcorn!)

The 21st Century Cures Act is a bipartisan (meaning both Democrats and Republicans are interested, which you know is rare!) attempt at vaulting U.S. healthcare into this century by changing the ways drugs, devices, and treatments are approved and marketed. It’s a whopper of a draft bill, currently, with five sections:

  • Title I—Putting Patients First By Incorporating Their Perspectives Into The Regulatory Process And Addressing Unmet Needs
  • Title II—Building The Foundation For 21st Century Medicine, Including Helping Young Scientists
  • Title III—Modernizing Clinical Trials
  • Title IV—Accelerating The Discovery, Development, And Delivery Cycle And Continuing 21st Century Innovation At NIH, FDA, CDC, And CMS
  • Title V—Modernizing Medical Product Regulation

If you want to read all 393 pages of the bill, have at it here.

There is a section for “Breakthrough Devices.” As The Regulatory Explainer (an amazing site!) explains:

As with breakthrough drugs, breakthrough devices are those which represent “breakthrough technologies,” are intended to treat conditions “for which no approved alternative exist,” offer “significant advantages over existing approved or cleared alternative,” are “otherwise in the best interest of patients”  and/or have the potential to “reduce or eliminate the need for hospitalization, improve patient quality of life.”

Continuous glucose monitors (CGM) fall soundly into that category and are currently covered under many private insurance plans (and some state plans), but once you age onto Medicare, if you have Type 1 diabetes and use a CGM, say good-bye to your coverage of that device. Out-of-pocket is your only option, and it’s cost-prohibitive. As people with Type 1 diabetes live longer, we are seeing that the tools that will help us most are not being offered by CMS/Medicare. This has to change.

We need to ask the Energy & Commerce subcommittee to include continuous glucose monitor (CGM) coverage for Medicare participants in the 21st Century Care Act.

Here’s where you can help in less than two minutes. (Throw that popcorn into the microwave right now.)

Got Twitter? Yes? Go!  

(No? Sign up for Twitter and help raise your voice to your representatives in Congress. They do listen! But it will take a little longer than microwave popcorn.)

Hit the start button on your microwave.

1. Click here. (http://www.stripsafely.com/the-twitter-page/) and read the quick info on that page.

2. Find out if your state representative is in the Energy & Commerce Subcommittee list on the page. (If you don’t know who your rep is, click here and enter your zip code. Voilà!)

3. Find your state and your rep and click on the “CGM in 21st Century Cures” and TWEET!

4. Share that page with everyone you know. (Look for the SHARE THIS link at the bottom of that page.)

5. You’re done. Carefully open that bag of microwave popcorn; contents may be hot!

Thank you for letting your representative in Congress know that including CGM coverage for Medicare participants is the right thing to do. No one should be denied coverage of this breakthrough diabetes device because of age!

Two Minute Diabetes Advocacy: CGM Medicare Coverage

708615_95129272It’s time to be a Two Minute Diabetes Advocate!

I’m keeping this short and sweet that you can understand the importance of this bill and take action on it in under two minutes.

Senate Bill: S.2689

‘Medicare CGM Access Act of 2014’

Even if you are a parent of a child with diabetes, this is an action you need to take. (This bill will eventually help with artificial pancreas systems, so it does matter to all of us.)

85% percent of Type 1s are adults. We’re living longer and with less complications. Many of us are headed for Medicare or are already there. It’s shocking to know that if you’re on Medicare, you are NOT covered for a continuous glucose monitor (CGM).

Imagine having a technology that helps you and having it covered by your insurance – and then you can’t get the device or sensors covered because you’re on Medicare.

That’s not a world I want to live in.

So, we’re rising up to support those who can help get CGMs covered by Medicare: U.S. Senators Susan Collins (R-ME) and Jeanne Shaheen (D-NH). Here’s the press release about the introduction of the bill from JDRF. Lots of good info. 

What can you do?

JDRF is leading the campaign. They’ve set up a click to email campaign for your senators. All you do is fill out your info and add a personal message and send it on its way. So…

1) Click here and fill out the email form. 

2) Add your personal message. You can even copy and paste this:

I have diabetes and I am worried about my future. 

I am asking you for your support on this bill; your co-sponsorhip would be even better! Continuous glucose monitors (CGM) have been shown to help prevent hospitalizations and emergency room visits. To not permit coverage of this technology is fiscally irresponsible for Medicare, as it will save money in the long run. 

OR:

A loved one has diabetes and I am worried about their future. 

I am asking you for your support on this bill; your co-sponsorhip would be even better! Continuous glucose monitors (CGM) have been shown to help prevent hospitalizations and emergency room visits. To not permit coverage of this technology is fiscally irresponsible for Medicare, as it will save money in the long run. 

(Skip over the ‘print this message to personalize’ if you want.)

3) That’s it. Go back to your day.

If you’re feeling extra ambitious, share this post with your friends and family and help show the Senate that while this is NOT a cure, it will help those with diabetes live well until there is one. (Click on the email link below this post or share it on FB or Twitter…)

You can also sign this petition from JDRF to Medicare.

Bookmark CGMSafely.com – it’s the latest grassroots advocacy movement begun by the amazing Bennet. You’ll get the latest info and actions on CGM here.

 

Two Minute Diabetes Advocacy

708615_95129272If you have two minutes, you can advocate for diabetes.

I know what you’re thinking.

What can I do in two minutes?

More than you probably think possible.

There are those who make it their life’s mission to advocate for diabetes. I am so very grateful that they speak in front of the FDA panels and talk with decision makers in D.C., because I can’t right now.

You may not be able to devote a lot of time, but you still want to make a difference. Me, too.

With that in mind, I am dedicating a portion of The Perfect D blog to “Two Minute Diabetes Advocacy”. This is the first portion – an amuse-bouche (a little taste) to whet your appetite.

A stumbling block I see in advocating for diabetes is the amount of reading that needs to be done to understand the issue, whether it be a docket or a brief or a bill being introduced. There can be a lot of gobbledygook and if you’re like me, you want to cut to the chase, get to the point quickly, and then act on it.

Two Minute Diabetes Advocacy

 

Here’s the deal I present to you…

  • I’ll read the gooblyedygook,
  • summarize the key points for you (and yes, I’ll add my own comments. It’s my blog.),
  • and then give you the steps you can take in just two minutes to advocate for diabetes.

I’m association agnostic when it comes to diabetes advocacy. If more than one organization offers an easy way to express your opinion on a topic, then I’ll give it for you to decide. You just won’t have to go hunting for a way to advocate. I’ll bring the options for you.

Some may take just a little longer than two minutes, but you can skip an extra visit to Facebook occasionally, can’t you? Perhaps one less Buzzfeed quiz?

I’ve seen what the power of our community can do with just a little time from each of us. There are so many opportunities to advocate for ourselves, our loved ones, and for the future of the United States.

1 in 3 American adults will be diagnosed with diabetes by 2050 if we don’t do something.

Your end of the deal is to take those two minutes and do just one of the options I give you. Of course, it’s on the honor system, but I’m hoping that we will make a difference. So little time can do so much good. Let’s start with this…

National Diabetes Clinical Care Commission Act

The Highlights from the Bill (House 1074/Senate 539)

“To amend the Public Health Service Act to foster more effective implementation and coordination of clinical care for people with pre-diabetes and diabetes.”

“There are 35 Federal department, agencies , and offices involved in the implementation of Federal diabetes activities.”

What The Bill Will Do

What the bill will do: Create a National Diabetes Clinical Care Commission to make recommendations regarding better coordinations and leveraging of programs that will support clinical care (between health providers and people with diabetes and pre-diabetes).

This Commission will include voting members from heads of Federal agencies/departments that impact clinical care AND a select few outside of the government: clinical endocrinologists, physicians who impact diabetes care, primary care physicians, Certified Diabetes Educators, patient advocates, national experts.

The Commission will meet up to four times per year to:

  • evaluate the existing utilization of diabetes screening benefits,
  • address issues with data collection or the benefits,
  • identify current activities and gaps to help clinicians provide integrative care for people with diabetes and pre-diabetes,
  • make recommendations about coordination, tools, and programs needed,
  • recommend how an outcomes-based registry can be created and used,
  • evaluate and expand education and awareness to physicians and other health professionals regarding clinical practices for the prevention of diabetes and the precursor conditions of diabetes,
  • review and recommend outreach and dissemination of educational resources for health professionals and the public.

After meeting for the first time, the Commission will have 90 days to come up with a plan for carrying out the activities of the commission, including a budget, resources needed, and who needs to be involved to make it happen. In three years, if not sooner, the Commission will submit a report to Congress and the Secretary of HHS of the findings and recommendations.

Why You Should Care

1) We do not have a Commission for diabetes. One in three Medicare dollars goes to treating diabetes and its complications. Duh. We need one.

2) 35 Federal agencies. Have you tried to get 35 people to communicate on something, never mind 35 agencies? This Commission will ensure that no one is reinventing the wheel or wasting tax dollars duplicating work.

3) Educational materials. How many times do you cringe when a clinical medical professional makes a comment about diabetes that is just not correct. The Commission will help heighten diabetes awareness on a grand scale.

4) Patient advocate on the Commission. A voting advocate. I’ve met some existing FDA advocates and they are super intelligent. We need a patient at every table. This Commission will have one.

 How You Can Advocate for Diabetes In Two Minutes Or Less Right Now

The American Association of Clinical Endocrinologists have done all the work for you. One click. 

Go here and click the Take Action button to send an email to your representative and two senators for your state. The email body is from an endo’s viewpoint, but you can quickly change it to tell them why your elected representatives should co-sponsor or vote yes for this bill.

You can copy and paste this if YOU have diabetes:

I have diabetes. We need a coordinated action committee for the epidemic that is taking one of every three Medicare dollars for treatment. We need better education for clinical professional and the general public to prevent complications and help those who live with this disease. Please vote yes on this bill.

You can copy  and paste this if SOMEONE YOU LOVE has diabetes:

Someone I love has diabetes. We need a coordinated action committee for the epidemic that is taking one of every three Medicare dollars for treatment. We need better education for clinical professional and the general public to prevent complications and help those who live with this disease. Please vote yes on this bill.

(The AMA, AADE, JDRF, ADA and others all support this bill. I couldn’t find an organization who doesn’t support it!)

That’s all you have to do today.

One click and done.

But every click makes a difference.

Every one.

If you’re interested in doing a little more than one click, I urge you to complete the quick survey over at Diabetes Advocates and help change the world of diabetes one advocate at a time.

And when I say advocate, I mean you.